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By Tessa On 2009.10.27 22:25
I am new here, this being my first post, please forgive me if I'm in the wrong area I promise to get to know the site soon but I just found you today. My sister and I are both young working mothers and are doing the best we can to give care to my father with PD. Dad was YO at 47 and is now 63, he is not very well at this point and I'm just looking for some advice, or words or wisdom, or maybe just someone else who can relate. My father is alone, no longer married and flat out refuses to move into an assisted living community or with my sister or myself. Actually Dad did live with my sister for a few months but made some very inappropriate comments to her and for fear of their young daughter he moved back to his house. We are finally facing facts and know that he is not going to be able to live alone much longer. We do everything we can to care for him, but he won't move to either of the towns we live in (we are both 30+ minutes from him) but it's become too much of a chore and honestly it's just no longer realistic, he needs more care and supervision than we can provide. Can anyone tell me, how do you approach this subject? My father will REFUSE! He has brothers and sisters that live in his town but they will be no help to use, they think we are only trying to strip Dad of his freedom and tell us regularly what bad daughters we are. They just do not understand and will not do anything to educate themselves about PD. So how do we even start the process? We are POA's for Dad, both financial and HIPPA. I'm sure is Neuro would work with us to deem this care medically necessary but after that I don't know what we would do? Does anyone have any tips or advice? Thanks for listening to me ramble. I'm looking forward to "meeting" everyone and becoming more educated myself.

By annwood On 2009.10.27 23:15
Welcome. Teresa. Yes, you are in the right area and we are happy to have you here. My first thought is that you and your sister should discuss this with the neurologist. Ask his opinion regarding whether or not your father should be living alone. You have POA and it may eventually be necessary for you to evoke that if your father is no longer able to care for himself. I doubt that he will ever agree to what may need to be done. It is part of the disease. You may have to set a plan and do what has to be done without everyone agreeing. Don't worry about the aunts and uncles - if they are unwilling to help they are just in the way and they have no legal grounds to interfere. You and your sister are the ones doing the caregiving and it is not uncommon for others to try to tell you how to do it. If the neurologist tells you that it is ok for your father to live alone and that he is competent to make decisions for himself then you may need to back off on the degree of caregiving.

It is really difficult to fully assess your situation without more information so stay with us and we will try to help you work things out.

By Emma On 2009.10.28 05:49
Hi Tessa, welcome to the forum! My husband has PD and he's 66 years old. So far he is able to be at home so my only experience in dealing with placing someone in a living facility has been with my mother (who was mentally ill and had Alzheimers). Like your dad, she refused to go but it was necessary and we did it anyway. During the admission process the intake person was asking her questions and my mom would smile and answer sweetly and politely then whip her head around like something out of the Exorcist and look at us hissing "I know two kids who are going to rot in hell". The point is, you will learn through this process to get a thick skin. It's hard, but you have to. Talk to the doctor, maybe your dad can struggle along on his own for a while yet, it's hard to know without knowing all the specifics. I second what annwood said (by the way, she is a very wise and educated teacher and friend here), don't worry about your aunts and uncles, again the thick skin. They don't and can't know what you and your dad are going through and unless they want to step up to the plate and relieve you of the caregiving job they have no vote and no voice. My husband has two brothers, one backs off and is supportive. The other thinks my husband isn't that bad, but at the same time constantly bugs me to send him all over the country (and the world) for what I consider voodoo treatments. My response to him is "how much is that going to cost you?" It shuts him up most of the time since he obviously doesn't want to take any responsibility financial or otherwise. You can't let yourself be bothered or influenced by people who don't help and don't know what they're talking about.

Again welcome. This forum will be helpful to you, I'm glad you found us.

By susger8 On 2009.10.28 07:59
Tessa, there are other options to consider -- such as getting a home health aide. This costs about the same as assisted living, maybe less depending on where you live, but the person with PD can stay at home, which is often very important to them. Plus, an aide can give one-to-one care, which you would never get at assisted living or even a nursing home. Sometimes you can start with someone coming in to help out during the day, and later go to live-in. (A live-in aide is usually cheaper than getting someone in during the day.)

