Thursday, October 18, 2012

His last days

Little did I know that the "walk" I had with him on October 7, 2012, would be the last on this earth. On Wednesday, October 10, 2012, at 11:36pm, my beloved father passed from this earth to his eternal home.

On the evening of October 8, the nursing home called to tell me that after he had eaten his meal, he vomited and had loose bowels and then became unresponsive. His breathing rate also increased some, and his oxygen saturation went down. They had cleaned him up then put him in bed and put him on oxygen. My husband and I went with our daughter to go see him. I went in first, and when I spoke to him and told him who I was and rubbed his arms, he began to move around and I could tell by his body language and facial expression that he knew I was there, even though his eyes remained closed.

We stayed with him about an hour or so, and I held his hand and tried to make sure he was comfortable. My daughter held his hand briefly a couple of times as well. At that point I didn't know if this was a temporary or permanent downturn in his condition. His breathing wasn't that bad yet, just a little bit faster than normal. He wasn't taking food or drink, though, despite their best efforts, but again, I didn't know if it was only temporary. He would also move his hands to his stomach area from time to time and wince a little as if in some pain. A couple of times, he did try to open his eyes, as if to look at me, but was only able to do so for a few seconds before closing them again.

The physician's assistant came by and examined him and talked with us briefly, then said he would be back the next morning to check on him again. They said they would put him on some Tylenol for the pain. I had already called my brother, so he came as well. As soon as he came in the room and spoke to my dad, my dad began moving around and even tried to sit up, and his eyes opened slightly for a brief moment before they closed again. My brother told me later that after my husband, daughter and I had left, our dad had opened his eyes again briefly to try and look at him.

That night I had trouble sleeping, despite my best efforts to relax. Then next morning I went to see him again after dropping my daughter off at school. He seemed about the same, except he appeared to be in more pain, though his eyes remained closed. I spent a couple of hours with him, and spoke with the resident RN who was there at that time, as well as the physician's assistant when he came by again. We discussed what might be going on and what the next steps were. Their best guess what that he had an infection in his lungs, which the antibiotics he had been on had not helped. The physician's assistant talked about doing another chest x-ray. My dad had just finished a second round of antibiotics, which was a different type from the first one he had been on. We talked about trying another round. After giving it some thought and praying for wisdom, I felt it would be best not to, and the physician's assistant and RN agreed, as well as my step mom when they called her. Their thinking was the same as mine, that if two rounds of antibiotics had not helped, then why do a third round at this point and risk giving him nausea as a side effect. We also all agreed to go ahead and order a low dose of pain medication to be given every few hours.

After picking up my daughter from school that day, we went to visit my step mom in the Rehab Center. On the way back home, something was urging me to go back by and see my dad again, despite having my daughter with me and needing to get her home since it was a school night. I'm so glad now that I listened. When we got there, his breathing was markedly worse. Not only was he breathing much faster, he also had the sound of thick congestion in his lungs, which you could hear with every breath. The one positive thing is that the pain medication was helping, he was no longer wincing in pain. I stayed as long as I could, holding his hand and making sure he was comfortable.

Thinking it might help some, they suctioned him while I went out of the room with my daughter, then began trying to give him a breathing treatment. Giving him the breathing treatment was no easy task. Since he couldn't hold anything in his mouth, they had to put a mask on him so that he could breathe it in, but he clearly didn't want the mask, and began fighting to take it off. We tried, in vain, to stop him and convince him to leave it on. I was amazed at how strong he still was. Finally they had me hold the mask right in front of his face so that he would simply breathe it in naturally, which he allowed me to do. It didn't seem to help with his breathing or congestion, however, at least not that I could tell.

At one point I hugged him and told him that it was from (my step mom's name). I told him she would be there with him if she could, but that she was still in a Rehab Center, and that she was slowly getting better. As clear as day, his facial expression changed and he nodded in acknowledgement. Later I told my step mom about that moment, and my hope is that it helped ease the pain in some way of her not being able to be there in person.

I didn't want to leave that night, but I had to get my daughter home. I knew he had all the signs that it wouldn't be much longer, and was expecting them to call sometime during the night. I still held out hope, of course, that something would change and that he would suddenly get better again, but I also knew that it may simply be his time to go. My dad was upgraded to critical care status with Hospice, and a nurse was called in to sit with him overnight. That made me feel better to know that someone would be with him.

At about 11:40pm, the phone rang. I knew who it was. The hospice nurse said it was that it was peaceful, that he simply slowed down his breathing gradually, then stopped.

The Memorial Service in celebration of my father's life was held this past Monday. It was very nice. Five of my father's former employees spoke about him, and I was awed by their words. My father helped so many people and had a much greater effect on peoples' lives than I ever realized. I take comfort in the fact that my father's influence will continue to live on through many in this community and all over the country.

I also take comfort in knowing that he very likely at some point along the way returned to the faith he knew in his younger years as the son of a Baptist preacher--according to the book of John in the Holy Bible--and therefore is now in no more pain or suffering, but is in Heaven praising God, full of joy and peace, reunited with family and friends who preceded him and held the same belief, including someone very close to my heart - my precious mother.

Sunday, October 7, 2012

"Walking" hand in hand

Today my dad was having one of his better days. When I arrived, he was slumped over in his wheelchair sound asleep and it concerned me at first when he didn't respond to my touch, but then I hugged him from the side and spoke louder to him, rubbing his arm, and he woke up then.

It was only moments before he was ready to rock and roll, so off we went. Because of my foot being hurt and still swollen a bit, I wanted to sit with him at a table the whole time, so my daughter and I could sit down while visiting with him, so I directed him to a table that had a missing chair, rolled him up under it, and locked his wheelchair. About ten minutes went by with him growing more and more restless, though we did get to enjoy being with him during that time, but then I decided to let him roam, since it makes him happy. So I unlocked him and off we went again, and my daughter went to the counter at the nurses' station to play with a puzzle.

This time I decided to walk beside him and hold his hand as he rolled himself along with his feet, versus guiding him from behind. I could tell he really liked that. We walked to one end of his residence area, then he turned himself around and we walked to the other end, and back and forth again a couple of times. I could sense how relaxed and content he was.

At one point, a nurse was coming on shift who really likes my dad and she came over to say Hi to him while we were walking, but he didn't like that too much. It was comical watching him let her know with facial expression and body language alone that he was with his daughter and enjoying walking with her and wanted nothing to do with anything else.

Someone reading this might ask, "Are you sure your dad knows who you are? That you're even his daughter?" And my answer is, "Yes, I think he does." While we were still sitting at the table, there was a moment when his facial expression came alive, he looked right at me, then smiled and said, "Well Hello there." It wasn't a Hello you would give a stranger you had just met, or even just someone familiar. It was a Hello a father would give to a daughter. The same Hello he used to give me all the time before Alzheimer's even entered the picture.

I enjoyed walking with him, too. My foot hurt after that, but it was worth it. It was something I could do with him, since we can't have any kind of real conversation anymore. Funny how just being together can mean so much sometimes, no words required.

Saturday, October 6, 2012


It's been a long time since my last post. I didn't really feel much like writing in my Blog for a period of time, but now I'm ready.

I'm not sure where to start, so I'll just start with the most recent happenings. My dad's ability to swallow has declined considerably, and he is now on a thick-liquid-only diet. He aspirates fluid on a regular basis now, and it goes into his lungs. Sometimes I find him not doing well, and can hear a gurgle when he tries to talk. Other times, I find him doing better, like the last visit on Friday morning when he was talking clearly, breathing fine, and VERY feisty. He was "running" all over the place in his wheelchair, going into other residents' rooms, on a mission of some sort.

A feeding tube was recommended for my dad, but in his Will, way back before he was even diagnosed with Alzheimer's, he specified that if his health ever declined to the point where a permanent feeding tube would be required, that he did not want one.

His doctor recommended that Hospice be brought in. They do that when they believe their patient is declining to the point that they feel they have less than a year to go. I was the one who had to meet with Hospice to discuss it, and thankfully my husband was there with me. It was harder than I thought it would be, but I got through it. The reason I was the one who had to do it versus my step mom is because something has happened to her as well, and she is now in a Rehab Center.

Let me explain. A few weeks ago, my healthy, very active step mom was meeting with some of the staff at my dad's nursing home to talk about my dad, and had a brain hemorrhage. Thankfully, there were nurses present. She said she was dizzy, then became weak and closed her eyes, and began vomiting. I was also in the nursing home that day, with my daughter, in visiting with my dad, with no clue whatsoever that my step mom was meeting with the staff in another part of the nursing home. They had tried to call me when it happened, but when my phone rang, I didn't recognize the number (that nursing home had never called me prior to that), so I let it go to voice mail. Something was telling me to answer it, but I didn't want to interrupt the time with my dad. I figured I would check the voice mail later. Then as I was leaving the nursing home with my daughter, we walked out the front door and saw the emergency vehicles parked at the entrance to the nursing home, idling, lights flashing, but no one inside the vehicles, so I figured they must already be inside. Something "checked" in my spirit and it made me pause, and I wondered who they were there for, and prayed that God would be with them and help them. Little did I know at the time that I was praying for my step mom.

