We've tried a new drug! Yikes!

Okay, this blog may not be for the faint of heart. Oh, no blood will gush nor will raving lunatics surround you as you read. But your heart may break or your compassion my gush forth uncontrollably - or you may just quit reading! So mote it be!

This is day two of the 12.5mg of the anti-psychotic drug we are using for mom to keep her in a place where she isn't inflicting harm to herself. We had tried it the first day the doctor prescribed it and hated the effects. She sleep all day in a complete stupor. So we switched the dose the the bedtime to see if the effects would be greater benefit without the drugged sleep, which was okay but didn't really help with the problem of picking at herself. Nor did it help with her overall agitation. So we decided to try the morning dose this week and give it more time to work for her.

Yesterday, day one, it went well enough. She dosed briefly before the family went to church. Once she has stimulation, she manages to stay mostly alert without dropping immediately into a sleep. She did seem to pick at herself far less - which is good since she has a temporary crown that is giving her fits and she has been trying to remove "whatever that is" at every opportunity. And we can't let her because the teeth might move, making it impossible for the permanent crown to fit. So the constant badgering by us toward her has made life a bit tense anyway. Back to the medication. Yesterday it helped noticeably (yes, still problems but less intense).

Today, day two, mom dropped off to sleep while we were all conversing at the breakfast table. She held her head in her hands and acted as if her head hurt. Of course, some of this is attributable to the chaos of four people engaging in animated conversation. But some was clearly drug induced. Then, when we moved to the living room, she truly wen to sleep in her chair. Sigh. I expected it. Meanwhile dad went to the loo and then he and Star had a conversation in the bedroom about "all of this stuff we are deciding and such". Mom woke up and went to the bedroom, I hoped, to help dad dress.

I have been working on finances and noticed she had been gone awhile. Half an hour by my best guess, maybe longer. I wen to check. She was just coming out of the loo, without her glasses and her hearing aids. She immediately went to the bed and laid down. Dad, by the way, had returned to living room (still in his PJs) and feel asleep in his chair.

So I asked mom to get up and get dressed which she was willing to do. Now we get to more drug stuff. She didn't know where the closet was (we were standing in front of it, wide open). I suggested an outfit and she agreed. So she put her shirt on. Backwards. I asked her to switch it and she giggled and did so. Inside out. But frontwise. So I asked her to try again. As she did so I realized she hadn't put on her bra, so we stopped. She tried to step into her bra and got tangled. She untangled and examined her bra. She folded it to determine front from back. Except it was sideways folded, as in profile. So I helped her put it on over her head. She was appreciative. Meanwhile I noticed the first shirt was stained so I tossed it in the clothes hamper and got another from the closet. No problem!

So, I left her to finish her dressing. 15 minutes passed. I went to check and she was on the loo again. I encouraged her to join us in the living room when she was done (she had invited me to join her in the loo). When she came out, I had to send her back in to get her glasses and her hearing aids. She did so and came out. Dressed fine. She declined to do the ironing that she often does (her pants) and wanted to sit. Dad is asleep in his chair. It is 10:30 and the medication reminder for him went off. He took his pills about 11:00. After toppling over his water bottle and his coffee cup.

He just took a phone call from the dentist and didn't say goodbye when it was finished, just hung up. Although this particular office manager mightn't have offered closure either. She is odd that way.

And at 11:20 in the morning that is the way it is. The 12.5 mg dose seems to greatly inhibit what is left of her initiative. Thankfully, she remains complacent and willing if asked to do a thing.

further bullet points because we need to get them listed somewhere.

Sigh. There is more to list. We have to track behaviour, changes inpersonality and so on. These aren't in any order particularly. I will note dates where I can.

