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.