When I got home, I still had not checked the voice mail. It wasn't until about an hour later that I remembered to check it. I could not believe what I was hearing. I called them back immediately and spoke with one of the nurses to get more details, then asked what time it had happened. It was then that I realized I was THERE when it was happening and was kicking myself swiftly in the rear. I found out what hospital they had taken her to and since my husband was about to get home, I waited for him and we all went to the emergency room. They didn't know yet what was wrong with her and were running tests. After finding out it was a brain hemorrhage and that it could go either way--get much worse, or stop bleeding--we prayed hard that it would stop, and were so thankful and relieved when the second CAT scan showed that the hemorrhage had stayed the same size and had not grown. She was transferred to another hospital, where she stayed for several days, and was then moved to a Rehab Center. Her recovery has been painstakingly slow... she is still having double vision and feels dizzy if she tries to sit up for too long... but we are continuing to pray and hoping for the best.

Sunday, August 12, 2012

Swollen hands and feet

Today when we went to visit my dad in the nursing home, I noticed that his hands and feet were really swollen. I talked to the nurse on duty (very nice, by the way), and she said they're doing some testing. They think he's having some circulation issues.

We arrived when he was eating dinner and the table was full with other residents, so we waited in the "living room" area. When he was done, he started "walking" while in his wheelchair with his feet, and was getting around pretty good. Except there are no wheels on the sides, so he couldn't steer, so we had to help him with that. He "walked" out of that area and into another area that led to a big hallway and stopped there. There was no-one around there, so I have to wonder if he purposely did that so he could have some time alone with his family. My daughter ran up and down the hallway, and every once in a while, he would look up slightly to look at her, but then put his head back down again.

He seems to have a cold, too, and was hunched over, so I'm guessing he's not feeling too great. He was only slightly responsive to us, and seemed to have trouble making eye contact. After only a few minutes, we looked over at him and suddenly realized he had fallen asleep, so we went and got the nurse, and she came and took him back.

Oh, and the nurse said he had been getting up out of his wheelchair and slowly walking, holding on to the wall railing, and they were following behind him making sure he didn't fall. I'm so thankful that he is still able to walk, even if only for short distances.

Forgive me for the non-interesting, rambling post tonight. It's late and I'm tired, but I wanted to give an update. I appreciate the continued prayers of anyone out there who's been following this. It is only by God's grace that I am able to handle seeing my Dad suffering the way he has been.

Monday, July 23, 2012

Visited my Dad at the new place and... Wow!

I'm impressed. VERY impressed. I had heard it was a nice place, but didn't want to get my hopes up like I did for the first place he was in, so I didn't set my expectations too high. I was pleasantly surprised! Comparing this new place to the place he was in before would be like comparing a brand new Cadillac to... umm... maybe the old rusty Malibu station wagon I owned many years ago that started itself back up after I turned the engine off? (Not to mention the clouds of smoke that billowed out the tail pipe.) ;-)

I wish I could exclaim how thrilled I was that someone else out there had the same dream as me to build a Cadillac-like Alzheimer's Facility/Nursing Home for the elderly who so deserve it, but... I'm afraid it is because this particular nursing home is for veterans. Still, I am thrilled for the veterans who are able to live in (or temporarily stay in) such a nice facility and also so deserve it.

We visited him on Sunday afternoon and as soon as we walked in the front doors, I had a very good feeling. After we signed in and walked further, I was liking it more and more. Very clean, no pungent smells, nice furnishings. Definitely not your typical nursing home.

We got to the section where my dad was after almost getting lost in the vast expanse of hallway surrounding an outdoor courtyard area so large you could barely see the other end of it, were let in by a very nice man (a doctor, maybe?) who punched in the code for us that opened the doors automatically (unlike the other place where we had to press a doorbell and wait for someone to come open the door for us).

As we approached the area where his room was, I spotted him in the communal "living room" area. And it really was like a living room, complete with a big flat screen TV and fireplace to use in the cooler months, with a "porch" area leading off of that. The chairs... oh my... EVERY chair was an easy chair and no ordinary easy chair at that. VERY comfortable. My dad was in a special kind of chair. Like an easy chair but different. It had two foot rests, and no handle on the side so that he couldn't put his feet down and try to get up when the nurses weren't looking. He could, however, be adjusted to where he could sit in a more upright position, but his feet were still up far enough to where he couldn't put them down on the floor. Plus (and I had to kind of laugh at this), on the back of his shirt there was a little clip with a line running to an alarm, so if he did figure out a way to get out of the chair, the alarm would go off (and it actually did at one point when he was adjusting his pillows and he accidentally knocked the clip off, so we know the alarm works very well). Genius.

I talked to a nurse while there and found out that he is receiving daily therapy now during the week! Once a day on weekdays, a physical therapist comes and gets him up and takes him for a walk (and has him do other exercises, too, I'm sure). I was so happy and relieved to hear that.

My daughter was so precious with him, and he responded well to her (and to us). He seemed in good spirits and overall doing pretty good. He drank some water while we were there, and ate pudding as well, all with no help at all (my daughter figured out that he was saying he was hungry, when neither my husband nor I could understand him, and she went and told the nurse and brought him the pudding, and then later the cup of water). We were talking with the nurse and I happened to mention that my daughter wanted to be a doctor, so the nurse showed her how to use the stethoscope to listen to my dad's heartbeat and stomach sounds. It was one of those rare times my daughter got very quiet. Her reaction was priceless.

My dad did say some words a few times that we could understand clearly, and responded appropriately to a couple of questions the nurse asked. The nurse said he was free of all infections now and was no longer on antibiotics. More good news.

I didn't even think to see what his room or the dining room looked like while we were there, we were so busy visiting with him in the "living room" area. I will have to make it a point to do that next time.

Thursday, July 19, 2012

Moved to a Nursing Home

Sorry it's been so long since I updated. Life has been busy, in a good way. I started a business, which is actually a fulfillment of one of my New Year's Resolutions/Goals, which was to--by the end of the year--come up with a plan to allow me to eventually make an income large enough to help me reach another ultimate goal of mine: To build one of the best Alzheimer's facilities in the world, and to have several around the country, God willing. I haven't worked out all the details of what I want the facilities to be like, but it is going to be really, really nice. I will not be interested in making a profit from it, only have it sustain itself, so prices for families will be very affordable and the employees will be paid well (and you better believe I will have high standards for the type of employees that work there). :-)

Then of course there are the more immediate financial needs of my daughter's upcoming school tuition and building her college fund, as she has aspirations to be a doctor, which may or may not hold when she gets older, but it doesn't hurt to be prepared just in case. On a side note, I asked her one day what her reason was for wanting to be a doctor (testing to see if it was a real desire, to be honest) and her response was: "Because I want to help sick people. And because God tells me to." Hey that's good enough for me.

Anyway, on to my dad's move. To make a long story short, he recovered well from the UTI, then got sick again and had to return to the E.R.; this time it was a stomach/intestinal infection, and he was put on another round of antibiotics, and began recovering from that. Somewhere in there he fell again/went to E.R./no concussion but had a nasty black eye/returned to ALH and recovered from that. My step mom determined at some point that enough was enough and my dad needed to be in a facility where he could have closer supervision and better care than what an ALH can provide, and began looking into Nursing Home facilities. She found a nice one, and though the cost is even more, she is cutting costs to bare bones in order to be able to do it. Bless her heart! Another reason for me to start a business. Once it gets off the ground, I will make sure she is well taken care of and doesn't lack for anything! She has sacrificed so much.

Back to my dad. He was moved to the new facility on Monday. Another plus: it's closer to where I live! So I will be able to see him more often. Not so good for my step mom, as it's much further from her, but she feels so good about the new facility and how well taken care of it seems he will be, that she is comfortable visiting him less often than when he was only five minutes away. There are nurses and doctors on staff there, and the nurses can see my dad in his room at all times from the nurses station.

The newest change in his medications seemed to do the trick this time. Since returning from his last hospital stay, he has been more lively, chatters away (though most of the time you can't understand what he's talking about), and can get up out of his wheelchair or bed and "tries" to walk. Oh and he is also able to use his arms and hands better now. He looks a lot less pale, too (though I'm afraid the paleness I was seeing before was because he was silently suffering from a UTI for at least four months!).

I haven't visited him in the nursing home yet, but have driven by there and it looks nice. I plan to try and visit him today while out delivering customer orders and running errands.

Sunday, June 24, 2012

A rough few days

My dad is back at the Assisted Living Home now and--after a rough few days--is doing better today. The first antibiotic they used for my dad's bladder infection while he was still in the hospital didn't help and the infection only got worse. Then they discovered that the bacteria that was causing it was E. Coli, and had to put him on a very strong, special-ordered antibiotic. They said they believe he had the infection for at least four months before it was detected. At least. Wow. I am amazed that it didn't get worse than it did and also that it didn't go into his kidneys.

Today my step mom told me on the phone that he was sitting up in a wheelchair today, chattering away, and once again, trying to get up out of his wheelchair. We have stayed away as a precaution since hearing about the E. Coli and the fact that the hospital had moved him to a private room and had a note on the door about wearing a mask, scrubs, and gloves upon entering his room. I didn't want to chance exposing my daughter to it, but I think the danger has passed now since he has been on the new antibiotic greater than 24 hours, so I'm planning to take my daughter to see him sometime tomorrow or Tuesday.

I give praise and thanks to such a wonderful Heavenly Father who has watched over my dad and held him in the palm of His hand.

