Friday, May 30, 2008

Oh, yeah.

In between doing legit work I called my mother's doctor, which precipitated another dozen calls to coordinate a visit to dr's office on Wednesday. Dr. is concerned that she is missing something, I think - she of course had no frame of reference for my mother's condition, she's seeing her "as is," and after I explained that this is a dramatic change from what was, she is on it. So, I made a few more laps around the track, calling the ALF and then the Dr. to coordinate appt. time. It's done.

A co-worker heard my calls. She's silver-haired and her brother is retired and has taken on the job of managing their mother, who is in an ALF. She called me a Good Daughter. I told her I'd rather be doing anything but this. We discussed the issues of getting decent care for the elderly. My mother is getting top-notch maintenance care, it's the doctors who have to be poked and prodded to pay attention and maybe try to improve her quality of life.

I won't go into detail about her physical issues out of respect for her dignity, I'll just say that she is as weak as a newborn kitten and has no appetite and, worst of all, knows it. She's not a doddering little Alzheimer's patient in a wheelchair hugging a stuffed toy. She is totally still IN that failing body, which is exhibiting the symptoms of a major Lupus flare. I did some reading in my ample spare time, and guess what, even her random bouts of confusion are symptoms. I know she's 82, but I also know that she is sliding downhill so fast it's bizarre. Four months ago she was physically fine, on no meds other than routine blood pressure and cholesterol stuff. (She still isn't on anything that could be responsible for this dramatic change.) Two months ago she was taking care of her house, grocery shopping, doing everything a normal retired lady does. She got sick and then got so sick she had to be hospitalized, and the rest is history. This isn't the gradual decline of old age, this is something systemic working on her. Figure out what and try to fix it if it can be fixed, work on her quality of life, don't just watch, and shrug, and say, "Well, she's 82...."

And, while this is going on in real life, a family member weighed-in second hand to opine that perhaps my mother is "giving up" because she is in an ALF. I didn't take offense, I know that this is what people think and at times it may be valid. He thought I should take her home on weekends (even though she needs 24 hour attention) and maybe even let her move in with me "for a visit," (even though I am 35 miles away for 12 hours a day on weekdays). He wasn't actually critical of me when he opined to Cousin C, who explained the situation to him - that my mother is not steady on her feet and can't be left alone, needs a lot of assistance and people around, etc.

Oh, and y'all? Brain aneurysm survivor here. My own doctors would shit about this situation, so I'm not telling them yet. And I put in a grueling two years on the caregiver front with my husband. Even if I had the money to not have to work, and had the health to do it, I don't have anything left to give. What I am doing now is wiping me out.

I have no guilt. There is no way in hell this situation could be managed any other way, and the ALF is truly nice and pleasant and the staff is caring. It looks nothing like a nursing home, other than the many walkers and motorized scooters in view, it could be a high-end business travel suite hotel. My standard is "Would I live there?" and the answer is "Hell, yeah." I really would - it's a very nice, maintenance free, relax and enjoy atmosphere. At this rate I will never be able to afford it, but.... It's 15 minutes away and I can see her twice a week, more if there is something going on. That's a lot better than once a month.

But, yeah. The attitude that putting your parent "in a home," is evil and doing so somehow contributes to their decline is out there.

I am so tired of this kind of drama. I am forgetting how to have fun. Seriously, I worry that I will be unable to rejoin the normal world and take vacations and laugh. The person who shared this opinion with C has traveled internationally more than I ever will. He has vacationed in places I dream about - hell, two weeks ago we discussed going to Africa someday. An African safari has been a dream of mine since childhood. I can't afford it, but he has already been once and would like to go back, and we talked about it - for me it's pie in the sky. But I'm supposed to take on caring for my mother? I think one of the biggest problems we have in communication with others is a lack of empathy and perspective.

I have no ill will - I have no problem with telling this guy, "Dude, you don't have a fucking clue, let me give you details..." and if I did, he'd reverse course and apologize all over the place and genuinely "get it." It's the opinions offered from a distance that make me crazy.

My 5th grade teacher used to always recite the adage, "Before you judge, walk a moon in that person's moccasins." Corny, yeah, but still valid.


EA said...

I know it sounds strange, but have they checked for a UTI? In elderly folks the first symptom can be dizziness and confusion. A course of antibiotics would fix it.

Catherine said...

She's on antibiotics for a sinus infection right now. One of the nurses also suggested it might be a UTI - that will be something to look for on Wed. But it wouldn't cause her other issues.

Anonymous said...

I'm sorry about your mother. Something very similar happened with my father, he got sick at his 89th birthday party and then just never got well. It has been almost 2 years since he died and I can now say it was amazing to watch but at the time I was so frustrated with doctors, etc. I hope you can figure out the problem(s) and that her quality of life improves. Wishing you the best.

Bess said...

If ever it were a time to disregard what other people think about you, it is now. Well meaning, clumsy footed, off the cuff, thoughtless - none of it matters. Do what you can then give up the extranious burden of OPOs.

ikate said...

Here's my unsolicited "assvice" - have her screened for Leukemia. It's what took my grandfather about 5 years ago and he went very fast. 6 months from fine and living in his own home with my grandmother to dizzy and falling all the time, moving to ALF then to full-blown nursing home. They kept futzing around with his diabetes and BP meds and saying he had dementia due to his confusion. They even amputated his toes from the diabetes and when he was getting pre-surgery blood work done they discovered it. We lost him 2 weeks later.

Very similar story with my grandmother but she lived a few years longer, but when she declined she also went very, very fast and they thought it was pneumonia. They diagnosed the Leukemia after her death.

Catherine said...

They've been drawing blood out of her regularly and each time, everything is normal. This new dr. just ran blood work last week. Nothing jumped out.

dragon knitter said...

i'm not going to give "assvice." i do have commiseration, though. my mom is 2 years younger than yours, and i had to have her admitted to the hospital last week. she was dizzy. they originallyt hought it was a TIA, at which point, i started thinking about "what do we do with her when they release her?" i was ready to start investigating ALFs myself. i love my mother very much. however, with 2 teenage boys in a very small house, i have no place to put her. also, she would drive me MAD.

she's not like your mom, but she's stubborn, and independent, and very strong-willed. we all know how well more than one strong-willed woman in a household works. it doesn't.

i don't condemn you at all. I applaud you for doing your best for your mother (and yourself!)

Amy in StL said...

Wow, I just pray I'm not headed down that road any time soon. My parents are about your mom's age and - for now - they're both healthy. Stay strong and don't forget to have sanity breaks! (Whether that involves wine or yoga or whatever!)