Fleeting Memories

The old John Lennon song comes back to haunt me when I get so far behind. You know the kind of feeling. You are on auto-pilot, not paying attention. The only things that get done are the necessary obligations, and the pressing emergencies that come from everyone’s distress. So it has been a month since I have sat down to type.
It has been a really hard month. It seems like each day I see a little more erosion of mom’s personality. She has no zest at all. She won’t even talk to me unless I really insist on a verbal response. More often than not I have to spoon feed her to get her to finish her meals.
I think the worst development in the past month is how I have come to really dislike my own reactions. I can get impatient with Mom when she “changes her mind” and becomes uncooperative in the middle of a transfer to the commode or while I’m trying to file her nails. I find my self raising my voice when she forgets to swallow her pills, while I am reminding her not to chew them. Of course the whole time she is saying, “I am not chewing it…” as she grinds away on a capsule. I know she is not lying when she tells me “I did swallow it.”  Her brain can’t fill in the gap between the pill in her mouth and my instructions. So she tells me what ever will make me stop giving her the pills. But that is not intentional, that is typical of the disease. Why do I get frustrated. I should be kinder.
Well, this is kind of a pointless post, isn’t it? But that seems to be the tenor of my times lately. It all feels pointless. Thank you to everyone who helps with Mom, who prays for her, couldn’t do it without you.
peace

This is the first family picnic that I have not included Mom. She is so withdrawn that the interaction at the dinner table or repeated movement from room to room seems to agitate her. The Fourth of July ended with her being frustrated and resisting everything. Struggling in the wheel chair as I brought her home she tore the skin on her arm. It took until last week to heel. I did not want to force a repeat of that day.
So I spent much of the day sitting with Mom, trying to engage her. Even though she admits she does not recognize what she is watching, it is hard to get her to look at me when the TV is on. Her speech is halting and she seldom finishes a thought, her voice is feeble and tremulous. She moans almost constantly, and swears she is making no noise when I ask her what is wrong.
If all that is not bad enough, tonight was the first time she let a portion of her ice cream melt and puddle in her bowl. She has always devoured her ice cream. These are the days that bother me most. Her physical condition seems unchanged, but her affect and interactions display serious decline. These kind of days make me a little sad. Well this is just a short note, so let me say good night. Peace.Technorati Tags: Mom, Alzheimer’s, melted ice cream, decline

I just never know which of my “moms” is going to show up on any given days. Last night she was angry and stubborn and the simplest task was an ordeal. Today, Mom was just as attentive and helpful as she could be. As I prepared to put her to bed, I asked her if she was ready. She looked at me and smiled, she then said I was handsome. Our bedtime routine was painless. I feel really blessed to be able to actually enjoy a few moments together.
Psalm 90:10 says that our last years are mostly toil and trouble. Some days I wonder what keeps Mom going, I wonder what she is thinking. She can’t express herself without getting frustrated because she just can’t find the words she wants. As she looked at her ice cream tonight, she asked, “is that my… my… yummy?” She enjoyed it even if she didn’t remember its name. Tomorrow she will greet her cheerios with the same salute.
May God be gracious to  each of us, that when our minds and bodies fail, I hope that we will find our delight in him. Good night all. Grace & Peace
Technorati Tags: alzheimer’s, age, ice cream, grace, toil, trouble

It seems to me anymore, that every good day is followed by a bad day. I am very grateful for the good days, the days when it is easy to take a breath and enjoy the little simple things. I am grateful for the grace that lets me remember the good ones. I need to remember when there is no time to take a breath, when just putting on Mom’s disposable underwear is an ordeal. I am grateful that, when Mom looks me in the eye with her “angry eyeballs” because I need to move her from the commode to her bed, I can remember that it is the Alzheimer’s that I am fighting, not her.
Most people have never seen Mom give anyone a nasty look. They always tell me what a sweet thing she is. And she can be so nice, very polite, gracious even. This past 5 years, since Dad died, she has pretty much reserved her anger for me. And when being stubborn and angry wont get her out of standing up, she turns on this panicked expression. When she looks at me that way, it will bring help from every corner of the room to tell me why I am expecting too much of her. When I was helping her into the car tonight after our family night at Swarthmore Pizza, Mom flung herself down across the center console and turned on the look. I told her she had no reason to be afraid, I helped her sit upright, I told her Alan could see everything was all right, so turn off the look. Her face softened, I got her upright in the car seat, buckled her in, and she said sweetly, “thank you very much.”
What scares me is the reality of what can come out of us, when our guard is down. Mom’s veneer of civilization is being eroded by her disease. And 90 percent of the time, even with her guard down, she is genuinely nice. But when she does not get her way, something else sneaks out. I ask myself what I will be like at 89? Will I be in a murky fog of dementia like Mom? More importantly, will I be nice even 75 percent of the time? When reason and discipline have lost to physiology and pathology, will my heart be filled with mostly good, or mostly bad? Mom does not listen well, when I read the Bible. She seems disinterested and a little impatient when we put a preacher on TV. But the old hymns still have a powerful effect on her, I like to start each day with the good old songs of faith. I hope that I will be mostly nice and love the old wonderful songs of the church when I am as incapacitated as she is. But perhaps that wont be necessary. Oh how I long to have this mortal to be gobbled up by immortality. How I wish I might see Him coming in the clouds. Instead of breaking down and wearing out, I want to be transformed, remade into the image of the savior. What a day that will be. But tomorrow is another day, and unless He comes tonight, I will need to deal with bandages and disposable underwear, lotions and medications, the stuff of everyday, one more day. So I am off to bed. Shalom

