My mom was diagnosed about a year ago with Parkinson's. Her mobility is somewhat impaired in that she loses her balance easily and walks bent over with a shuffle. I tried staying with her, which was a big mistake. Then we hired sitters from 7:00 a.m. to 8:00 p.m. She refused to have anyone in her house after 8:00 p.m., complained about the sitters constantly and would get up in the night and fall. Finally placed her in a very nice assisted living facility and got her on physical therapy which improved her mobility quite a lot. As soon as her physical therapy ends, however, she sits down and refuses to try to do anything to keep herself moving. She refuses to use her walker and as a result has fallen several times resulting in trips to the ER. I can't see her everyday, as the facility is 45 minutes from my home, I do try to go twice a week and I take her to her doctors' appointments. I have had to start using a transfer wheelchair because she has become too weak to walk from the car to the doctor's office. Twice she has fallen out of the wheelchair when trying to get into the car, because she is too weak to stand long enough to move to the car. The facility serves excellent meals, but she refuses to eat more than a few bites and absolutely refuses to go to the dining room to eat, insisting that her meals be brought to her room. When I visit she doesn't want to talk about anything except the fact that she considers herself to be dying. She honestly has no major health problems and she is only 84 years old. The Home Health nurse tells me that he cannot get her to cooperate in any way. She walks from her recliner to the bed, from the bed to the bathroom and from the bathroom to the recliner and will not use the walker. Her feet swell badly and she is supposed to keep them elevated when she is sitting, but she lets them dangle then swears that she's had them up all day and doesn't understand why they swell. She can only get her feet into house slippers, but is constantly fussing about having no shoes that she can wear (despite the fact that she probably has 20 pair in her closet). She has two closets crammed with clothes, and complains constantly that she needs new ones. The doctor cannot find a reason for her feet swelling, but I am afraid that it is because she gets absolutely no exercise and just sits with them hanging all day. I don't know what to do, she just told me this morning that she doesn't think she will be strong enough to make it to her doctor's appointment this week. What do I do?

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No major health problems?!

Your mother was diagnosed with Parkinson's a year ago. What do you consider a major health problem, then?

It isn't that I don't sympathise with how you must feel. The shoes and clothes part especially, and the apathy, and the lying through her teeth about keeping her feet up - all struck painful chords with me, and I think I can imagine the blend of exasperation and desperation.

The last thing I want to do is make you feel worse; but if you stop and think about what your mother has to look forward to... She's 84, she has a serious (honest!) progressive illness which will have shot her balance to h*ll and is making her feel like poo, and even if she does put her mind to it and start working really hard on all the recommendations, what's in it for her?

If only to give yourself emotional respite, try backing off completely for an interval and letting her do exactly as she wants. Anything she likes to watch, listen to, eat, drink is good; though actually it might be worth asking if medication adjustments might help, too, while you're at it, because depression is more likely than not. But other than that, forget improving her health and concentrate on making sure she's having the best time possible in the circumstances. It'll be a lot less frustrating for you, and if you can manage to lift her spirits you might find she starts taking more of an interest in trying again later.

But if not, something for you to ponder. If your mother wants to die and believes she's ready to let it happen, could you bring yourself to accept that? Are you able to talk to her about how she's feeling without contradicting her?
Helpful Answer (18)

Not much. You're doing all that can be expected but sometimes elders are never going to be happy.

At 84 she may have some dementia but it could just be an aging brain. My mom is 86, doesn't officially have dementia but the last year or so her memory, judgement and abilities have really declined. Fortunately, she's still a fairly pleasant person.

You mom may be determined to just let life run its course. I wouldn't fight with her about theraphy meds or anything else.

We can only do as much as elders will allow if they are still "competent".
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Um, having Parkinson's IS considered a MAJOR health problem. Major. It took my dad's life, I don't think diseases GET more MAJOR.

Ok, as far as your mom-she is in a safe place, yet she hates it. She won't do what she'd told, she demands meals be brought to her, almost insuring that they will the be cold and nasty, hence the few bites and no interest in them. She does her PT and immediately returns to her bent over shuffling walk.....

You just described about 80% of the NH patients we're all dealing with. I thought you were describing my mother, but she still lives in my brother's home.

Honestly? She probably IS depressed, but wouldn't admit to it. Mother is. At 88, we just make sure she's safe and sees her drs when needed and pretty much don't expect anything of her. She's slowly sliding into dementia, whish just makes it all worse.

As long as she is safe and clean and fed, that is about all you can "expect" at some point. I see people all the time who are just so exhausted by the fact they are still alive.

No, it's NOT what you'd choose for mom, but it is what it is.

I know this is no consolation, but there are a lot of us out here with the exact same complaint/worry about our parents. And we don't know what else to do for them.
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A suggestion for getting into the car: use a transfer board. Google that or "medical transfer boards." There are different styles and are used for safe transfer from a wheelchair into a vehicle without standing.