I have become less than enthusiastic about assisted living. For most people with PD, it's at best a very short-term solution.


By Tessa On 2009.10.28 11:44
Thank you all so much for your support and advice. I think it's great to be able to know we are not alone and be able to connect with other people dealing with similar situations. My skin has definately gotten a lot thicker in the past few years, we know that the changes we make are for Dad's best interest but it's never easy to hear that someone thinks you are "being a bad daughter" when you know you are only doing what is necessary.

Dad is on Medicare but we have been told they will only pay a certain dollar amount for HH aides and it's never anywhere near the amount that would be needed. Is there some sort of financial assistance or Medicare appeal we can file? We did hire a someone to come to his house a few times a week to clean and make meals, but Dad thought it was a waste of money and told her not to come back after the 5 or 6th visit. She asked us if we wanted her to continue but his attitude was so negative towards her we felt bad "making" her go there.

By annwood On 2009.10.28 12:40
To the best of my knowledge there is no assistance for home health from Medicare and no appeal process for it. I would try calling the Counsil on Aging to see what may be available.

The first thing I would do is meet with your father's physician and get some idea of where he is cognitively and physically. You have POA so you can do this without your father. Based upon this information you can make plans. Can he live alone? How much help does he need? Should he be driving (probably not). A red flag went up when I read about the inappropriate remarks that forced him out of your sister's home. Does the physician know about this? Perhaps some of his meds are causing this and need to be adjusted. It is a common problem with PD. Do either you or your sister accompany him to physician appointments? This definitely needs to happen. He probably won't like it but too bad. More tough love. Tell him that you are unable to help him if you don't know what is going on.

As an outsider with very little information I sense some manipulation going on on the part of your father. If he refuses outside help does that mean that you and/or your sister fill that void. Does that mean he gets to see you more often?

It may be time for you and your sister to step up to the plate and take over control with the POA. This does require the physician to say it is time. Do not attempt to get your father to agree to all of this - that will never happen. You have to make certain that he is properly care for and safe. He may not be the best person to make these decisions. Please keep in mind that much of this is the disease process and not your father.

By Tessa On 2009.10.28 14:01
I think we do need to make some more calls, the Neuro told us he could perscribe Home Health but from what his insurance told us they would not pay very much. Unfortunitly Dad doesn't have the funds to cover the out of pocket cost and neither do I or my sister. We do accompany Dad to all his appointments and have met with the Neuro, but without the finances we have felt that our hands are tied, we can't employ someone to help without funds to pay them.
I do not think my sister told the Neuro about the inappropriate comments, until last night when I was reading here neither of us had heard of this happening in other PD patients. I will bring this to her attention today and possibly put in a call to the Neuro.

The manipulation is totally a valid point, I am sure this is happening. I am also sure Dad is living in complete denial that anything has changed with his mind or body. He cannot or will not accept that he needs any help. His drivers license was revoked by his doctor but he still drives. We tried keeping his truck at one of our houses, but since he lives alone and will not accept help from an outside caregiver it was returned to him. My sister and I both know this is horriable, but we are at our wits end and don't know how to make the situation any better. The fit he threw when his truck was gone was worse than we were able to handle. We both have to work our full time jobs and he went so far as to call the police to tell them he had been abondoned.

Thank you again for your support, it's just nice to be able to communicate these thoughts and problems with someone who isn't going to just shake their head and say "What are you going to do?".

By Pearly4 On 2009.10.28 17:50
Somewhere in amongst recent posts Annwood remarked that she remembered leaving her kids with a babysitter and they weren't happy either -- but they probably stopped crying and complaining the minute she walked out the door! It struck home with me because my mother did nothing but complain when she realized the aids were coming and we were leaving but somehow always managed to tell everyone but us that she was enjoying her time wtih them "cooking", and "shopping" and her time out as well as in the house with them. I feel far less guilt now that I'm able to equate her behavior with that of a child. And the aids were well used to stubborn older people who insisted they didn't need or want the help -- they dealt with it as well.