I just put Mom to bed. It was one of those evenings,  she was impatient with me for making her stand up to fix the bottom of her night gown. She has an elastic bandage on her arm, to keep her from messing with the dressing on her latest scrape. She keeps trying to unwrap it because she does not remember hurting herself. It was a real chore just getting her arm into the sleeve of her night shirt. She was not happy with me as I lifter her feet into bed and tucked her in.
Her skin is so thin and fragile, I have to be very careful not to tear it just moving her from chair to chair. Even picking up her legs to position her in bed is a precarious stress on her skin. We are using a new prescription lotion on her legs. In addition to being fragile they are very dry. Each day I have to wash her legs with plain water (there is a heavy residue after it is absorbed) and then put on the lotion.
And then there are her finger nails, she yells at me if I try to clip them, so I use a nail file and emery board. There is more, but no point talking about brushing her teeth or taking her dentures out. I don’t use a lot of toiletries myself, I have never fussed about my nails. So grooming Mom has taken me places I have never imagined myself going.
Sometimes when she is impatient with what I am doing, I think of how much easier it would be to just not do it. But that would be unkind than leaving her alone like she would have it.
I know this has been a rambling post, but I have been thinking how much we are like Mom as we react to providence. It is easy to confess that God has a plan for our lives, but how impatient we become when his plan is uncomfortable or ill-timed in our estimation. He does things for our eternal benefit, and we are just focused on how we feel right now. When we are tested and tried we no more think of his ultimate plan than Mom understands why I have her arm wrapped in the elastic wrap. Kind of embarrassing when you really think about it.
Well, that’s all I have time for right now, Pax!
Technorati Tags: Mom, Alzheimer’s, wound care, bedtime, providence, faith, impatience, grooming

I forget a lot of things. “Where did I put my keys? Did you see my phone? I know I put my sunglasses right there.”  Mom though, Mom forgets different kinds of things. She forgets how to swallow pills. She forgets that she is taking her pills, while she has one in her mouth. She forgets that she is standing up while you are trying to transfer her to a different seat. Mom forgets that the compression bandage is covering a wound on her arm and she takes it off to see why she has it there.
I worry when someone’s name (often someone I know well) disappears off the tip of my tongue. I worry that I should be taking the Alzheimer’s meds myself. I worry how long will it be, before the erosion of personality starts on me. That may be one of the biggest hidden tolls of taking care of Mom, the conviction that I am looking at myself in a few years.
Some of the things mom forgets makes my life more arduous, like when she forgets how to move her feet to get into the car. Some of it makes life less pleasant, like the toilet chores that are routine for me now. But nothing is quite as bad as the dread of what lies ahead. With Mom and Dad both severely incapacitated with the disease, genetically speaking, I feel doomed.
Well, enough of such pleasant thoughts this morning. I need to check on Mom. It is a gray rainy morning here, I hope yours is brighter, inside and out. Shalom for now.

Last week at this time, Nancy and I were between Baltimore, MD. and Winchester, VA. We were headed to our friends’ home in Elkins WV. We actually were away for about 66 hours. It is the longest respite interlude we have had in several years. It was great to be someplace else. It was great to be with friends that really understood our distraction. Ralph and Alice share their home with Alice’s dad.
It was complicated, covering all 66 hours. At times, I thought the stress of getting it all together was not worth the relaxation we would enjoy. There were even times that I could not help wondering how Mom was, and if I had done the right thing. It isn’t easy to disentangle yourself from the every day routine. While Mom could not have articulated the fact that I wasn’t home, (she never even remembers my name anymore)  I know that some things just did not go so smoothly for her.
There are some things we do, she wont do for anyone else. I am about the only one who can navigate a transfer to the car. So even if she can’t say “it’s good to have you back, Skip,” I know that everyone (including me) felt a little safer when our brief vacation was over.
I really enjoyed the mountains, I even enjoyed being whooped at dominoes, but I can only let down for so long. There is a comfortable safety for me in the ordinary and the routine. It is as if the frustrations of day to day stress is easier to shoulder than the uncertainty of not having my hand in Mom’s daily rituals. It was good to get away, but it is good to be back now.
That’s all for now.
SkipB