• 07.11.09 Went into the folks' bedroom to lay out clothes for Mom. When I picked up her bra to put it on the bed for her, I saw that she had fecal matter on it. Since she puts in on by stepping into it, I am sure she rubbed against her backside as she put it on - or took it off.
• 07.11.09 I went to the store at 9:30 this morning. Dad was asleep as I was leaving and I woke him to tell him. I returned at 10:45. When I looked in on him, he was asleep. He had been awake because the paper was everywhere. I sat down with the folks at 11:20 and Dad was asleep. He has been asleep to this minute - 11:44.
• 07.11.09 The living room smells funny - I can't tell if it is Mom or cat problems.
• 07.11.09 Mom is still fussing and picking at herself. The dentist told Star we have to keep Mom's hands away from her temporary tooth or the permanent crown won't fit. We have to tell her to remove her hands from her mouth every few minutes. I have told her twice in the time it took to write this bullet point and the one above.
• 07.11.09 To make matters worse, last night my tooth started bothering me. Nerve. Root canal is in my future. I have been putting this off for a couple of years.
• 07.11.09 Star decided to hire in a parent-sitter for us last night, so we could go to kids night out. We were leaving them alone for brief periods of time, but with Dad's increasing frequency of falling, we have decided that they cannot be left alone. So we have to look for ways to keep our time away intact. Sharon came over. She was wonderful. Dad reports that she is a good listener. Nice, to have options.
• 07.11.09 Dad is still sleeping, talking in it, to boot! 12:07.

Time to make lunch for us.

Mom dumped trash on the car and too much is unknown.

The beauty of blogging may be that kindly advice and well meant suggestions are rarer here. For now, unless I develop a following. Two edges to that. Be read or be left to think in peace.

The last three weeks have been terrible. Unfair, unfathomable and remain unresolved. Where to begin. Bullet points, I think. To the purpose of documentation and release from my body.

• Dad has begun to fall frequently. His Parkinson's is progressive faster than anyone wishes (of course). In 28 days, he has fallen 5 times - once when neither Star nor I were home (grocery shopping) and only Mom to help him.
• Dad's voice strength is gone. He tries to project, but even if he gets his volume up to a discernible decibel, his muscles aren't forming the words well and it is all a blur. I mostly guess at what he says by context or visible clues.
• Star is so alone no matter how present any of us are to her. Being a primary caregiver is a lonely, heavy burden. (Which is not to say it is begrudged or put opn her or in any way a negative choice. But even carrying a bouquet of roses can be a burden if done for too long or without gloves to keep the thorns from the skin. I am just saying.) That tears at me, because it is not a condition any person of any status can change for her. A spouse, a friend, a lover, the President, a dog - no one could undo that condition. But perhaps any combination of those people could meet other needs for her. To that end, I remain her friend without question.
• Mom is inflicting injury to herself. She is picking at her fingernail beds and her face and her arms until the skin is raw or worse. And we cannot get her to stop. There isn't any reasoning and distractions can not last for more than a second. And the energy of our emotions lingers in her enough to make her disgruntled or frsutrated with us. Then she snaps at us or is defiant or is hurt. And somehow there isn't an answer.
• Tonight (July 9, 209) Mom just took off her shirt while we were watching a movie because she was hot. She had a thick afghan on her legs and feet, but decided to remover her shirt to cool down. Then, of course, was frustrated that I helped her put it back on. Can't blame her really, since it made her feel like her decisions aren't good enough.
• Which they aren't.
  
• She is sucking on her fingers. Sometimes to - I assume - take the sting out of the torn fingertips she has. Sometimes it is just to suck.
• She has taken to sticking her tongue out to feel the end of it between her fingers - like she is gauging the thickness of her tongue.
• Her willingness to go to adult daycare has stayed about the same. She goes but is exasperated when we get there if they aren't engaged in an activity. The daycare reports that mostly she seems content while there. They are not having any more success than we are in stopping the self inflicted hurts.
• Dad seems to be doing better now that his pain is managed better, but he seems to sleep more. Some days it appears to be all afternoon, other days it seems to be only frequent naps with alert spells in between.
• His feet are extremely swollen - because he isn't walking as much?
• Tonight he decided to walk back to the bedroom without his walker. Not a huge deal, I suppose, but the whole point of the walker is reduce the opportunity for falls.
  