Sunday, June 17, 2012

Update after hospital visit

I am pleased to report that my dad seemed to be doing okay, and actually looked a little better than the last time I saw him at the assisted living home. The color had returned to his skin a little, his eyes were a little bit clearer, and his voice sounded better. He seemed more responsive, too, and seemed to recognize me and gave me a big hug, which he actually initiated this time (something that hasn't happened in a very long time).

I found out that he had not fallen yesterday morning like I had thought, but the night before, right after they had put him to bed. And he did get back out of bed himself without any help before falling, according to the report from the workers at the assisted living home.

They're treating him for the UTI and sinusitis with antibiotics, and will also be testing his swallowing capability, as he has been having a bit of trouble swallowing for awhile now. He hasn't been eating as much over the past couple of months and has lost 35 pounds (and he wasn't overweight to begin with, or maybe by only about five pounds). They aren't sure if it's because his appetite is down or because he can't swallow well, or both.

The doctor that is seeing him while he's in the hospital also discontinued all his medications (apparently he has to use a different doctor while in the assisted living home, one that oversees the residents there), except for the antibiotics, and will be reintroducing them one at a time to try and get a better dosage, hoping it will help my dad be able to function better.

I do find it very interesting that after discontinuing his medications, he was more responsive and more "himself," and able to communicate better ("better" being a relative term, of course). It's hard to describe the difference I could see in his face and in his eyes, though. He was more "there," if that makes sense. The last time I saw him at the assisted living home, I looked into his eyes once and it was like he wasn't even there. It was his body, but the man, my dad, didn't seem to be there. It gave new meaning to the term, "blank stare." It was a chilling moment. But today, he was very much there. There were brief moments when his eyes were glazed over a bit, but the majority of the time, he was really there, and I can't tell you how relieved I was to see "him" again.

For those who might be reading this, I beg of you (and I'm not usually the begging type, mind you), if you are the praying type, please pray that the doctor who is currently under my dad's care will be able to figure out the best dosage for my dad's medications, so that the time he has left on this earth will be of the best quality possible. Thank you.

Saturday, June 16, 2012

In the hospital again

On my last visit to see my dad in the assisted living home, which was Wednesday afternoon, a worker there told me that he had gotten up out of his wheelchair and taken two steps over to the dining room table. I was thrilled to hear that, as I'm sure it felt so good to my dad, and I was so thankful to the Good Lord for hearing my daughter's prayers as well as mine, that his legs and feet would be strengthened so he could walk again.

We had a pretty good visit, though my dad seemed to struggle to talk. I helped him eat his dinner, which was painstakingly slow. Meanwhile, my daughter provided good entertainment for a group of ladies who had finished their dinner and had wandered in the direction of my dad's table. While feeding my dad, he breathed in through his nose a couple of times, and I noticed that it sounded like he was quite stopped up. He didn't feel hot to the touch, though, so I figured it was just a cold.

As it turned out, however, it wound up being Sinusitis. This morning I received a text from my brother that my dad was in the hospital. While he was getting out of bed (whether he tried to do it alone or with help, I don't yet know), he fell and hit his head on the a/c unit in his room. They called my step mom and he was transported to the emergency room, where they determined he would be okay as far as his head injury, but then discovered his sinus infection, as well as another urinary tract infection, and he wound up being admitted.

Tomorrow, my husband and I plan to go visit him at the hospital after church. I'll update as soon as I can.

Saturday, June 9, 2012


This past Monday was a decent visit with my dad. He was in a deep sleep in an easy chair when we first arrived, and since a worker there told me he had just fallen asleep, I didn't wake him right away. My daughter found a box of craft materials to play with, and I read a magazine. After awhile, maybe about twenty or thirty minutes, I finally woke him, which was--for the first time ever--very difficult to do. This time I wheeled him out of the Alzheimer's unit altogether and out the main front entrance. It's mainly just a parking lot with a sidewalk, but it's a change of scenery for my dad, and he can see more of the sky and wide open spaces from there.

Before it was time to say our goodbyes and leave, I spoke with a worker and asked some questions about my dad and found out that he was now sleeping though the night, which was such a relief to hear, and an answer to prayer.

At home a couple of days later, I decided to have a snack that I had not had in quite some time, which was canned fish steaks in mustard sauce, spread on crackers, and it brought back memories of good times with my dad (I have no idea if they are actually sardines or not, the can just says, "Fish steaks".) He was the one who introduced me to those fish steaks back when I was a kid and I wound up liking them, so he and I would eat them as a snack together quite often. Somehow, though, they didn't taste quite as good without my dad there to eat them with me.

Then I was reminded of the time he took me on a trip with him and we stopped at a Krispy Kreme doughnut shop where they made the doughnuts fresh for customers all day long. We sat in the car in the parking lot and ate some together. I remember how good they were and how much I appreciated my dad making sure he stopped at that very store (he traveled a lot so he knew where all the "good" places were). ;-) That must be why I like Krispy Kreme doughnuts so much to this day.

When I think of my dad and the condition he is in now, sitting in a wheelchair, so frail and weak and pale, it helps to conjure up those good memories, and to cherish them.

Wednesday, May 30, 2012

He stood up

Yesterday I took my daughter with me to visit my dad, and I wound up wheeling him outside into the courtyard area and stopped in the Gazebo. I was talking to my daughter, and when I looked back at my dad, he was nodding off. My daughter then surprised me by saying, "We need to pray for him." Keep in mind, we do pray for him every night when she does her bedtime prayers. But this time she wanted to pray for him right there on the spot. So we bowed our heads, and my five year old daughter prayed a sweet little prayer for him. So simple, yet so heartfelt. Then she asked if I wanted to pray, so I did. We prayed that he would be able to sleep better at night, and I prayed once again for God to heal him. When we finished, my daughter ran off to play in the grass.

A few seconds later, when my daughter came running back to the gazebo with a bunch of little flowers in her hand, my dad woke up with a start. He looked around like he wasn't sure what was going on. I told him we were outside, and pointed to my daughter and said, "There's your granddaughter," and said her name. She showed him the bunch of flowers, then took one out and gave it to him, saying, "Here ya go. One for you.." which he was suddenly able to take without any problem, then she turned and gave me a flower, saying, "And one for you." Then gave one to him again, then me, and back and forth until they were all gone.

Then my dad's facial expression changed, and he put his hands on either side of his wheelchair and moved his legs and feet in such a way that I figured out he wanted to get up. I moved the leg rests to where he could put his feet down, then I got on one side and my daughter got on the other, and we supported him while he very slowly stood all the way up. He very nearly stood on his own, but not quite. It was so close, though. Oh so close. I sat him back down, then I let him try two more times. He was very determined not to sit back down the third time, but since I could feel him beginning to lose his balance, I didn't want to chance him falling, and my very attentive daughter ran inside to get one of the workers to come and help, so I could get him all the way back into the wheelchair (he didn't want to sit back but wanted to stay on the edge).

I was amazed. That's the first time in several weeks he's been able to get up out of his wheelchair, even with help.

My brother told me that when he went to visit my dad the other day, that my dad seemed to be doing a little better, and that he was actually able to have a halfway decent conversation with him. It made me feel good to hear that. That part I didn't get to see while I was there, though he did seem more attentive than he had been, and was able to say a few words here and there in response to me, but I was thankful he was able to stand. That probably felt so good to my dad.

Who knows what might happen next time. All I can do is trust the Good Lord with everything, no matter what happens. He is in control, and it's all in His very capable hands.

Thursday, May 17, 2012

Shame "off" you

I was listening to a preacher on the radio talk about how he had counseled so many people that dealt with their pain for a very long time before finally asking for help. He said, in so many words, that in this American society, it seems we have been taught in many different ways to feel shame about our pain; to hide it, internalize it, pretend it isn't there. The feeling we get from most of those around us is that showing our pain means we are weak somehow, that we don't have what it takes to deal with it and be stronger than our pain.

It's sad, really. Pain is a normal part of our human existence. Not that we should wallow in it endlessly, but one should feel free and unashamed to express one's pain, save a completely inappropriate situation for doing so (a business meeting, for example, though expressing the pain of boredom might be a much more appreciated freedom at that time). Our expression of it should, as well, be met with open arms, plenty of empathy, a listening ear, and a genuine acknowledgment of the pain, not a "hush-hush now, pain is not allowed, it will all be okay so don't worry" attitude. After all, if we hide it and don't talk about it, aren't we, by our inaction, wallowing in it endlessly on the inside? Because talking about it, getting it out in the open, helps us to deal with it. One can't "deal" with something that "isn't there," after all.

Of course, one has to be careful not to go to the other extreme and make the pain ALL one talks about, 24-7. That's a good way to alienate those around us. We all need a break from pain now and then to breathe, or at least let those around us breathe, and talk about something positive and uplifting, something that will give us hope again, even in the midst of our pain. Imagine a book where the entire story is about a woman who does nothing but cry, talk about how hurt she is, wail, sigh, yell, scream, talk about how unfair it is, then cry some more and she doesn't stop until the end of the twenty-chapter book. You might survive the first chapter, but after that you'll either put the book down and regret buying it, or keep reading and start pulling your hair out, one strand at a time.

I thought it was so interesting how that radio preacher ended his teaching. He told those in his congregation, "Now turn to three people and tell them, 'Shame off you.' "

It made me realize how much I internalize my own pain and feel shame when I want to express it. It has been quite painful watching what Alzheimer's disease has done to my dad, and yet, I have only allowed myself to talk about the actual pain of it on occasion. I tend to want to avoid pain, and I guess I have assumed other people feel the same way.