It's hard to deal with a parent who is now a child and who now needs your "parenting" but doesn't understand and only remembers that he or she is the parent! I somehow managed to turn myself off and become more caregiver than daughter for the last two years -- didn't always last or make everything miraculously better, but it helped. She too called the police and reported my husband and I for "holding her against her will" and "refusing her the medications she needed" -- nothing came of it, and I'm sure it's not the first or the last time they were called by others!

My employer helped by forming a Caregiver's Support Group at work - we lunched once a month or biweekly, had speakers periodically and mostly just vented with each other. It was an enormous help, knowing others that close were in the same boat and dealing wtih the same problems. Sometimes we came up with solutions to problems easier because we were in close proximity and knew resources within our own communities. Would that be a possibility for you or your sister?

It's a hard task being a caregiver -- it's hard to believe you won't regret it. You won't love it, and you won't ever believe you did it as well as you could or should have, but in the end you did what others wouldn't or couldn't and you did the best you could. Good luck!

By lynn On 2009.10.28 21:29
A resource that I have found to be invaluable is a consulting geriatric nurse who specializes in identifying resources in your community including adult day programs, in home care and matching people to care facilities. I plan to use her thru out the PD process until the end. She's use to quality of life decisions and most important, she's not related to me. She's objective. She knows the issues you're facing and she can calm me down like no one else.

By LOHENGR1N On 2009.10.29 00:07
This might sound a bit off but try calling agency's like United Cerebral Palsy and such and Independent Living centers. They just may be able to point You to programs that help aide Disabled People to live home with PCA's (personal care assistants) check phone books, ask Doctors offices for info on social workers also who may be of aid in finding the programs. Take care, best of luck and hang in there.

By susger8 On 2009.10.29 08:03
I expect you have looked into whether your father qualifies for Medicaid? The requirements vary from state to state, but unfortunately are pretty stringent in requiring low income and few assets. Medicare will pay for short-term care (for instance, a limited stay at a rehabilitation center after a fall that causes injuries) but not long-term care.

You have to face the fact that at some time in the future, your father will require more assistance than you and your sister can give him. He probably expects one of you to give up your job and look after him full time. He may not want to accept a different solution -- but he may have to.

By Tessa On 2009.10.29 09:08
Thank you all for your advice. I'm trying to complie a list of questions to ask when I start calling different agencies. Dad is getting very near that point where is requires more help than we are able to give him. I hate that we can't make it work without Hospice or Home Health, but at this point in our lives there is just no way.

By WitsEnd On 2009.10.30 09:11
Unfortunately, there's no easy way to do this. It was like taking away dad's car keys. He got mad--but what else can you do when he is sundowning and having delusions? You wouldn't let someone like this drive anymore than you would let a two year old drive. He got mad, but in the end, he got over it.

Home health care, Meals on Wheels and hospice can all help up until the point where he requires constant supervision. At that point a personal care home or nursing home will be required unless you can arrange 24 hour sitters--which is difficult and unless they are volunteers--expensive.

From a money perspective, the VA can be helpful (check with the county office not the US government office). It can take several months to get set up, but even veterans who aren't entitled to assistance may be entitled to aid. That was a big help for us with dad.

Even if your dad doesn't require 24 hour care now--start checking into those options. You can be surprised how quickly things can change and it takes time to locate a good home or sitting service. My mom always said to plan for the worst but hope for the best. Medicare only covers a certain numbers of days of long term care or rehabilitative care and it isn't very long.

Home health care and hospice should be paid for by Medicare if the doctors prescribes it. Meals on wheels brings in lunch and checks on the seniors and they usually charge a something minimal (a dollar or so) or nothing at all. Hospice is fully covered by Medicare and they assist with bathing and meds--but neither home health care or hospice provide 24 hour care and there's limits on what they do.

Making a list of what to ask is an excellent idea. Good luck and hang in there.

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