After yesterday’s post, I went searching for pictures of Dad. I found one that is just a little unsettling. It was taken around Christmas in 2002. When I looked at it, I could not help recognizing that look in Dad’s eyes. I see it in Mom’s frequently now. It is the confusion and fear that the dementia leaves as it isolates its victims. Once familiar places seem foreign and mysterious. The sound and motion of a room full of people does not bring any comfort or companionship. The coming and going and ambiguity of once familiar faces must actually increase the loneliness of this powerful deterioration.
It can be frustrating for the care-giver. When I try to spend more time with Mom, to engage her in more conversation, to reminisce with an album of old photos, I may actually be increasing her stress. It may leave her feeling more isolated and lonely because she just can’t remember.
It really is a terrible and dehumanizing adversary, stealing away its victims one face or one feeling at a time. Lord, have mercy on those who are loosing their faculties, and on those who love them and have to watch helplessly as they fade away. Yes have mercy.

Some times I just don’t know what to say. Last night Mom was pretty clear about who I was. Then I said something about Dad. Mom responded that she did not remember being married. I joked with her a little bit about how that would make me illegitimate. Well that only confused her. I grabbed the portrait of Dad sitting beside her. I asked her who he was, she said she thought his name was “Jim.” She also said she thought he was handsome.
I can’t help regretting how few pictures I took of Dad while he was with us. Alan took most of the pictures from those days. But I will always have my mental images. I will never forget the nights when Dad would walk into our living room and ask “if the people who own that apartment would mind if we slept there, it is getting too late to go home…” We never could convince him that it was his apartment, if it was after 9:00 pm. Dad’s sundowning was pretty extreme.
We moved Mom & Dad up from North Carolina almost 8 years ago exactly. We had decided we needed to do it after Mom was diagnosed with early stage dementia in the summer of 2000. We had no idea how bad things really were.
Dad has always been hard of hearing. He worked around noisy machinery most of his life. His inappropriate answers and mild confusion was always attributed to his hearing problem. The day we were finally able to move them into the new addition on our home, we learned how things would have to change. Dad drove back to my in-laws house. They had been staying with Dave and Jane for several months. Well, what should have been a 10 minute drive home turned into a 13 hour ordeal. Dad somehow ended up on I-95. He had a full tank of gas. He must have driven repeatedly between the New Jersey and Delaware borders until he needed to get off and get gas.
Needless to say, we could not let Dad keep his license. That was the beginning. The beginning of living intimately with the effects of Alzheimer’s. Some days frightening, some days very endearing, never dull, always a little sad, often arduous. But we have accumulated precious memories even as we have watched theirs disappear. Now if I can only escape my genes…

So, I just spent about an hour writing a new post. Unfortunately when I tried to delete a section, I deleted the whole post. So this is going to be an abbreviated version of what I really wanted to say.
I feel sometimes that my life is defined by the routines of every day. My apologies to Simon & Garfunkle for using there turn of phrase, but it is the ordinary stuff of life that “are the borders of our lives.” I am not just talking about the time I spend caring for Mom. I mean the whole lattice of insistent details that you can’t ignore. Everything, from a dishwasher full of clean dishes to brushing your teeth. I feel like it all has me corralled and fenced in.
It has been over a week since my last post. Which is probably a good thing for everybody. After all, who needs to read about rubber gloves and Lysol. You don’t need a dissertation on Swiffers and sweepers. It has been a deadening, dulling, disconcerting week. Nothing bad, but nothing good. Just a week of ordinary duties.
The only break in that week was the fourth. We spent the day with my in-laws. Dave & Jane, Nancy & I, and Mom: just the 5 of us most of the day. It was quiet, it was cool and dry, it was relaxing. Mom got so comfortable in Dave’s recliner, watching Ron Howard as an elementary school boy in Mayberry, that she was annoyed that we had to come home. She said she could sleep right there.
Since I insisted on moving her, she was going to prove that she couldn’t move her feet. She did a pretty convincing job of it. But I got her home. Yet not without mishap. While “flailing and hooting” about not liking her wheel chair, she managed to cut her arm on the way in the door. So now we have one of those slow healing wounds that are so much fun.
Sunday afternoon, Mom was pretty tired, too much excitement the day before, I guess. Well, she fell asleep in her own recliner, sprawled at a most uncomfortable looking angle. But while we were not looking, she had pushed down her bandage and scratched and rubbed her cut so that she, and her chair, were covered in blood. It was actually pretty grissly looking when I first saw her. But it was superficial, just messy. Now we keep her arm lightly wrapped in a long ace bandage. There is too much of it to push away. She can only rub at the outside. Hopefully this will give it the rest it needs to heal.

So that has been the highlight of this last week. I have not had many of those Peter Cottontail moments like I wrote about last time. In fact, it seems like it has all been exhaustingly ordinary. But we keep putting away the dishes and brushing our teeth, it’s what we do. So, I hope you can find something to savor within the borders of your life. Peace rjb