But I need to break out of that tendency and allow myself to express my pain more openly, without shame, especially in this Blog. After all, I started this Blog for two main reasons: 1) To have somewhere to express my thoughts and feelings about my Dad having Alzheimer's and everything that entails, and 2) To give others out there who might be dealing with something similar a Blog they can relate to, and be encouraged by some of the same things that I'm encouraged by.

On that note, I would like to share what happened this morning. Just before I woke up, I was dreaming about my dad. In the dream, he was better again to the point of being able to go home (his home) during the day, and would only have to be taken to the assisted living home at night, to sleep. After being home during the day for only a couple of days, the color returned in his skin again, he gained some weight back, was happier, could walk again, and was able to communicate better again. In the dream I was talking to someone (not sure who) about how happy I was that my dad was able to be home again during the day and how much better he was doing as a result. It seemed so real, I could literally feel the tears of joy welling up in my eyes. Then I woke up, and realized it wasn't real. And it made me so sad. It hurt. I hate seeing my dad have to live in an assisted living home 24-7 and the effect it has had on him--though I am thankful for the small blessings like a friend of his working there now.

When my husband woke up, I wanted to tell him, but there it was again--that "shame," of not wanting to share the pain. I could feel myself starting to cry, but I pushed it back down. I didn't want to get out of bed, and overslept some. I felt so tired, despite a good night's sleep. Later while pouring myself a quick bowl of cereal for breakfast and my husband was in the kitchen getting his own breakfast (he likes to make his own on work mornings so that I can focus on getting myself and my daughter ready to take her to school), I finally shared the dream with him. He gave me a quick (albeit genuine) arm rub and said, "I'm sorry," but then had to finish getting ready for work. I didn't let on just how much it hurt, and pushed back the tears again.

I can see it will take awhile to break the habit of not wanting to share my pain, of wanting to push it down and pretend it's not there. Even the Good Lord in Heaven wants us to share our pain with Him, even if He does know about it already. All you have to do is read the Book of Psalms in the Bible to realize that, not to mention others in the Bible who cried out to God in their pain.

And oh how thankful I am to God for the many ways He gives us comfort... through people, through His Word, through situations. We may not understand the "why," of it all (and it's okay to ask Him "why," by the way), but in His perfect wisdom He knows. We just have to rest in Him and remember that one day, the pain will all end, forever. Until then, let's not be afraid to share our pain. We'll get through it, together. ;-)

Sunday, May 13, 2012

Friday's visit - moments to cherish

When I walked into the Alzheimer's/Dementia unit at the assisted living home with my daughter Friday evening, we found my dad in the dining room along with the other residents, sitting in his wheelchair at a table, waiting for dinner to be served. Or at least sitting there waiting for whatever might come next. My daughter and I tried to greet him, but could not get him to make eye contact with us or acknowledge us in any way. He remained focused on the table in front of him, saying nothing, not moving a muscle in our direction as I hugged him and leaned down to look in his eyes. We sat down at his table, my daughter in the chair on his left, me directly across from him. Another resident was sitting to his right.

I watched him as he focused on the space right in front of him and began folding the edge of the tablecloth up onto the table. As he folded with his fingers, which didn't seem to cooperate with him, his arms looked almost robotic-like, jerking randomly. It was difficult to watch, as up until recently, he never had any problems moving his arms or hands. I marveled at how determined he was to do whatever it was he thought needed to be done to that tablecloth.

When the food was served, he began to eat with his fingers. The dinner menu that day was fried shrimp, shrimp sauce, green beans, french fries, and a roll. He didn't eat much before stopping. I noticed he didn't have utensils, so I asked for some to be brought. The worker told me he probably wouldn't use them, and she was right. He didn't. He continued to use his fingers.

My daughter, bless her heart, started feeding him food from his plate, one shrimp--or green bean--or french fry at a time, which he would take and eat, slowly. But it wasn't long before he stopped again and began refusing the food. Then the worker who is also a previous employee of my dad from years ago brought him a special nutritional "shake" that resembled vanilla ice cream and began feeding it to him. He took about three bites and then stopped.

It broke my heart to see how he has gone downhill in the past few weeks. He looked so much weaker, frailer, thinner. His shoulders now hunch over a little, which is something fairly new. He was never the type of man to hunch. And it concerned me that he didn't seem to be able to acknowledge us at all. Had he lost that much ground since the last time I saw him about two weeks ago?

But then I was reassured when, the longer we sat with him, the more responsive he started to become. He finally began responding to our worker friend, using words we could clearly understand, even if it was only a few words. He even looked up at my daughter a time or two, and smiled a little at her, the kind of knowing smile that made me think he might know who she was.

Then as we were leaving and saying our goodbyes, I breathed a sigh of relief to myself when he responded to me, too, not only with words, but with body language as well, and looked up in my direction. Funny how you become so hyper-sensitive to body language when the spoken word is no longer your primary source of communication. I cherished that moment, those few simple words he said to me--"Okay," and "Bye," and "Love you, too." The sound of his voice was like music in my ears, and I grabbed that moment and held on to it tightly. Almost as tightly as I hugged him.

Thursday, May 10, 2012

Small Update

I haven't been able to visit my dad for the past couple of weeks due to my daughter having a recurrence of strep throat (I was waiting to make sure I didn't get it so that I didn't expose my dad to it), but got an update from my step mom.

Apparently he is slowly losing ground, and it looks like he will have to keep using the wheelchair. We had hoped the issue with weakness in his legs and/or feet was only temporary, like it has been before, but it doesn't appear to be this time.

One of his doctors has also tried adjusting his medications (again) to help balance things out more so that he's not as sluggish, but every time he does, my dad becomes difficult and agitated again.

I would appreciate the prayers of anyone who might be reading this. I'm planning to go visit him again Friday afternoon.

I have more to share, but will save it for another time.

Saturday, April 28, 2012

Friends in high places

It helps to have friends in high places.

Friday afternoon, I went with my daughter to visit my dad and as we were walking in, I held my breath, said a silent prayer that this visit would go well, and let my breath out again. As usual, I wasn't looking forward to it. It is painful to watch my dad in the condition he is now--lethargic, unable to walk on his own, and barely able to communicate. And he recently had yet another fall, leaving a nice bump on the back of his head. Thankfully, no concussion.

As we approached the main entry to the assisted living facility, there was an unusually large group of non-Alzheimer's residents sitting outside in rocking chairs. They all smiled as they saw my daughter and greeted her, reaching out to touch her. I wasn't in the mood to greet anyone as my thoughts were on my dad, but I made myself smile and greet them briefly as we walked by.

Once inside and signed in, outwardly I was smiling and greeting the employees and residents there, but inwardly the human part of me was screaming, because I didn't want to be there. I didn't want my dad to be there. I wanted him back in his cozy home, so I could sit with him in his living room, and have a normal conversation with him again.

We found him in the dining area again, in a new wheelchair this time, sitting at a table with another resident, a set of play tools set out before them. My dad was simply looking down at his hands, which were trembling. He seemed to recognize me this time, or at least gave the impression that he did. But his gaze kept going downward to his hands again, where it stayed for most of our visit. My daughter began playing with the tools, and I put my arm around my dad's shoulders and asked how he was feeling. He didn't understand the question the first couple of times, but then finally understood and replied with something resembling, "Pretty good."

Then I noticed he kept doing something with his hands in relation to the long sleeve shirt he was wearing, and figured out that he must have been warm and wanted to take the shirt off, so--seeing that he had another shirt on under that--I helped him take it off, which was quite the feat since he wasn't sure what to do with his arms. It was then that I realized that the shirt underneath that one was also long-sleeve, and a thick one at that. Under that, he also had an undershirt on. No wonder he was warm, even with his tendency to get cold easily. Outside, the temperature was in 80s, and the air conditioner was only doing so much to help.

Not long after that, he began trying to take off the second shirt, so I helped him take it off, which left him in just his undershirt, but then he was too cold, so he wanted to put the long-sleeve shirt back on. So I helped him get it back on, then it wasn't long before he was trying to take it off again. This time, he was trying to pull it over his head without unbuttoning it. After no success at trying to gently convince him not to take it off again, I figured a distraction was in order, so I gathered my daughter and we took my dad for a ride. This time, he had nice leg and foot rests, thanks to the new wheelchair.

One long wheelchair ride later (including a trip outside to the courtyard area), I went to look for someone to help me transfer him to an easy chair, and that was when I saw a friend. A friend who used to work for my dad many years ago, and who had worked as a sitter for my dad recently after he had just come out of the hospital. A friend who looked to be working as an employee there now. And indeed, she was! I was thrilled. I knew her to be a very detail-oriented type person who was good with the elderly, and had been good with my dad when she was his sitter. She would notice the little things that a resident might need. This was an answer to prayer.

My friend came to help me get my dad into the easy chair, but just as we were about to take him out of the wheelchair, the fire alarm went off. It was very loud. Both my daughter and I had to cover our ears. This was my chance to see if they would wait to evacuate the residents in that unit, or do it right away. A family member of another resident had told me during our last visit that they had waited to find out if it was just a drill first, and it had concerned me. Then I saw my friend jumping into action, coordinating with the other employees on shift in that unit, and everyone was evacuated immediately. So I had my answer. Either the woman the other day had her information wrong, or something had changed.