• So, in an effort to help (mainly in an effort to relieve her chronic boredom so inherent in Alzheimer's), Mom decided to take out the trash. She removed the trash from the kitchen and carried it to the garage, using our indoor door to the garage. So far so good, except she hadn't secured the bag closed and then she tried to toss it over the ramp rail. The rail is about 4 feet high. She was trying to get the bag into the recycle bin because she thought that was the trash bin. And in doing so, the trash bag partially dumped onto the floor of the garage and onto the bumper of one of our cars. Sigh.
• We have been talking about finding a full care memory facility to place Mom in. We are being heartbroken repeatedly throughout the day and in our sleep. How do we agree upon a turning point - the point where we actually send her into someone else's care.
• We are getting great advice.
• I will blog that part of this process later. It is longer than this post in content!
• Mary is coming on Saturday. She is coming for several reasons but the one that she expressly stated was so that Star could get a vacation and so could Tom and I.
  
• And to top off the week, Star had to give out for adoption her little cat, Stubby, because he was causing her other cat, Marco to act out. Marco was so unhappy he had no choice but to get our attention. The decision was hard and seems to foreshadow the decision we will face with Mom and Dad. Yet, Marco is so clearly better with the littlest catlet off to his new adventures. Star is clear about all the reasons and such - but I can only imagine her growing sadness at all these changes.

There is so much more. Mainly we have agreed to increase the documentation of our journey. It is intended to assist us in knowing when and why we are doing what we do. And when it is time to change what we do.

Today has been hard. No question. May tomorrow be better.

We are transitioning into older old age - at the speed of too fast.

Today Dad fell. He didn't call us. He said he wasn't near the call button. He was standing, bending over to reach his slippers. He fell but managed to fall into a sitting position and didn't hit any furniture on the way down. He was near the bed. He managed with Mom's help (which is an unknown component, due to her Alzheimer's) to stand. He says there isn't any pain specific to the fall. Still, he had been planning to go shopping with us this morning but chose to stay home instead.

He has dozed all morning, which he has for the last few days. We linked initially to the change in his medicines since he wasn't sleeping well (many interruptions in the night to urinate). He has been having nightmares and our thoughts are that these may be due to his anxiety about the impending separation from mom when we have to face our reality and put her in an assisted living/full care memory loss facility. However, yesterday was his first day of full on (4 times a day) routine of pain medicine - I forget which one, Star knows - so it could be his pain meds making him sleep?

Don't know.

Mom is regressing quickly. She can't stop picking at her body to the point of causing bleeding and small tears in her skin. Her nose, her arm and her fingernail beds are the most abused areas. She just doesn't realize it, even when she is causing herself pain. It is a constant battle to keep her hands quiet and relaxed. She insists that she doesn't do anything or isn't doing anything... and she hates the band aids. Sigh. Her attention and comprehension are virtually gone. Even direct, slow communication is labored because she cannot follow. Yet, yet. She contributes spontaneously and on point just when it seems she can't stick with the general topic. Then, she says something completely non-related. She didn't recognize the butter dish this morning as being related to the pancakes we were having. And she usually is liberal with her syrup but today put it on the pancakes one teaspoon at a time. Seriously. But she specifically complimented me on the pancakes (calling them correctly, pancakes) and had four 4 inch pancakes. Go figure. Funny things she says: we were driving on Marshall Drive and she started to giggle and then commented how funny it was that the street was called Marshmallow Drive. Which made me giggle.

Sadly, the biggest change is that she can no longer perform even the most basic hygiene tasks. Yes, she can stand in the shower and she appears to be using the shower soap and washing her hair. There is no guarantee that she is actually cleaning her body properly, however. We recently had proof that she is struggling with frequent daily tasks like washing her hands after the toilet. I saw her go to the sink, three days ago, after using the toilet and rather than turn on the water and use soap, she picked up a washcloth, wiped her hands on it, leaving clear fecal marks on it and then lift the cloth to her face. Of course, I intervened, but what about when I am not there? And she has open sores from all the picking at herself. And she wants to help set the table and serve the food and so on. She is having daily incontinence when she wakes and we are not sure if it is solely urinary incontinence. Star has seen a roll of toilet paper thrown away with very clear finger marks on it that were made with fecal matter. Is she cleaning herself with her fingers? We just don't know.

