Daily Kos: KosAbility: Caregiving while Disabled (Part II)

Now, in retrospect, I understand that none of us had realistic expectations for Mother, not she herself, not the doctors and other professionals involved in her care, and certainly not I.

The physicians, each highly qualified specialists in their respective fields, were put in the impossible position of planning a course of treatment and prognosticating based on insufficient data. ?While longevity rates have expanded radically over the years, few major rehabilitation patients are in their nineties. ?So, while it may very well be true that most patients with a fracture similar to my mother's regain functioning, on average, in three to six months, there haven't been enough cases of 90-year-olds recovering from such fractures to factor in her slower rate of healing, and the effects of her accelerating aging processes.

This was further complicated by the fact that professionals these days, appropriately so, are taught to involve the patient in the decision-making process. ?So, when Mother said that her goal was independence, they took that seriously. ?The fact of the matter is that Mother was far from independent before she fell. ?Although she still thinks of herself as a seamstress and had a fabulous sewing room, she hadn't sewn a stitch for upwards of a decade. ?She hadn't been cooking for at least as long, going to the senior center or to a restaurant with friends for the mid-day meal most days, and "grazing" on snacks of dry cereal, cottage cheese and fruit, or other items requiring no cooking the rest of the time. ?I was driving her everywhere she went, conducting her business affairs and her shopping. ?I was putting up her meds once a week, and reminding her to take them. ?She had a housekeeper.

So, what she really meant when she said she wanted to be independent was that she wanted to stay at home. ?It didn't mean she really wanted, or was even able to do the things necessary to accomplish that.

Hiring full-time caregivers was simply not an option. ?It was unaffordable, and frankly, the quality of care is spotty to say the least. ?(I have horror stories, but that would take a whole diary in and of itself, and includes everything from serious bruising from improper transfer techniques to nearly setting the house on fire during a cigarette break.)

Doing it all myself was likewise not an option. ?It was breaking my health, and put my professional life seriously at risk. ?(There's a limit to how long one can extend a leave of absence and have any assurance of being welcomed back.) ?By the time not one but two Easters had come and gone during this last bout of full-time caregiving, and nearly two more full years of my having left my home for a short stay away, we had cut back on the outside caregivers' hours to two hours in the morning and again at bedtime. ?I was doing round-the-clock care the rest of the time. ?I was exhausted.

So, in May, our morning caregiver needed to take a vacation, and the other was going into a CNA training program. ?Mother checked into a local assisted living facility for a two-week "respite" stay. ?While there, a permanent apartment came available at the place, and she decided to take it. ?I hated like heck that we were abandoning the goal of keeping her at home until it was time for her to, as she put it, "be taken out in a box." ?But, I was very relieved that she made the decision on her own, and that I could start making plans for my own future again.

Here are some mistakes I made along the way. ?I think I've learned from them. ?I'm not relating them to browbeat myself. ?I did the best I could. ?But by relating them here, I'm reinforcing them as a learning tool for myself, and perhaps some of you reading this may see some benefit in knowing about the pitfalls I failed to recognize.

1. ?I didn't pay attention soon enough.

Mother appeared to be functioning at a much higher level than was actually the case, and for a very long time. ?Her house had a fairly tidy appearance. ?There were no overt indications that her business affairs were other than in order. ?It wasn't until I had to temporarily take over her affairs while she was in the hospital that I saw that bills were being overlooked, or overpaid. ?A lot of decisions were being made by default to her financial detriment. ?In almost every aspect of her life, just under the glossy surface was chaos. ?I should have started asking some questions, and requesting to be involved sooner. ?It would have made stepping in when I did much smoother.

2. ?I let her buffalo the professionals.

When she minimized her difficulties, or exaggerated her activities, I should have let her professionals know they were getting inaccurate information. ?Perhaps it would have led to more realistic goals being set. ?I didn't want to embarrass her, or initiate conflict. ?Despite the difficulties in diagnosing and prognosticating in the case of a 90+ year-old with multiple health issues and a severe traumatic injury, it certainly helps to be getting accurate information from the patient and family.

3. ?I needed to care more about myself than I did about protecting her assets.

Specifically, I needed to hire more help. ?We cut it to the bone because she had run through most of her savings, and we were looking at having to liquidate assets she didn't want to lose. ?My health and well-being were more important than those things. ?I won't play the what-if game, nor beat myself up. ?I am, however, going to factor such considerations higher on my priority list in future.

So, where do I go from here?

Professionally, I'll know more soon. ?I'm in consultation with my superiors, and we are getting closer to having a plan in place which will put me back into my field on a part-time basis before years' end.

Health-wise, I'm already doing better. ?Mother had only been in assisted living for a month when I had the first normal EKG I'd had in over a year, and that's with no other regimen changes. ?Just getting a full night's sleep most nights makes an incredible difference in one's health and well-being.

Socially and Avocationally, I'm slowly reintegrating. ?After so long a period of having to say "no," when invited out or asked to participate in things, people quit calling. ?I'm getting back in touch, but not too fast. ?I don't want to trade one circumstance of being over-committed for another. ?My renewed participation in KosAbility is part of that process.

So, there it is, as close to "in a nutshell" as my propensity for verbosity would allow. ?I tried to leave room for discussion.

Finally, I need to correct the record. ?I mentioned in the first installment of this diary last week that I had returned to my hometown about six years ago. ?Afterward, I realized I was wrong. ?In fact, it was a presidential election year then, too. ?So it was eight years ago. ?Wow. ?Where did they go?

Source: http://www.dailykos.com/story/2012/08/01/1115788/-KosAbility-Caregiving-while-Disabled-Part-II

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