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. ;-)

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.

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.

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.

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.

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.

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.