So what is really going on? Well, it is hard to say. Star and I are exhausted. She has been doing this in one fashion or another for three years. I am coming up on my one year. Granted, I came in just as they - mom and dad - began to go down the back side of this hill. Which is hard - like coming into the middle of a private conversation and trying to figure it all out without interfering in the conversation and without intruding. Yet, having been welcomed to participate in the conversation, also trying to contribute real meaning. Both of us are beginning to snap at each other. Oh, not in the scary way or in disrespect, but in the way that means we are out of listening patience and processing patience. Thankfully, we see it and are paying attention. There is no way to truly get respite from this burden (willingly and lovingly accepted by each of us) for a real rest. Real rejuvenation. All we can do is look to the day when it will be different. But that day doesn't have one or both parents in it. So, that day is also begrudged.

The house is in turmoil emotionally because we have all identified the line in the sand that was the point where we will have to put mom in a facility. So I feel guilt (not the bad person kind, but the despairing no where else to go kind) and pain and concern. Mom is not without her intelligence but she is without a means of using it. Which is hard. She is so alone in this journey and we miss her because she is gone and she misses us because she can't find us. And we are all in the same room.

I worry that I am letting Star down. That my coming into the household was supposed to somehow make the time with mom longer and better. I know that it has. I know it continues to and I know that it will do so while we wait for a bed to come available in a facility. But I still feel like I "should be a better friend". (I know, I know - you tell the feelings to get in line behind the thoughts!)

I am afraid that I am letting Tom down. That, as the demands of mom and dad aging increase, he'll feel more and more disconnected from our life together. I worry that resentment will quietly enter into our relationship.

I am not overly worried about these things, either. I mean, I have perspective and I know what I know. And we all work so diligently to be loving, appreciative and compassionate to each other and to ourselves. But that isn't what I am writing about. I am writing about the moments when time stands still and somehow it landed full stop on a fear instead of a hope. And inevitably, time resumes its course and balance is blessedly returned. But for just a second - it hurts.

Money is a factor in all this but that is another blog, another day.

For now we hope: that we can find a place with a relatively quick availability for mom. That will free up our energies to keep dad at home longer. And it secures our home for ourselves a little bit longer. We hope, pray and plead for the house in California to sell. Money in almost any amount will be considered liberating. We hope that we can find ways to keep dad at homw until he passes, which is his desire.

For now, it is the fourth of July and there is cherry pie for dessert tonight.

Breathing Through the Onset of Contrary Behaviour

This is my weekend on. Which simply means that I am solely responsible for the folks (unless something catastrophic happens, of course. In which case, Star is only a phone call away.). We both get one weekend away from home each month. It kinda works like this: we have a rotating schedule based on the hope and assumption that life remains constant and normal. We each have one night per week that we are off that does not change. Wow - what a difference that made in our relaxation and individual peace of mind. We have one other night per week that rotates and a mutual night out - because being together as friends is also important. Additionally, we try to remain flexible in our lives for various activities like doctor appointments for ourselves, etc.

The other hours are shared time with the folks. We try to schedule time together with the folks to do whatever we can think of to bring

Chance in Attitude

Today I am feeling better and am feeling inspired. To what, I don't know. I am healthy again - mostly - and the weather is lovely. Okay, a bit hot to my liking since I think 72 degrees is just about heaven and it is working on 80 or more. But nice day, just the same.

I have engaged in the addictive pastime of Facebook. Which then activates my self discipline actions. I mean, I must tend to my farm, my cove, my messages, my app this and my app that. A person could forget to do anything else. So I only take quick breaks in my day to see what status my friends are proclaiming. And I choose to not log on once in a while. I even ignore requests.

And as a reward to me, old relationships are re-established and flourishing in the liberating venue of online communication. Yes!

So what am I inspired to do then? To expand my blog to be about all my life not just the overwhelming bit that is Alzheimer's and Parkinson's and being weary. Hah! So this is about Alzheimer's and Parkinson's? Don't be ridiculous. It never was about those. It has always been about me. And what I think or don't think. How honest I am and how public I am about my honesty. Which is only partly so. I conceal quite a bit. After all, who might be reading this?

Until now. It is time. So, I will post, this month, my goals. I will write about my life in no particular order with no particular amount of detail. Some days may be too much information and others leave you wondering. But that will be because I am doing the same, I guess.

