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Life is Changing (I Think) - Lessons on Alzheimer's and Respect

Thursday, July 25, 2013

My parents have pretty much been in denial about their situation. As long as I keep coming and doing everything for them, they think everything is just fine, better than it really is. But their housecleaning lady quit and my daughter quit, so I am left to do everything for them myself. This includes: meds, cleaning, financial such as bill paying. I spent Monday getting the carpet cleaned in their apartment and Tuesday taking Dad to a dentist 50 miles from my home and shopping afterwards. He needed a specialist so it was a long day.

Finally, I had to tell them mid-July that we have six weeks to get something else set up, because I have a special ed high schooler attending school at home. The school year is fast approaching, and I have to make my son my priority at this time.

Since then, I've been interviewing housekeeping help and decided it might be easier to just do it myself rather than be a case manager to keep an eye on the person who comes in their home. Some of the people who interviewed for the job....

At this point they are finally allowing home health to come. They realize it is the best bet for good care as vulnerable seniors. They have dementia and Alzheimer's but they're not fully out of the loop. They just need to face reality. A local nursing home has extended their operation to home health, so an RN is coming next week to evaluate the situation. Now I can get a breather and not worry about what's happening to them.

Then maybe it will extend to getting my mom bathed more often. She's too weak to do it herself, but said, "I don't want any nurses in here," when I brought up the subject of a nursing aide coming in. They don't mind the idea of housekeeping, but anything more personal or nursing-related makes them feel more advanced in their illness, rather than just a consumer hiring a service.

It's an emotional thing to be diagnosed with Alzheimer's. They definitely are NOT totally out of it until some time after the disease has started, middle stage, probably later middle stage. My parents are not there yet. It is a delicate thing to deal with them in a kindly way, but still get their needs truly met. People with Alzheimer's know they are losing their abilities - they realize their mistakes and problems - and it's scary for them, and sad, so I try to be careful about how I word things and go about handling their situations.

I have spent the last year trying to traverse this path. Along the way, I have had to give up myself until I could get them to cooperate with their care.

It has been tough. This month, I made homemade turkey soup with a turkey my daughter baked. It had organic potatoes, carrots, and celery in it. I returned and it was not touched. I returned the next time, and I said, "You aren't eating the soup I brought!" My mom replied, "Yes, we had soup." Then I spied a 4-pack of chicken noodle soup on the counter in shrink wrap plastic, with a can torn out of it. I said, "Mom, you didn't eat the soup I brought." When that sank in, I told them, "You have to remember just one thing: look in the refrigerator. Remember only that. Just look in the frig and you'll have something to eat."

Then a few nights later, I brought a casserole for them and it was not eaten either. I offered to heat it up for them. Dad returned from the store with chips, dips, and ice cream, among other things, and that's what he ate for supper. He didn't want a casserole. I ended up putting it down the garbage disposal several days later amid his protests. He claimed to like it then; too bad he didn't when it was still edible. I decided that if they want to eat like college students, let them. I can't do anything more about that. I'll make meals from time to time but not make it a big deal.

One of my friends went through the same thing with her mother who nearly died from an aneurysm. A decade later, she's taking food to her mom and complaining that she doesn't eat it, but drives to a local diner known for its pies, and has a piece of pie instead. Her mom just spent a stint in a nursing home for a broken hip.

It's their choice, their lifestyle. We can't live their lives for them, and I want to preserve their personal freedoms as much as possible. That may mean more for them in the long run than rigid dietary guidelines. I just wish they'd listen to me. It's too bad they make poor choices. They stopped at a fast food restaurant after visiting the cardiologist - twice. They buy half-and-half by the quart for coffee and cereal. Junk food, you name it, they said they're old and have earned the right to eat how they want, and they're going to die anyway. Seems I remember they were eating like this for the last 30 years. Americans unwittingly playing the game started by big food corporations. Not thinking about what they're doing, just doing. At least they have Meals on Wheels for lunch.

Well, it's come to the point where they are finally getting help outside the family. I hope it turns out well. After all, the nurses haven't even met them yet. Once they start the homemaking, I think the hygiene care will follow. When I tell my mom to get in the shower, she says, "I'll feel better next week." I try to be tactful, but it usually falls on deaf ears. Last week, she was agreeable. That was a pleasant surprise not to push and pull for a change. She felt better afterwards.

Despite all this, they really are sweet people. I know this makes them sound awful, but they're really not. They're actually quite a lot of fun. It's just the business of life that they don't like. This is starting to sound like the role reversal from parent to child, child to parent.

Perhaps I will begin seeing more than a Remains of the Day to do things for myself, like my beloved bike riding and swimming and walking the dog, once some help starts rolling in. If it looks like things are really moving along and changing for the better permanently, I will change my Spark Page intro to reflect that.

Sorry this is long. If you read it, I give you a lot of credit! emoticon emoticon

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Member Comments About This Blog Post
    I went through something similar with my mother but eventually we were told she hadn't got Alzheimers, it was Lewis Bodies Syndrome, a mild form of dementia which results in halucinations.
    She would often ring me to say people or animals were in the house, the children were being noisy or that the police needed to interview her...this usually after watching a detective show on
    She lived twentyfive miles away and I can't drive so my poor DH put up with a lot bless him!

    When she was assessed we were told she couldn't live at home any more as she wasn't fit to look after herself so then came the sad process of finding her a care home...some of them were truly awful, definitely somewhere I wouldn't have wanted to end up!
    The one we eventually chose was wonderful and she was very happy there.
    It was heartbreaking having to find her a home but I think she was happier there than when she was living Dad died five years before...she had company, visitors, trips out and companionship.
    On her more lucid days we'd have a good laugh together about the things she'd done or said.
    I miss her terribly.

    My advice is to take whatever help you're offered, it gets harder as the illness progresses and every little bit of help will be appreciated, from you if not from them!
    Take care emoticon
    1713 days ago

    Comment edited on: 8/12/2013 5:21:50 AM
  • KAREN91
    I could really relate to this blog. My mother lives a half mile from me. She has dementia. I fill her med box, buy her groceries, do her laundry, take her to her drs, make her appts etc. There are times when I've been tired and thought about getting her into assisted living. Its more work and responsibility then most people realize. Between my job, children, back pain etc, I don't know what I'd do without my husbands help. emoticon emoticon emoticon
    1726 days ago
  • JACKIE542
    I am very happy that you are getting some help with this. You do need to take care of yourself too. Hope you can get some walks and bike rides in soon, take good care. emoticon
    1731 days ago
    You are doing great.
    1731 days ago
    It's difficult when you see this happen to loved ones. You feel so powerless. The roles do reverse, with you becoming the parent and them the children, but it's so much harder since they ARE adults and you can't make them cooperate or do what is best for them.
    It sounds as if you are getting the proper help for them, so you don't wear yourself out completely (too easy to do).
    Take care of yourself. Sending wishes that all goes well and you are able to put together a team of caregivers to help at this difficult time.
    emoticon emoticon emoticon
    1731 days ago
    1731 days ago
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