I was impressed with how quickly they managed to get all of those residents out. They only had a couple of glitches, which were quickly worked out. I wheeled my dad out myself, with my daughter by my side. They lined all the wheelchair residents up in a row along the sidewalk, and had the non-wheelchair residents sitting on benches or standing alongside them. Once they were all out, one of the employees did a roll call by visually checking to see if all the residents were there and checking them off with her pen.

Only one resident was combative, a woman, who kept trying to go back inside. An employee blocked her, body to body, linebacker style, saying a firm, "No!" It was the same employee who was doing the roll call. It was almost humorous to watch. Finally, after the persistent woman wouldn't give up and the employee was tired of playing linebacker, the employee took her firmly by the arm and took her for a walk down the sidewalk. Being a large woman can have its advantages.

When the fire drill was over, everyone was taken back in and things went back to normal. We left with my dad settled in comfortably in an easy chair. I will rest easier now in-between visits, knowing that my dad has a friend in his corner now who will have a personal interest in his care, and that when the fire alarm goes off, he--along with all the other residents in that unit--will be evacuated immediately.

Thursday, April 19, 2012

Tuesday's visit, and my concerns about elderly care

Tuesday afternoon, I went with my daughter to visit my dad at the assisted living home. When we arrived at about 1:00, he was sitting in the dining room area at a table alone, with a slice of Boston creme cake sitting on a plate in front of him. He was just sitting there, staring at the slice of cake. This was something I had not ever seen him do before. As much as my dad loves food, and especially sweets (and I say that in a very affectionate way because he is not overweight), it struck me that he was not immediately digging in. And I wondered: Why had none of the workers there noticed and tried to help him?

We said our hellos and gave hugs, sitting down at the table with him. I then asked if he wanted some cake and picked up his fork and put it in his hand for him, pushing the plate closer to him. At that moment it was like a light bulb went on, and he began to eat, just like any normal person would. One of the workers there then offered my daughter a slice of the cake, which was nice, and she was all too happy to accept. Personally, I passed on the offer, since I had had a Coke with my lunch. Then I noticed that my dad didn't have anything to drink with his cake. This did not make me too happy, since I knew he had been sitting there for awhile with the cake, and as I looked around, none of the workers were making the slightest move in the direction of bringing him a cup of water. I was not angry, just a little perturbed, because it wasn't the first time it had happened.

I said, "He needs some water," to anyone who might hear it and got up and went to get a cup of water from the water cooler using one of the cafeteria type cups they normally have available there, but found none.

One of the workers noticed I was looking around and said, "Do you need something?"
"Yes, he needs some water, but there are no cups," I said as pleasantly as I could.

She was happy to oblige, maybe realizing at that point that they had forgotten to give him something to drink, and went to look for one. To my surprise, they had trouble finding one. Finally, they found a cup and brought it over and gave it to me so that I could fill it with water, but couldn't find a second one for my daughter, so they came up with a Styrofoam cup for her to use. I was surprised that they didn't have more cups available. Sufficient funds surely cannot be an issue. It is quite expensive for a resident to live there. 

I guess the thing that concerns me is that there seems to be a general lack of attentiveness to the residents there. The lack of a drink is just one of many things I've noticed during my many visits there. Other times it's been a resident in a wheelchair crying out for help repeatedly but being ignored (I think I mentioned that incident in a previous blog post), or any number of other things. Many of the residents, including my dad for much of the time now, cannot communicate their needs properly. They have to have someone looking out for them. To "assist" them in having their daily, even hourly, needs met.

Another example that has concerned me greatly is that when the alarm in a resident's room or one of the bathrooms goes off, it is ignored. Not once have I seen an employee pay attention to an alarm when it goes off, or if they do, it is only after several minutes.

The very first time I heard one of those alarms going off was when I was waiting to use the public restroom in the hallway near the main entrance. There was an office near there, and I could hear the beeping sound with a computerized voice repeating every few seconds, "Emergency, emergency. Bathroom One." There was no-one in that office at the time, so I went and found a worker and alerted her to it, thinking that an elderly person might need help. Her reaction really surprised me. She stared at me with a blank look and said matter-of-factly, something like, "Yes, we're aware of it. We can hear it on our walkie talkies. We'll take care of it." She didn't even thank me. Then she went right back to what she was doing and continued to ignore it.

I walked away scratching my head, and finally came to the conclusion that maybe they knew something I didn't. Maybe residents accidentally pulled the string all the time. But I couldn't help but wonder what would happen if there was ever a real emergency.

Then on Tuesday's visit, while we were in the activity room with my dad, there was an alarm going off again, and this time the computerized voice was giving the name of the resident and the room number. It went off several times, with pauses in-between. Then it went silent, so I assumed it was taken care of. But a couple of minutes later, it went off again. A family member of another resident there and I exchanged glances and were concerned that whoever was needing help wasn't getting helped. I was just about to get up and go tell someone when I finally heard one of the workers yell at the top of her lungs to another worker: "(Name of worker), can you go check on Mrs. (name of resident)! Her alarm is going off."

The family member and I looked at each other again and she looked thoughtful for a minute and then told me that the other day, one of the residents had pulled the fire alarm and they evacuated everyone. Then she said, "But they didn't evacuate the residents in this area." (Meaning the Alzheimer's/Dementia Unit.)

I wasn't sure I heard her correctly. "What? They didn't evacuate the residents here?"
"No," she said. "They wanted to wait to make sure it was a real fire first before evacuating these residents."

My first thought was that they considered these residents less important. But then I thought that maybe they were concerned because these residents tend to want to wander off or get confused and combative.

Yet, it still bothered me. They could very easily take them all out into the courtyard area that was fenced in with a high fence. At least that would be better than being inside the building if there was a real fire with smoke. They would need the extra time to get them all out.

I can't help but wonder if the elderly, especially those with Alzheimer's or Dementia, are being treated with the attention and respect they deserve. I am sure that in most cases, it is not intended. We all can get immune to things after awhile if we aren't careful... alarms going off all the time, the constant needs of needy people, etc. But we need to be careful. They are people, with real needs, and they need to be taken care of and paid attention to.

I also wonder: Do people tend to care less about the elderly in general?

If so, I hope to change that by bringing it to the attention of as many people as possible. And it also just reinforces my desire to make enough money to one day open up my own assisted living home and make sure the residents there are well-taken care of, and never, ever, ignored.

Back to the visit with my dad, he is now having to use a wheelchair exclusively, and has been for some time. Funny, that particular wheelchair doesn't have the big wheels on the sides, only a set of four smaller ones, so he can't wheel himself around, and no foot rests, either. Apparently, it was the only wheelchair available at the time and my step mom has a better one ordered.

The recent change in his medication seems to have solved the issue with him wanting to use the restroom anywhere and everywhere and he seems much calmer; however, he is also much more sluggish and slow now, and doesn't make much eye contact at all. Getting him in and out of the wheelchair is quite the task, too, as he will say he's ready to get up, but then doesn't seem to understand how to bend his legs to do so, and won't try to get up until after several prompts. I guess it's either a choice between high agitation and inappropriate behavior, and a calmer demeanor and sluggishness.

My daughter wanted to wheel him around herself, but I had to insist on having her "help" me instead. We took him for a ride outside and visited there for awhile, and my daughter once again gave him flowers, which he smiled at and said, "Thank you." After a few minutes, he managed to say that he needed to go to the bathroom, so we took him after getting a worker to help, and after that took him for a ride around the facility. When I passed by the exit door, I can't tell you how tempting it was to just wheel him right out of there and to my van, but instead, I reluctantly turned and went into the activity room/resting area, figuring he might be ready for a nap.

First, I took him to a wing back chair and asked if he wanted to sit in it, to which he responded, "Yes. That would be good." (I am amazed by how well he can respond at times.) However, instead of getting out of the wheelchair, he just kept putting his feet up in the wing back chair. Finally, I moved him from there and took him over to an easy chair and after getting him in it, discovered that it had a broken foot rest, so a worker helped me get him back out of that one and into one with a working foot rest, which was no easy task.

I got him nice and settled in the easy chair with his feet up, and that's when my step mom came in for a visit. It was so good to see her, as we had not seen her for a couple of weeks. She checked his feet, which--I discovered--had been swollen, causing his toes to rub up against his sandals. She had brought antiseptic spray and sprayed his toes, which he winced at and complained, in his own way, that it bothered him. I can see why, too, as he had broken skin there, so she blew on them to cool the sting, then applied band-aids and put his socks and sandals back on.

When it was time for my daughter and I to leave, I leaned down to make eye contact with my dad to tell him we had to go, and he protested and said, "Noooo." I laughed and hugged him and said, "I know, I know. We'll be back, though."

He didn't hug us in response, but that was okay, I figured it was the medication and that he was probably hugging us back on the inside.

Tuesday, April 10, 2012

A singing child can do wonders

Yesterday I took my daughter to school, thinking it was the day to return from Spring Break, and felt like a big doofus when I discovered that it was a Teacher Planning day. At least I felt better that there were also other parents there trying to drop off their kids. Apparently we completely overlooked the extra line at the bottom of the class newsletter: "April 9th - VPK Holiday."

So I decided to just take her with me when I went to see my dad, not knowing what I would find with the newest developments in his behavior. I prayed silently on the way there that the visit would go well.

And it did.