I have spent a great deal of time wishing. Hoping even. Longing sometimes and lots and lots of time visualizing. That is a great time waster. Make no mistake, visualizing is a terrific tool. But it becomes a crutch. A little more action, please.

I have so many things to experience. So. Come along if you want to - but don't forget to tend to your own breathing.

when we have a cold, then what?

Today I woke up feeling sick. Like a cold or just bad allergies. I took allergy medicine and haven't felt relief. I really don't want a cold (who does) and so I took the night off.

I mean, it is my night off anyway. Which makes it frustrating that my time off is spent feeling sick. But life happens that way. I was planning to go with Tom to his networking group's bowling night, but I bailed at the last minutes (Which he knew I would and thought I should, smart man that he is.) My thoughts:

1) Rest is nice.
2) I need to be sure that I am not sick or, if I am, I need to stay away from the rest of the household. The folks can't fight off illness very well. So, bed or sofa is a good idea.
3) nope, that's it. Just two thoughts.

I am going to bed when I really want is to figure out how to automatically link this blog to by Facebook page. But rest sounds better.

Sigh.

May 9, 2009 Southview Adult Daycare

So today was a good day, overall. Mom went to adult daycare to "volunteer" with the old folks. She plays hymns for the devotions and they have activities and lunch and more activities. Today we joined her at 3pm for a little Mother's Day celebration, a tea. Southview Adult Daycare is such a loving place. I cannot believe Star found it, thanks to her determination to secure the best quality of life possible for all of us.

Dad got to see the facility for the first time and seems pleased, although we haven't really talked with him about it. I am working on family photos to take to Southview to add to their family portrait gallery, which really helps make the daycare feel like a home.

I think that is what I like best about Southview. It is cheery and small and cozy. Hugs are generously supplied. I can see from the front door to the back door and it is clear that this place is not only safe, but it is free. The adults can do as they please - even if a planned activity is scheduled. But the women who work there make it so inviting for them to all participate that they mostly do.

I am welcomed there. They are glad to see us in whatever grouping we are that day. It is a place of engaged living. I like that the most. And that mom doesn't balk at going (although she continues to be unclear about why or how long she will be there each time we go.) is a great gift to us. Sure, she still would rather stay home, but it seems that having a purpose to fulfill and promises to keep give her a boost too. It won't last. It doesn't last. But there are moments. She masks her discomfort so well, though, that I have to keep retuning my mom-meter to discern real feelings and such. Not easy with the aging process, harder with Alzheimer's, hardest with a woman who has had a public facade for over 60 years.

I don't know even if this is at all important. Partly it is an exercise in writing something everyday. Partly it is genuine relief that some daycare facility is there to give us all the break we need in our daily lives. 2 days a week is our choice, but it may have to increase as the Alzheimer's progresses. And then there will be other decisions made up to and including full care facilities. But for today, it was a good day.

Did I mention the moms at daycare wore hats for the Mother's Day tea? Yup. And tea and pie was served on lovely china, with the men joining us in good humor (pie is always a good mixer). Mom looked so very beautiful in her white straw hat with 3 roses tucked in the band at the crown. The hats were of all varieties, including a few spontaneously boa bedecked jobs that were deliciously reckless in their silliness. But in each woman, when we wished them a happy Mother's Day, there was a gleam. They remembered, to whatever extent, motherhood. And the smiled.

It was a good day.

Nothing and Everything to Say

I got nothing to say. And I can't say it all at any given moment. Do I write about my dreams or my fears or my weight loss routine? How about what today looks like literally? Emotionally? Spiritually? I am not trying to be erudite, or even intriguing, or even provocative. Rather I am trying to convey the middle mush of my mind and the lower than suggested levels of energy that is the daily life I have chosen to lead.

I am so glad I did this. I am sorry for why I did this. This being our joining this household for the express purpose of providing informal caregiver services to this second set of parents and to help one of my oldest - and of course, dearest! - friends in this awful, wondrous journey of elder care.

