Helping Those Who Care for Parkinson's Patients
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| My mom has recently been in the hospital for dehydration and they tried to put her in rehab and do therapy, but she made no progress so they sent her home. There are lots of new problems that have really happened in the last few months. The newest eating issue is loss of interest. I have a private caregiver with my mom 12 hours a day and she can't eat by herself at all. The caregiver (who is really great) feeds my mom and my mom often forgets or isn't paying attention to what is in her mouth. She has to be reminded to chew and swallow. Also she says she's ready for the next bite when there is still food in her mouth. There is a lot of problems with confusion and getting words wrong. Just generally not making sense at all. She also can no longer help with transfers. She's had a huge change in a short period of time. I keep hoping she'll come back. I have a lot of physical, occupational, and speech therapists coming. We can only afford the caregiver for a month or two. After that she needs to be eating on her own or be on hospice in order for her to stay in assisted living. Her nuero thinks she is not ready for hospice. I don't want to move her into a nursing home, although I was told of a good one near us that I might check out. She won't be able to take her cats and she has gotten used to all the people where she lives. But, she might be so out of it that she won't notice. I have been lying to my relatives about her condition. I feel bad about that, but I'm hoping she'll snap out of it. I know this sounds silly, but she has been pretty bad in the past (though not this bad) and she did snap out of it wth medication adjustments and therapy. To add to this, one of her cats is losing weight for no reason and I'm having the caregiver look after him too. So is this what the final stages look like? Is there no big (or small) comeback coming? It's so hard to watch her like this. The one thing she still does well is what I call The Script. I ask how she's doing, she says okay, I tell her to rest, she says she will, and we tell each other we love each other. She still can say all the right responses effortlessly maybe because we have said it so many times. This is the last thing I have to hold onto because everything else is pretty much gone. It's really breaking me up. |
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It's hard to say whether your mother's condition might improve -- my experience so far is that the disease changes a lot all the time and it could very well happen that she could improve. Is there a possibility to change her meds? In the late stages the standard PD meds don't seem to work well any more and just add to hallucinations and confusion, so if she's still taking Sinemet, for example, I would suggest talking with her neurologist about decreasing it. Change in environment sends my dad into a mental tailspin, so I agree with your trying to keep her where she is if possible. About the cat -- the first thing I would suspect in a cat that is losing weight for no obvious reason is hyperthyroidism. It's very common in older cats (10 years or older). It can be treated, so if you can fit in a moment to take the cat to the vet, you might check that out. |
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sooboo, a huge change in a short period would tend to point something else is going on along with Her Parkinson's. The dehydration would make eating less pleasurable. Interfere with swallowing and effect how She is processing Her medicines. You say the neurologist doesn't think She's ready for hospice. The Doctor must suspect something else is causing the problems, ask the Doctor right out, well what do you suspect. You also say " I have a lot of physical, occupational, and speech therapists coming." I know You want to do the best to help and feel these therapists are the way you can fight Parkinson's and have some sense of control in the battle. They just might bring about regaining lost function, however perhaps you don't need lot's of them? A couple may do the trick. If Your Mom is confused, wouldn't having many people in and out, doing this and that be just as confusing as being in a nursing home? Or more so, as they will be "barging" in to Her home upsetting the routine and make her upset at these people seemingly harassing Her? Poking, prodding and telling Her what to do? You mention a limited time to afford this, However intense therapy might cause more problems. Just something to think about where less may be better. Lastly, You feel bad lying about Her condition to relatives. Maybe it's time to not lie, time to tell them the truth? Time to let Them step up if they're ever going to? People surprise Us at times, let them see what is going on. Let's hope they come to aid You and Your Mom. Sooboo you are doing a great job caring for Her, accept help if offered. Don't feel ashamed about anything. You're doing the best You can, please allow others, Family and friends to do the best the can also. Your Mom can't help the way She is, She didn't ask for this disease. You can't control everything with Parkinson's my friend but you can allow others to help. As hard as it seems to do, at times to accept help it's not a sign of weakness or shame or inability. It's a way to let others show their love too. Take care, best of luck and hang in there. |
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| sooboo, I agree, you should be honest with family on your mother's condition. This is too much for your shoulders alone. Hopefully, they will step up and help and support both you and your mother. I am honest with my family about Dad's condition but they just say how good he looks. Well, it takes an hour and a half each morning to get him to the point where they see him. I also ask for help, haven't gotten any so far, but keep asking. Also, so far my Dad has bounced back from his bad spells but I know there is a point he may not. Take it a day at a time, honey! Take care, Mary |