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Topic Caregiver Mom thinks she's out of options - is this true? Go to previous topic Go to next topic Go to higher level

By yellowrose On 2015.03.10 19:29
Hello everyone,

My mother, who is retired, is sole caregiver to her husband, who has late stage Parkinson's. He is still able to walk, which I understand is very unusual with someone for his stage of the disease, so he can still take public transportation to his job. His health has declined tremendously over the past year, though. He just got back from the second trip to the ER in a month.

Mom is dispirited, discouraged and very down right now. Today she finally spoke with a local community social worker about getting an aide to spot her for a few hours a week, but was advised that the people most likely to be interested would not be trustworthy *and* that a future nursing home or assisted living facility might count that against her financially, trying to soak her for more money since she was able to afford the in-home care.

Have you found this to be true? Considering how quickly my stepfather's health is declining, I would not be surprised if he has to enter a facility before long. But I don't think my Mom can go on like this. I'm afraid that even though she desperately needs some support she is going to shoulder the burden because she feels she has no other options.

Although he has not been very good to her, my Mom can't bear the thought of being the reason that her husband loses his way of life (i.e. by telling him it's time for him to go to a facility). I understand this and don't want him to have to go either, but there has to be a way for her to get some help. Any advice from those who've been on this road?

Thank you so much.

By LOHENGR1N On 2015.03.10 20:40
yellowrose, Welcome to the forum, I would question the late stage label? Walking and working doesn't sound very "late stage" yet to me. You don't mention if or what drugs he's on but adjusting these medications can at times make it seem like a miracle has happened. Your Mom can try counsel of aging in their area or you could try looking up online to see if your state has a data base of home aides. Others here will be able to give you better directions to that route than I can, I'm Al by the way and I'm a person with Parkinson's an old hand here on the forum I was diagnosed in 1986 at the ripe old age of 33 so toss the time frames and stages out the window as while they may be a kind of guide line of the disease they certainly are not ste in stone and I found they can be more limited and confining than helpful most of the time. Hope this helps a bit and I'm sure others here will get to posting to help with your questions. Take care, best of luck and hang in there

By Mary556 On 2015.03.10 21:27
Greetings, yellowrose. I think your mother should get a second opinion. That social worker's advice does not sound right to me.
We have a home health aide who visits one hour/week to give my Mom her bath. Cindy is excellent and has taught us many strategies for better caregiving. Her heart is in her work and we trust her fully.
Someone did advise us that if you ever want to hire an unknown person to stay in your home overnight when everyone else is sleeping, you want to be careful to screen them carefully, get references.
As far as a nursing home charging some patients more than others, that sounds unethical. There should be one set fee. I would be very surprised if there are not gov't regulations and penalties for any facility that would abuse patients that way.
I hope your Mom will be able to get the extra help that she needs.

By carman96 On 2015.03.10 23:47
I also question late stage. I doubt at that stage they could walk much, use public transportation or have a job.
The social worker is full of it. There are many caring and trusted people to help. I don't know where you live, but call your agency on Aging for advice.
Your mother should consult an eldercare attorney about the nursing care facility question. There is a way to protect your mother's assets should her husband need to go into a facility. Good luck

By yellowrose On 2015.03.11 00:06
Thanks so much for your replies, Al, Mary and Carman. Much appreciated!

About the "late stage" terminology, good point. I'm just conveying what has been told to me, so I'm probably not being very specific or perhaps even fully accurate in my retelling. I can say that although he is walking and making it to work, that situation is unfortunately tenuous at best and they have already begun to cut his hours (we suspect due to issues of incontinence at the office but of course they likely wouldn't admit it). My focus for the moment, however, is on Mom's situation as the caregiver. I actually think it would be great if she would join a caregivers' support group or post on a forum like this one because it seems she (and by extension, her husband) could benefit from connecting with the larger Parkinson's community, but she hasn't felt comfortable doing that yet for reasons I don't fully understand. Thanks also for sharing those resources. I'll note those when talking with her. By the way, I like the Lohengrin handle. Mom's a big Wagner fan and I grew up listening to his operas with her.

Mary, it's very good to know that you've found an aide who can both care for your Mom and advise on smart strategies for caregiving. That's one reason I think it would be good for my caregiver Mom to have help--a professional might have some very smart advice to share that could lessen the burden for both Mom and her husband. Good to know about screening for references. A thorough check would no doubt be crucial. I also think Mom should get a second opinion. This advice she gave didn't seem accurate to me. The social worker had advised that Mom retain an elder care lawyer, so it seems to me that the issue of getting financially penalized for the in-home care (if that is even something that happens) is something the lawyer could advise on.

By LC On 2015.03.11 13:31
Yellowrose, your Mom situation sounds a lot like what I went through a couple of years ago. I am so thankful that I have two great adult daughters who helped. One daughter researched support groups in the area and came with me to my first meeting. I have been going ever since. It's good to connect with others who understand what you are going through and can offer suggestions to make things better. I agree that it is very important for your Mom to get her finances in order to protect her assets later on. I found that one of the most important documents she needs is power of attorney. It makes everything much easier. It allows her to act on your father's behalf in all matters from health care to financial matters. It is best to get this early on in the disease when your Dad is able to sign for himself to avoid having to go through the court system. I wish your mom all the best. Please continue to help her. I know I would not have done the many things I needed to without the support of my girls. God bless.

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