I am glad because it is needed. How the hell do people who have children at home, are still in their full time careers or who have limited resources manage? The retirement income dad has secured for himself and the foresight to pay for long term health insurance for mom has made it possible for this family to go through this aging process relatively financially unchallenged. And as I write that I think of all the issues that are not addressed in our world. When do we move into assisted or nursing care? As opposed to my informal care giving? When is it okay to say I have reached my limits of service? Be clear, I am not talking about my limits of love or appreciation or familial service, but of care taking service. Thankfully, I am not there yet, but I can see that light at the end of the tunnel and it is a train and it is daylight.

I am sorry for making this decision because it means I was not able to be so involved in a successful business venture that I couldn't say yes to this family. How weird is that? That my availability to serve - and that of my husband - coincided with this need? The universe is funny that way. But I am still sad that we weren't in the midst of a thriving career that sparkled with all the trappings of success. It feels like we were destined to be here, I guess, which lessens the sadness at not being somewhere else.

I have dreams about owning my own home, perhaps on a little piece of land. Maybe in Minnesota, maybe not. I have dreams about traveling and writing and leaving a legacy. I have dreams about being significant enough that I am in a history book someday. And I have fears, too. That I won't have achieved any of these hopes and that it will matter that I didn't. I fear that I won't have achieved any of my hopes and that it won't have mattered that I didn't. I fear that I am wasting time and life and that sacrifice isn't really valued.

Weight loss is a funny thing, speaking of hope and fear. I know that I am need to lose weight. I fear that I am too late. Too late to stay clear of the influence weight, especially being overweight, has on memory, the aging process and general health. I hope I can find the balance between how I feel inside and what I look like outside, and that my health benefits. And yet, I refuse to compromise my daily life overly much for the sake of my hopes or fears. I struggle to find a balance between my efforts ( I am continuing with a weight loss plan) and actually enjoying activities that support my goals. I will not compromise on the art of living, the quality of living that I choose. So, I will find a way to add activities that enable my life to be full on good. Hmmm, that sounds great and feels good, too. Good.

So what does today look like? Busy, challenging, long and not long enough. We have already taken mom to the doctor to decide if she has a bladder infection or is just not remembering that she already used the toilet. Regardless, we find her in the bathroom with increasing frequency and, since we can't know for certain why, off to the doctor we went. Then when we came home with a "hat" to catch a urine sample to bring back to the doctor's office, she emptied it before we could go in and transfer the sample to the cup. Argh. So that is on the list to do - to go with her on one of her trips to the loo and monitor the process to secure the sample. And I am an informal caregiver because, 1) I am not a trained medical person and 2) I am not at all interested or comfortable with other people's bodily functions. Challenging, to say the least. (But, I remind myself, that is not the point. The point is that those that love and care about mom and dad are here to be part of their aging. Part of their last times together before they must be in a full care facility. And that is more important than anything else today. Being there for each other, all five of us.)

Today also includes mom and me going to the grocery store because Star and dad are off to the pain clinic to see about his hip (I think it is his hip. With the Parkinson's, it could be his back, but I think, hip.). Star has already spent most of the middle of the day taking dad to oxygen treatments designed to help heal his bladder from the effects radiation had on him when he went through his colon cancer treatments.

What else? Oh, Star gets to take the evening off, so I will make dinner and then play cards (if my husband is able to join us) or watch a movies with the folks. I am hoping movie, but cards have their charm, too. I'll have to blog about cards with the aging process. It is a blog unto itself.

I have left out all the little bits, like making the shopping list, a quick trip to get some artisan chocolate that left us running a bit late to get to the doctor's on time. Or the time it took to solve the problem of a dining chair cushion that "didn't feel right." All very real issues in our lives and yet so simple on paper.

Emotionally and spiritually? Well, I guess the simplest way to talk about it is to stop here because I got to get mom and grocery shop. Never enough time to address these all the way to satisfaction. But, as we do everyday, we will deal with them. Actually, that is our best trait, habit, agreement and effort - that Star, her folks, my guy and I all try everyday to meet our needs. Why? Because it would be a disaster if we didn't - and more to the point, we wouldn't be us if we let go of what matters just because it gets hard.

I am mildly ready to quit this musing. But, the clocks ticks.