The left arm of the wheelchair is removed (you have to have a wheelchair with removable arm rests). The person in the wheelchair leans to the right side so that the left side of hip is raised. The board is slid under her butt. She sits down, scoots over on the board into the car, leans to the left and the board is removed.
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Get her to her appointment by calling a Cabulance. They will transfer her, and pick her up, but it might be expensive! Better than to wreck your back in trying to transfer her yourself though.

I might be time for a Nursing home, and maybe her Dr can help you with the proper diagnosis to qualify her.
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I warned my husband, who had moderate vascular dementia, to sleep in a bed instead of a recliner because of swollen ankles. He wouldn't do it because he had fallen out of the bed (although he needed no assistance in getting up). He also refused help with his meds and said he could remember to take them just fine. So he had a major stroke, and according to his health care directives, we did not put in a gastric feeding tube and he died 3 weeks later. I discovered that he had not been taking his meds, at least not on regular basis. He wasn't all that old (72) and had no problems remembering people and places, although his "executive functioning" and sense of direction had taken a big hit. He said he didn't want to spend the rest of his life in nursing home, and so he did not. In fact, in many situations we can choose when we die, by refusing the artificial means that would keep us alive. I see nothing wrong with that.
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The withdrawing, paranoia and inability to reason can be signs of dementia. Don't rule it out simply because it does not run in your family. Or because Mom knows everyone's name and what day it is.

Or -- my pitfall -- I was lifelong conditioned to my mom being inflexible about stupid sh*t. And making herself special by refusing to honor certain social conventions and routines. Because of the way my Mom operated normally, I did not recognize her dementia until she was about 4-5 years into it. (Boy, moms really know how to play us, don't they?)

At any rate, the first symptom of dementia is often diminished executive function. This stage can last a long time. With the constant tug of the parent being "extra weird" and defensive....and the adult child becoming increasingly exasperated.

At 84, your mother's neural pathways probably aren't what they used to be. No matter what we tell ourselves about some ancestor who churned butter and tended hogs and walked 4 miles to church until she was 103. Those folks are the exception. That's why their stories stand out -- and are repeated like a talisman.
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I obviously didn't mean that Parkinson's is not a major health issue and I understand that my mom is probably frustrated with the situation in which she now finds herself especially since up until about 3 years ago she was driving herself everywhere and living a fairly active lifestyle. My dad passed 2 1/2 years ago after a brief illness, which not only had a high impact on her emotionally but caused her to withdraw from almost everyone. I took early retirement to stay home and try to help her adjust, but it has been a steady downhill spiral. The placement in assisted living seemed to be the answer and for a while she socialized with the other ladies and went to the dining room for meals and to the beauty shop to have her hair done. Now she complains that she hates the stylist and her hair and that the other women only jabber about things she's not interested in. She sits in her apartment with the blinds closed tightly and the lights off. I have tried to take her shopping or out to eat, but she says that she doesn't feel like it. She is being treated for major depressive disorder and anxiety. My primary concern is that she is going to become so weak that she can no longer leave her apartment. She refuses to go anywhere besides to her doctors' appointments and is now saying that she doesn't know if she is strong enough to go to them. I am afraid that if she gets any weaker I will have no choice but to put her in a nursing home where her quality of life will become even more diminished. Should I simply allow her to waste away until that is the only option? She will soon be wheelchair bound or even bed-bound if we continue in this vein. I suppose there is no answer to this dilemma except to just let her be. I told her a couple of months ago that I only want her to be happy; she replied that she hadn't decided yet if she wants to be happy. Can someone simply will themselves to death? She has been telling everyone that she is about to die for the last 25 years.
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...Have learned to accept this and resist trying to fix every complaint.....

Well put Blue Eyes. With elders we have to pick our battles. If I were to get my parents to eat right, do all their meds properly, bathe more often, keep the house cleaner etc., they would have to be forcibly restrained, and drugged into submission.

So we do what we can, don't obsess with every complaint and detail, try and maintain our own lives and keep marching along.
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My Aunt was in her 90's when she asked to be put in hospice. Nothing had changed, she was just tired of living. She stopped eating and died some days later.

Momma began fading, did not eat enough to keep herself going,and we arranged for hospice, she was 86. She had just had enough and was ready to go. Your mother has a terminal illness that will slowly continue to diminish her. Food probably does not taste all that good anymore. I am sorry to be blunt, but you need to open yourself to accepting her opinion and desires. You have really done all you can do.

What does she have to look forward to? You could try playing dominoes and playing her kind of music (Glenn Miller? Tony Bennett? Rosemary Clooney? Ella Fitzgerald? Doris Day? Frank Sinatra?). Think about what she will truly enjoy and make your time together count.
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