A nurse had dropped in to change some bandages on some of the residents, including my dad, who had some skin tears on his arm. She and I got to talking about Easter, and I found out she was also a minister. I took her aside for a moment and asked her to pray for something specific for my dad and explained his history as the son of a Baptist preacher. She then prompted my daughter to sing songs to my dad, the first of which was "Jesus Loves Me," which the nurse and I sang along with her, and at one point we switched from singing, "Jesus loves me," to "Yes, Jesus loves you," directed to my dad. Prior to that, he was only looking down and not making eye contact with us at all, even when the nurse urged him to say Hello to us. As we began to sing, he slowly looked up at my daughter, who was standing directly in front of him, and his face lit up and he even began to smile a little.

What a relief to see my dad go from looking forlorn and hopeless, to happy and hopeful again. My daughter and the nurse then sang a couple more songs, and for the rest of our visit with him, he was much more responsive and lively. Then we guided him to the dining area, where I took out the Resee's chocolate Easter egg I had bought for him, as well as two other Resee's eggs so that my daughter and I could eat one with him. He didn't say a word, but his facial expression said it all as he enjoyed eating it and gave us a little smile.

It was so good to see him, and I was very thankful for such a nice visit.

Sunday, April 1, 2012

No visit this past week and not-so-pleasant update from step mom.

I haven't been able to visit my dad this past week due to my daughter being sick with Walking Pneumonia (which she is now just about over), but received an update from my step mom of two incidents, one where he reacted to one of the workers there and wound up knocking her down, another where he was relieving himself anywhere and everywhere BUT the bathroom, so finally they had a meeting to try and figure out what to do and decided he would need overalls with the front zipper sewn shut so that when they saw him looking like he needed to go, they could have enough time to get him to the bathroom.

It was hard to hear about both incidents, as they are so far from anything my dad would ever do in his right mind, and I feel so badly for the worker who got hit and knocked down. Once again, though, I lift this up to the Good Lord and put it in His hands, and continue to pray.

This week my daughter is off from school for Spring Break, so I will try to go and visit one day later in the week to allow for ample time to make sure that I have not contracted my daughter's pneumonia.

Tuesday, March 20, 2012

Truly at a loss for words.

 "Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9

My daughter is learning the above Bible verse this week in Bible class at school and quoted it to me today. It was something I especially needed to hear after the visit with my dad today, and it encouraged me.

Ever feel like you're at a loss for words? You know what you want to say, but aren't quite sure how to say it?

It takes on a whole new meaning with Alzheimer's. You are, quite literally, at a loss for words. Even if you do know what you want to say, you can't remember the right words to say it with. During the visit with my dad this afternoon, one thing really stood out to me. The quiet. The quiet caused by Alzheimer's. The eerie, lonely quiet.

Even when my dad spoke the few times that he did, it was still "quiet," because the words didn't make sense.

I felt weary of it all today, not only the quiet, but also of my dad having to be there at all, in the assisted living home, with others who had Alzheimer's or dementia, with the awful smells, and the gut-wrenching sounds of minds gone mad or emotions run amuck.

"Mr. A" was especially belligerent and moody today, yelling at another resident there. A resident who somehow got her hands on a cookie from the cookie tray being passed around at snack time, a cookie she wasn't supposed to have due to her swallowing issue. But she probably didn't remember she had a swallowing issue, and even said, "Why not?" when the worker that was taking the cookie away from her told her she couldn't have it. When "Mr. A" saw that the woman was fighting the worker and wouldn't let go of the cookie, he practically ran over to her with his walker and started to threaten her (she was in a wheelchair, by the way), but the worker told him to calm down and go sit down and she would handle it.

He calmed down for a few minutes, but just as soon as the woman (who lost the cookie battle, by the way ~ the worker crumbled it in her hand) wheeled herself to a table not far from Mr. A, he walked over to her and started yelling at her again, and the worker had to calm him down again. He finally walked off in a huff and said he was going to his room. "Good," I thought to myself, not wanting my daughter to hear his yelling and name-calling anymore. But at the same time, I felt bad for him. It wasn't his fault, at least not totally.

I wanted to take my dad out of there today and take him home with me, and make it all go way. All of it. But of course, I could not. He needs to be there, for his safety. It is not ideal, but there is no other alternative at this time.

Do you have loved ones you can talk to today? Talk to them. Talk a LOT. Spend time with them. In your cozy home or theirs. If they have done something to hurt you, forgive them, and talk. It is a precious gift.

Wednesday, March 14, 2012

Dancing in the rain.

Yesterday's visit with my dad was like being in the rain, instead of a storm. I tried to dance in it. Sometimes, you are thankful that it is "just raining."

When I arrived with my daughter at the assisted living home at about 12:45pm, I held my breath as we pushed the doorbell of the Alzheimer's living area and waited to be let in. I was hoping to find him doing well today. At first, we couldn't find him, so I enlisted the help of a worker there, who checked a nearby room to his own and found him in the bathroom there. When he came out and saw me, at first I cringed at the sour look on his face and lack of recognition of me, but then suddenly, it was like a light came on, and his face lit up and we hugged. My first little dance.

Almost immediately he said, "It's been awhile." I did a second little dance, because I was amazed that he realized it had been longer this time between visits. Then I did another little dance as I noticed he was walking much better again, and without his walker. I mentioned it to the worker, who said that he had been walking much better for awhile now. I directed him to some comfortable chairs in the carpeted hallway, lined with plants and various end tables and made to feel somewhat like a living room. We sat and "talked," as talking goes for those in this stage of Alzheimer's. He actually responded to a few of my questions appropriately, though. When he tried to talk to me, however, I couldn't understand what he meant, so I had to just pretend that I did.

After a few minutes, my daughter asked if he wanted to go for a walk, so I figured we would take a stroll to the courtyard outside, and my daughter picked a flower and gave it to him. He received it with a smile. I danced yet again. My dad quickly became hot, though, since he was wearing a flannel shirt and it was a warm day, so back inside we went after only a few minutes. I was glad to see that my daughter was able to have a decent visit with her grandpa this time around, and that the other residents stayed pretty calm for the most part. Well, except for "Mr. A," of course. At one point he started yelling, convinced that the chairs lining the wall in the activity room needed to be moved or they were going to take the paint off the walls. I tried to see the humor in it as a worker there quickly calmed him down.

During the visit I noticed that the end of my dad's nose was quite red. I asked him if he had bumped it on something, and he nodded and said, "Yes. It did." Later I found out from my step mom on the phone that they had noticed it when they had woken him up the morning before, except what I had seen was actually much better than how it had looked the day before. She wasn't sure how he had done it.

We visited for about 45 minutes, then had to leave since my daughter was getting quite restless. One of the workers had to take him to his bathroom to get him "changed," and I figured it would be a good time to go. I tried to give him a hug, but he wouldn't stop walking. He was on a mission. But after we said our goodbyes and started to head for the door, he suddenly turned around and looked for us. I walked back and tried to give him another hug, but he turned back again and started walking, and wouldn't stop. I looked at the worker and we shrugged shoulders, and I just went ahead and left at that point, telling him we would see him later. Maybe somehow he knew we were leaving.

Thank you to anyone out there who might be reading this and praying for him. I appreciate it more than you could ever know.

Tuesday, March 6, 2012

My dad looked older today; not walking as good anymore

My dad's walking seems to have taken a turn for the worse again. Today he was having to use his walker to even just balance while standing up, and when he did walk, it was more of a shuffle. He tried to pick his feet up, but was only able to mostly drag them.

He was in his room with my step mom when I arrived. She had arrived right before me. He was sitting in a chair with his head dropped down, and at first, I feared the worst, but when I looked at my step mom, her facial expression told me all was okay and that he was only sleeping. I walked to his side and put my arm around him gently, so as not to wake him up. My step mom took out a can of chocolate-flavored Ensure then, and woke him up so he could drink it. He was all too happy to oblige. Apparently it's one of his favorite drinks.

He didn't look so good today. It's hard to explain, but his overall appearance seemed older, more tired, and weaker. He didn't light up with acknowledgement of me like he normally does, I could see confusion in his eyes when he looked at me as I greeted him. But maybe somewhere, deep down, he knew who I was. I can only hope that it was just another bad day for him, and not a worsening of the Alzheimer's, or that his body is just starting to give out. I always hold out hope that the medication he's on will stop the progression of Alzheimer's at some point. It certainly can't cure it, but it can help slow it down.

Saturday, March 3, 2012

Another trip to the E.R.

This time, thankfully, it was just a urinary tract infection. He went to the emergency room Thursday morning because they saw blood in his urine. He was back at the assisted living home early that afternoon, with a prescription for antibiotics. So far so good, the blood seems to be slowly clearing up.

He was asleep when I went to see him in the E.R. on Thursday, so I went back yesterday morning to the assisted living home. It wasn't one of his better days, so we mostly just sat in silence, but every now and then he would look over at me and smile and nod, and reached out his hand for mine a couple of times, took it, and kissed it. I am always so thankful for those moments.

Tuesday, February 28, 2012

Mornings are definitely better

This morning was cloudy and drizzly as I drove to the assisted living home, reflecting the dread I was feeling about going. I was looking forward to seeing my dad, of course, but not the condition he might be in, nor the condition of the other residents there. Me being the merciful person that I am, tend to project myself into their pain, and it is hard not to want to walk around and comfort each one of them when I am there. I want them all to be healed so badly, for the madness to stop, but of course, that is not up to me. Instead, I pray for them every day, if not more than once a day.