Daycare and Rainy Days

Today is a rainy day and feelings seem to match. Seem to match because I can feel the growth these feelings nourish, and still the greyness is tiring. A ray of sunshine in the day is the new daycare place we found that focuses exclusively on licensed daycare for the elderly. It isn't connected to an assisted living facility or a larger agendas. Everyday at this place is fully and only about the people who are there that day and the connection to their families and to the staff. I am hopeful. And moved.

"The Sound of Music" is playing in the living room and the von Trapp family is singing just before their escape. The sweetness of the music juxtaposed against the harsh circumstances the family faced are vivid in my real world today. And I am blessed moreover because the movie is a much needed diversion for the folks while Star and I make progress on household decisions and tasks. Like this blog, even.

Tonight we will have Easter dinner as leftovers and the promise of cheesy potatoes, ham and dinner rolls is like a reward for a day filled with grocery shopping, reviewing daycare facilities and laundry. Yummo! Perhaps I'll even paint my toenails a spring-like color.

Days Go Like This (all about Adult Daycare)

The two facilities we have looked at are lovely. One is intimate and cozy, with a staff of caregivers that speak like families do. The other, the one we currently attend, is stiffer - almost formal - somehow, with the staff acting as nurses and teachers. But what makes the difference in choosing the right one for us?

Our concerns about our current place are mainly that Mom gets bored so very easily, as is to be expected, and that the effort to find stimulation for her is minimal. Rote. That all elderly Alzheimer's persons will want the same activities. And that if they don't want to participate in the scheduled one, that television or resting is the other option. I am not particularly comfortable with that viewpoint, however understandable it is given the ratio of caregivers (staff) to elderly. Still, I guess I expect that a list of preferred activities be kept for each one and an effort be made to get them involved in those activities even if a planned activities is being held... within reason, of course. And at our current place, I wonder about the personal touch in terms of personalizing the non scheduled activities.

Then the new option for a daycare place presents other concerns. While we are encouraged by the almost swaddling feel of the facility, which is better for achieving a sense of security and belonging because it is so homelike, it also magnifies the varying degrees of aging that the other attendees and residents have. That could present a bigger problem than the boredom we perceive at our current place. Mom certainly doesn't see herself as being ill or incapable and to be faced with so many people in a small space that cannot function to her level, physically, may trigger anger and depression, too. But the caregivers at this new place seem to be more inclined to personalize the attention Mom would receive. Also, a plus here is that the outdoors is much more appealing for Mom's preferences. Secured walking paths, reachable gardening opportunities, shaded and full sun spots to sit. The activities seem to be centered around activities rather than sedation. And the building security is tight both entering and exiting - more so than our current place (although they are quite diligent and appropriate).

I guess I really know what I think, but cannot get past the risk of change. Mom would prefer, I think, the new place, if she could make choices for herself. The only remaining concern is how to address the proximity issue of so many advanced elderly (to her viewpoint). And is that so big an issue as I am making it? After all, if I am choosing for her the best quality I can, using her viewpoint from pre-Alzheimer's days - to the best of my ability, since it is projection at best and guessing at worst - then the new place is clearly the better option.

Whew - I could go around this barn again. But why? Days go like this. The burden of choosing for another person is not to be done lightly. Add to it that Dad has Parkinson's and is in the very early stages of Parkinson's related dementia (more forgetfulness at this point and slower cognitive skills and, of course, slower ability to share what he thinks because speech is difficult), and the decision are exponentially bigger. And I am not the head of household. I am part of the live-in family. Mom and Dad, Star (their daughter), me (Star's lifelong friend and Mom's informal caregiver) and my husband (a rock for all of us!). Star is the head of household and these burdens, these tasks, these odd blessings even, fall upon her shoulders. And while we function as family and I share in the carrying of these burdens, the weight remains with Star.

Days go like this. Dad says that. He is right. However, we are lucky that we have days together to go like this. Today is a good day. We are planning for good things, dealing with bad things as they come and not expecting them to be bad (knowing bad days will happen, yes. assuming today is one, no.). May more days go like this.

Saturday March 28 2009

Today is shower day - then lunch, then games, then movie, then dinner, then games, then bed. That's it really.