35 year caregiving | Caregiver Action Network

35 year caregiving

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WackyWicky's picture
35 year caregiving

My wife came down with fibromyalgia about 35 years ago, spent the first 6 months in bed, but never fully recovered. She wasn't able to stand for more than 15 minutes at the most and that meant she was no longer able to cook, do housework or do her favorite pastime: gardening. However she was mobile aroung the house, could get things to eat as long as she didn't go beyond her physical limits.

So it wasn't too much for me since I was working, traveling around the country as a pilot car driver. DW could pretty much take care of herself as long as food was available although as to be expected there was a small bit of stress which she managed to contend with. We were able to keep in contact through telephone which helped to releave most of the stress on both of us. But I was constantly concerned whenever I was away (anywhere from a day to a week and once for two weeks).

Then she fell, broke her hip which required a THR (total hip replacement). That was the beging of the end of my business, I had no choice but to retire. We were both on Social Security by then so finances weren't a problem.

Then it happened, she came down with dementia (about 5 years ago). It wasn't too bad at first, mostly loss of short term memory. She went to a neruologist who made the diagnosis who also prescribed a med to slow the progression, not sure if it ever worked i.e. how effective it was, if at all. Still, even now she can feed herslef as long as food is prepared, dress herself, get in and out of bed by herself and do her toilet chores without help. That is not true of bathing she does need help there.

It became obvious I was not going to be able to take care of the house, inside and out, do food prep, do shopping and all the other things needed to maintain our partnership; I was becoming extremely stressed, fortunatley not to the point of depression but close to it.

I finally went to see our local Social Services lady who helpped me to get some help. Our local VNA provided a homemaker twice a week and a healthcare person to help her bathe once a week. That seemed to be sufficient, took a lot of pressure off me. Then to make a long story short she ended up in the hospital twice and then sent to a Health Care facility, and that was not good as she decided both times she wanted to go home (dementia speaking). Since she was not thought be incompetent they had to let her sign herslef out AMA (against medical advise). That screwed up any chance for her to have help come in. It took some doing to get our family physican to sign papers to get more help.

Meanwhile the stress was getting ot me, I was grinding my teeth constantly during the day. Finally someone from the state came to evaluate her again to determine what sort of help she needed. About that time the state reduced funding for some sorts of help and that made it difficult for her Case Manager to find a provider for us. We live in a town that for some reason no one wants to come to, another long story.

We finally got help 4 hours a day 4 days a week but had to live with someone who spoke only Spanish with a little English thrown in. Now we have for 5 days a week someone who speaks almost no English and seems to have no desire to learn. She is good with my wife but only with much sign language. Of course any body is better than no body, but I'm trying with all my might to change that situation.

Meanwhile DW uses her walker religiously but hasn't the strength in her legs to get up and down the three small steps in and out of the house. She needs to go to some doctors but haven't due to that one small problem. Another long story short, we've finally been able to have a ramp built thanks to some very deidicated local volunteers for which I'm eternally grateful to.

I could go on and on since there are still consequenses of the dementia I haven't even addressed yet. Still, I think this may be enough to introduce myself.

Cheers, Robert