I have to admit, I have struggled at times with wanting to know why. Why my dad, and why anyone has to suffer with that kind of disease. To have your loved one with you, yet not with you, at least not in the way they once were. To want so badly to communicate with them freely, yet not be able to, and instead be regulated to a few choice words once in awhile, the rest of the time being spent trying to understand them or trying to figure out what they want when they are agitated and demanding, yet not being able to satisfy them and trying to keep them calm, or... simply sitting in silence.

But as long as I'm on this earth, I'll never understand all the reasons why. God's understanding is not our understanding. His ways are not our ways. He knows the reason, has His Higher Purpose, and can see the beginning and the end. So I choose to trust Him, even when I don't understand. Not that I don't still ask Him to help me understand, for I can't help but want to.

Funny how that reminds me of my five-year-old daughter, who is going through the "why" stage right now. She wants to know the reason behind every little thing, and is not shy about asking. It can be exhausting trying to explain it all to her, and sometimes, there is no explanation, at least not one that she will understand. At that point, she just has to trust me.

About halfway through my drive there, I prayed that God would help me to face whatever I had to face today with my dad. I couldn't help but pray that the visit would go well today. I arrived at about 9:30am, and was pleased and relieved to see that he was doing much better again. He was back to his old self once again, and immediately recognized me when I walked in, smiling and giving me a tight hug.

Mornings are definitely better. And maybe God answered my request, too.

Most of the visit with him was pretty quiet. He stayed in the easy chair by the window in the activity room the entire one and a half hours I was there, relaxing, and would fall asleep from time to time. Being that he doesn't sleep much at all at night, I stayed mostly quiet to encourage him to sleep when he could, and just enjoyed being with him. Every once in awhile, he'd wake up and look over at me and smile, and a couple of times he reached out his hand for mine, and kissed my hand at one point.

When he was sleeping at one point, I struck up a conversation with a couple of the workers there, whom I am getting to know, and those same workers read some interesting stories from the newspaper to the residents in the activity room. One of the residents, "Mr. A," I will call him, had plenty to say on each subject. As I've mentioned before, Mr. A is a real riot, and keeps things interesting there.

My dad would wake up from time to time and nod his head and smile in response to some of the conversation that was going on between me and the workers, and once or twice he looked over at Mr. A with an "amused" look on his face. It's amazing how, at times, my dad can be so despondent and non-responsive and appear to not even recognize us, yet at other times be so lively and responsive and, if it weren't for the communication issues he has, appear to not even have Alzheimer's.

During a quieter moment when my dad was asleep again and the workers were all busy with other things, I kept noticing this one resident there, a woman in a wheelchair, who kept making a sound that I couldn't really identify, but sounded to me like a deep, raspy sound in her lungs, like someone who had severe chest congestion, and when I watched her breathing (she was facing away from me but I could see her side profile), she was breathing quite rapidly. The workers would walk by her, one even asked how she was doing at one point, and they didn't seem to notice the sound. Finally, I couldn't stand it anymore, so I went and asked one of the workers about it. She told me that she had always been making that sound for as long as she could remember. I personally didn't recall her ever making that sound for the two months I had been coming there to visit my dad, but figured I must have missed it somehow.

There was also another sound I heard while there today, a really bizarre sound that I had never heard anywhere before, but the sound was coming from "around the corner," so I would have had to get up and go look for it, and since I didn't want to embarrass anyone if it was one of the residents, I just kept crinkling my brow every time I heard it, trying to figure out what it was. It was driving me bonkers. At one point when I had first started hearing it, I thought it was some type of machine, so I blurted out, "What is that sound?" None of the workers answered. I don't know if they were ignoring me, or just didn't hear me. When I heard it again, it started to sound more like it might just be an odd sound that one of the residents was making, so I resisted the urge to go find the source of it. I never did figure out what it was.

At about 10:45, my step mom arrived. My dad definitely recognized her right away and really perked up, saying, "Heyyyy!" with a big smile. She had a bag of clothes for him, so after greeting us and giving my dad a hug and kiss, she disappeared down the hallway to go to his room. When she got back, she put lotion on his hands, then on the top of his head (my dad is bald except for the back and sides of his head, has been since he was in his 40s), then checked his fingernails and clipped/filed where appropriate, and finally, gave him a piece of gum. My dad seemed to be used to the routine, as he appeared to anticipate each action and enjoy it.

She and I chatted a little and during the course of our conversation, she told me that my dad's doctor appointment yesterday was to review his medications, and that they had been changed again, though she wasn't sure if they had started him on the new ones yet. She also told me that he would no longer have a full-time sitter, but would still have a part-time sitter. Then she told me that he had had a pretty rough night last night and since she didn't want to say out loud what had happened, she moved only her lips to tell me (and showed me in one quick motion with her hand when my dad wasn't looking) that he had been biting himself on the hand, and I got the impression she meant he had been doing it over and over again. I cringed, and was so thankful at that moment that it was morning now, and that it was all over with.

Morning. A new beginning. A fresh start. Something to look forward to.

And one fine day, on that Celestial Shore, a very special morning. One you can fly to, one where everything will be new, and one that will last forever.

So thankful to the Lord for a good visit today.

Friday, February 24, 2012

A tough visit today

My plan was to visit my dad this morning, but I wound up not having time, so I had to go late this afternoon and take my daughter. It was a tough visit. He was agitated, quite grumpy, and restless. Communication with him was very difficult. He even got agitated with my daughter, something about her playing with a stuffed animal bothered him. There was one moment, however, when he was pulling on her shoe strings playfully, so I was thankful for that.

I don't think he knew who we were, though, or at least there was no sign of recognition except for one brief moment as we were leaving. At one point he walked into the dining room and sat at one table, then moved to another, and we sat down at the table with him. He kept wanting something from me, and I thought it might be dinner, since it was only about an hour away, but as it turned out, he was wanting the table to be set. He must have known it was getting close to that time, and was upset that it wasn't set yet, and that I wasn't the one setting it. 

Come to find out, through talking to the Sitter--who was the same one that was there last time I visited--my dad's medication has been changed. Something having to do with one of the medications having the opposite effect that it was supposed to have. I can't wait to talk to my step mom to find out more details. He was supposed to go to a doctor appointment yesterday morning, but because he had two incontinent accidents, he wasn't able to make the appointment, and the doctor's office couldn't (or wouldn't?) reschedule for the next day. His feet and ankles are beginning to swell again, so we are concerned, since that can be a sign of reduced kidney function.

The good news is, my dad is walking even better now. He doesn't need a walker anymore, or even a cane. I was amazed at how steady he was on his feet. I mean, before he had any of the falls, and before the kidney failure incident and hospital stay, he was having to use a walker. Before that, he had used a cane for a number of years, even before being diagnosed with Alzheimer's. And now he barely even needs a cane? Pretty amazing. The Sitter does, however, always walk right beside him holding his hand anyway, just in case he has a sudden relapse.

After just under an hour, it was time for us to go. I hugged my dad and told him we had to go and that we would be back later (later meaning a couple of days), and his expression suddenly changed and he reached out one arm slowly to hug me from his dining room chair (he was now sitting at a different table, satisfied that the table was now set and ready for dinner), and then my daughter came and hugged her grandpa. She then walked over to my other side and held my hand, waiting for me to leave, but my dad wouldn't let go and said he wanted to "do that for me," pointing to the chair near him. I told him we had to go and he frowned and asked in a stern voice, "Why!?" I tried to explain, but he didn't really understand, and after going back and forth with him a few times, I finally just had to leave, saying in a kind voice and with a smile, "See you later."

As I walked away, I turned back to look at him and wave again, but he had turned his attention away from me and his expression had become pleasant again. He was looking at the other two residents at his table, and at one of the workers there. It was almost like I had been inside some sort of "circle" when I was in close proximity to him, but as soon as I walked outside of that "circle," I was "gone" as far as he was concerned.

Overall, it was a pretty tough visit. Being the late afternoon hours, I was already expecting his mood to be worse, since those with Alzheimer's experience what's called the "Sundown Syndrome" (<--click to see the link with a definition), but I didn't expect it to be quite that bad. My next visit will be a morning one, to see if there is a big difference; if there is, then I will know today's tough visit was more related to the Syndrome; if not, then I will know that this is an ongoing thing, and that some days will simply be better than others.

Tuesday, February 21, 2012

A Ray of Sunshine

The visit with my dad today was like a ray of sunshine in the darkness of the past several days. He was even more responsive and alert, and very close to being back to his old self.

When I arrived at the Assisted Living Home, he was sitting in a recliner in the activity area. He was cat-napping at that moment, so I didn't disturb him and instead introduced myself to the Sitter who was in the chair next to him. She moved over so that I could sit next to my dad, then told me that she had worked for my dad at the technical center where he was the Director. I didn't recognize her, but that was because she had worked in one of the "far-off" buildings, on the outskirts of the main campus (the technical center that my dad directed was a rather large one).

My dad woke up after only a couple of minutes, and his face lit up with recognition of me. We hugged tightly, and when I asked how he was feeling, he smiled and gave a nod and said, "Pretty good."

The sitter and I had a nice chat while my dad cat-napped periodically in the recliner. She told me that, as his sitter, there were moments when she would see my dad's "fighting spirit," like he was trying to "fight" Alzheimer's with every bone in his body, so to speak. She also told me that sometimes he would get a certain look on his face that would remind her of a look he would get during staff meetings at the technical center. I thought that was so interesting.

At one point when my dad was fully awake, I decided to try giving him the birthday cards again. Based on what I had seen with him so far, it seemed the right time. This time, he opened the cards with no problem, and wasn't looking for a "third" page. He even seemed to be reading them, and responded with a smile and a nod. I read them to him anyway, just in case.

All in all, it was a very nice visit. My dad even joked around with me, something that hasn't happened in a very long time. I am so thankful to the Lord God Almighty for giving me this ray of sunshine today. Even if my dad is worse again the next time I see him, I will always cherish days like today.

Monday, February 20, 2012

We never know....

... if someone is praying for us, or if own prayers are being answered, or if it's a combination of both.

My dad is doing a little better now. My husband, my daughter, and I went to visit him on Saturday afternoon, and he was much more responsive. My step mom had already told me on the phone that he was doing a little better, so I was looking forward to seeing the improvements. Improvements. Not something you get to see a whole lot of with Alzheimer's disease. Usually, it is only a worsening progression.

As we entered through the doors, a worker told us he was on the couch in the sitting area near the TV. He looked at us as we approached and his expression said it all: he was glad to see us. He was still not back to his old self, but able to communicate again, for which I was oh-so-thankful. His legs were a little bit stronger, too. Still quite wobbly, but he was able to walk with assistance. And walk, did he ever. First, he wanted to get up from the couch and walk over to a chair in that same area, then back to the couch, then back to the chair, then over to the TV, then back to the couch. He was giving my husband and I quite a workout.

And he wasn't done yet. Next it was a walk down the hallway to his room, where he first wanted to sit on the bed, then in his chair there, then back on his bed, then over on his roommate's bed. Then he wanted to walk to the bathroom (despite having a Depends on), so we helped him walk there -- or more like, he went there and we held him up to keep him from falling -- then he stood in front of the toilet, but then turned and wanted to go into the shower and turn it on, which we couldn't let him do, of course. So we guided him with much effort back to the wheelchair and basically made him get in it, since it was time for him to go to dinner anyway (we had tried getting him in the wheelchair prior to that, but he wouldn't have it).

I thought about trying to give him our birthday cards again, but decided otherwise. He was very restless, so I doubt he would have been able to focus on it. Instead, I focused on him and asked how he was doing and feeling, and tried to read his body language and facial expressions very carefully to try and see if he needed something. At one point when he sat still for a few minutes, my attention to him paid off, because I was able to figure out that his back was itching him and he needed someone to scratch it for him. He tried to verbalize it with, "Can you do that?" It was only his body language that helped me figure out what he really needed.

I have recent experience with reading body language and facial expressions, after all. I have a just-turned-five-year-old daughter. :-)

Saturday, February 18, 2012

Sudden change in personality

 "And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away." -Revelation 21:4

The next day after my dad was released from the hospital, I went to visit him at the assisted living home. I had my daughter with me, and we stopped on the way to pick up a balloon for him, and a card "for grandpa" from her, which she signed, and drew a picture for him on the card.

When we arrived, we found him sitting in a recliner in the activity room, fidgeting with his belt buckle. When he saw us, he looked up but didn't smile, and said something like, "Oh, another good one," then went right back to fidgeting with his belt and appeared to ignore us. My daughter was excited to give him the balloon, but he wasn't interested. I gave him a hug anyway, and then tried to help him with his belt, but he resisted my help. I finally figured out that he must have somehow wound up with another resident's belt, because it was way too small for him and was impossible to buckle. I told him that, but he ignored me and kept trying to buckle it.

I explained to my daughter that he was trying to buckle his belt so that her feelings wouldn't get hurt. He finally gave up on the belt, and I told a worker there later that he had the wrong belt on.

My dad seemed so different from when he had been in the hospital. It was like night and day. He wasn't making eye contact at all, was frowning, and wasn't responding. Then he tried to get up out of the recliner, but couldn't push the foot rest down, so he put his feet underneath it and tried to push it down with his hands. I guided him to lie back in the chair again and manually picked his feet up and put them back on the foot rest, then used the handle on the side to put the foot rest down. It wasn't easy to convince him to do it, but I finally did.

Then I asked one of the workers there if he was able to walk again yet since being back from the hospital, and they said he was very unsteady on his feet and had had a mild fall again that morning, so they didn't recommend letting him stand. Meanwhile, my dad was trying to get up and wouldn't listen to my pleas with him not to stand until I could get someone to help me. At one point, when I was pushing on his shoulders once again with just enough force to stop him from getting up and explaining why he couldn't get up, he said, "Honey... I don't understand." I wasn't sure if he meant that he didn't understand what I was saying, or didn't understand why he couldn't get up, so I tried to explain it to him again, but to no avail. He continued to try getting up.

I asked a nearby worker to go get a wheelchair quick, so she did, and between the two of us, we convinced him to get in the wheelchair, and helped him into it. He finally did settle down some then, so my daughter then tried to give him her card. I had to help him open it, and when it was finally open, he looked at it with no reaction, like it was an object he was trying to figure out, then tried to open a "third page," which of course didn't exist, yet he was determined to open it, nevertheless. My daughter and I both tried to explain that there wasn't a third page, but he wouldn't relent. Finally, I gently slid the card out of his hand and set it down next to me. I didn't bother trying to give him my card, I figured I would try again another day.

Then he started back with trying to get back up again, so I asked him if he would like to go for a ride. He finally relented, and off we went. I took him to his room and parked him near his bed, my daughter following behind with the balloon. I thought if maybe we were away from the other residents, he might focus more on us, but he only thumped at the balloon my daughter was trying to show him with a blank look on his face, then tried to get up out of the wheelchair again. I asked him what he was wanting to do, like maybe go for a walk, or use the bathroom, or get into bed, but he wouldn't (or couldn't) answer and just kept trying to get up.

I kept pleading with him not to try and get up to walk unless I had someone helping me, but he was very determined and wouldn't listen. Finally, I told him that I would feel very bad if he fell and got hurt, and it was then that he finally relented and sat back in the wheelchair, frowning. I breathed a sigh of relief and off we went to take him for another ride, my daughter by my side, helping me push, and we took him outside into the courtyard area. After a few minutes it started to rain, so we came back in. A worker came to him with his medicine to take, then suggested we take him into the dining room for a snack. He ate his banana pudding, focusing all his attention on it and not looking up at all, then when he was finished, he sat back and began to look at me, as well as his granddaughter, maybe even breaking a little smile, even if just for a moment. He knocked on the table with his knuckles and looked at me, so I smiled and knocked back, and he seemed to acknowledge that.

Then a worker offered to get some cranberry juice for my daughter, and she, in all her child-like wisdom, figured out that she could make a connection with her grandpa by taking a drink of her juice every time he took a drink of his water. She would watch him the whole time, and when they both set their glass down, she would let out an airy, "Aaaaa," then smile, still gazing at her grandpa, and say, "We're drinking together, grandpa!" It made me smile. It helped me at that moment, because I had just begun to cry quietly, trying to hide it so as not to upset my daughter. It was so hard to see my dad like that. Oh how I miss my dad, the dad I had known all my life. The dad I was able to communicate freely with.

I feel like I've already lost my dad in many ways, and I'm grieving that loss. I look around at the other residents while I'm there, too, and feel pain for them, and can't imagine the pain they are going through themselves. How very thankful I am that one day, God will wipe away every tear and there will be no more pain, and no more sickness.

Wednesday, February 15, 2012

Back Home

As of this afternoon, my dad is now back at the assisted living home and doing well!

I had a nice visit with him at the hospital this morning. His new "roommate" was quite the character (apparently the other man had been discharged). He was slightly combative and paranoid, convinced that the hospital was fake and that he didn't need to be there. His wife came in at one point, and after he machine-gunned a series of accusations about the hospital and staff to her, he then asked in an accusatory tone,

"Is this a psychiatric hospital?"
She said, "They have a psychiatric wing here."
"Really?" he said.
"Yeah. And if you don't behave, that's where they'll put you."

Then at another time, after he had taken a drink of water, he asked if she wanted something to drink, and she replied,

"No thanks, I'm trying to cut back on my drinking."

She had a great sense of humor, and at one point, I couldn't stifle my giggle. I'm not sure if her husband had the beginning signs of Alzheimer's, or some other issue, but she sure seemed to be handling it well with humor. I did overhear her saying to him that he had been talking crazy lately and that they were going to do a scan of his brain to find out if something was misfiring. I said a little prayer for him.

It was my dad's birthday today, so I wished him a Happy Birthday, and, with a lot of effort to think about what he wanted to say and then be able to say it, he replied, "Thank you." I had a card for him in my purse, but with all the commotion going on in the room, I didn't want to give it to him there. Tomorrow I plan to take him his card when I go to see him at the ALH, and I'll also stop by to get a balloon for him on the way there.

He smiled at me again today and took my hand and kissed it several times. They took the catheter out, then cleaned him up and got him ready for discharge. They were also going to make sure he urinated on his own at least once before letting him go. I had to leave to go pick up my daughter from school before they discharged him, but my step mom called later in the afternoon to let me know that he was then settled in at the assisted living home, sitting up in the chair in his room, and doing well. She said he kept reaching for my daughter's picture next to his bed and looking at it, and then my step mom handed the phone to him so he could talk to me. He seemed to understand what I was saying and said, "Yes," in response to me one time, then didn't say anything after that, but my step mom told me he had been nodding when she got back on the phone with me.

What a relief to know he is back "home" and doing okay.