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Lori Dalrymple Dalpe

Daughter needs help - Father with Parkinsons

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My parents own there own home, living there for over 50 years. I am the oldest of four siblings, who have recently taken on the responsibility of caretaking for both of my parents (dad has parkinsons and mom is disabled). They are not to the point where they are totally incapacitated, needing nursing home care, however, they do need support (cleaning house, shopping, washing hair, making meals, etc.) My other siblings are in denial about our father and I often find myself trying to mediate between the needs of my mother and the needs of my father. It seems that my father is back in his childhood and wants to buy everything, travel and have fun. Mom is more seditary and pratical. She cannot do alot and ofen relies on my sister and I for help.

 

In the past my father has taken care of her physically. Now that he is sick she is trying to take care him (not physically), but mentally. Oftentime my father would get upset if my mother reminds him, or tries to help him. He often blames her for things he cannot remember. His memory is sporatic and we now accepted the fact that he repeats himself at gatherings and speaks without considering the impact it has on others. Dad no longer has the ability to sort out his emotions. He runs hot and cold.

 

It is draining on my mom and me to try to keep track of where he is going and what he is doing. He does not trust my mother and therefore does not tell her where he is off to; sometimes being gone for more than eight hours. He is now to the point where he forgets most things - which is upsetting to my mother; as she does not know how to deal with her own illness and his frailing memory. Mom is refusing to put herself and dad in assisted living. I feel that the best thing for them is to get an apartment where they can get the help that they need, yet also have a sense of independence. 

 

How can I help and convince my parents 1) without having them lose the sense of independence that they always had but create a better environment for my dad and mom, where they can get the help they need on a continual basis and 2) how can I convince my siblings that our parents need help.

Edited by LoriD

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LoriD wish I had the answers for you. I have PD and am the sole caretaker for my 90 year old aunt. She is probably in better health then I am but she is legally blind. Getting her to and from appointments is my responsibility. I do most, about 97% of the cooking. The 3% she does makes such a mess and hard for me to clean up. She still does her own laundry but I have to sort her colors and different water temps for her since she can't read the labels. It is hard. You may want to check out and see what support groups there are available in your area.

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LoriD,

 

The only way your parents will be happy is to let them stay put.  Imagine if you lived in your house for 50 years and then is forced to go to a strange place against your wishes.  Do you have the resources to hire a full time or part time caregiver?   Have someone come and keep them company and do things for them.   The only way people will go to assisted living or nursing homes  is when they are the ones that want to go or they have no family or friends that can help them. 

 

As for getting your siblings to help out?  I wish I had that answer.  I go to work full-time and hire a caretaker to watch my mom during work hours and then it's all me.   We are brought up to be independent and ambitious and want more out of life or at least live the life our elders never had.   Time passes and they get older and depend on us and we drop everything to care for them or ship them off to strangers and worry if they are well treated.     It's never easy.  Do what you can live with and be at peace with your decision. 

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Oh this is hard.  It sounds like your parents need more support.  One possible avenue to explore is going to a doctor with them, and having a frank discussion with them and the doctor about their what type of help might be necessary in the house.  You can then try to have a neutral meeting with your siblings and ask for their help in problem solving the issue.  This at least would get everyone on the same page, and perhaps open some lines of communication with your siblings.  I'm afraid I've gone down this road once or twice, and it often doesn't work the way you might like.

 

Good luck, I know it's hard.

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One sibling will always do more than the rest and resentment will always cause friction in the family.    I know this first hand.   Do all the work and lose my freedom. Don't do the work and my poor mom suffers.  

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He does not trust my mother and therefore does not tell her where he is off to; sometimes being gone for more than eight hours. He is now to the point where he forgets most things - Could his distrust be a medication side effect? Is he on dopamine agonists? The leaving for that long could be related to  impulsive behaviors that sometimes come with the medications. Might be something to ask the MDS about. Just food for thought. 

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There are no easy answers to this one, some siblings will always honor their obligations, others not so much.  You will never convince siblings who do not wish to be educated, they will always choose to believe what they choose to believe, right or wrong.  As Golden01 has said a review of medication may be in order, and slight adjustments can make all the difference in the world. 

 

There is also the possibility of bringing in home health to see if your parents qualify for some kind of assistance. 

 

Involving a social worker may also offer you some help not only with the future living arrangements of you parents, but involving sibling help.

 

You might also contact a Place for Mom in help for finding a good assisted living facility if you choose that option.

 

An open discussion with your parents doctors I think can also be a step that you can pursue.

 

Whatever you decide just make sure that it is in the best interest of your parents, and not yours or your siblings. 

There are no right or wrong answers, they are always difficult decisions that do need to be made.

 

I wish you all the best.

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LoriD,

 

The only way your parents will be happy is to let them stay put.  Imagine if you lived in your house for 50 years and then is forced to go to a strange place against your wishes.  Do you have the resources to hire a full time or part time caregiver?   Have someone come and keep them company and do things for them.   The only way people will go to assisted living or nursing homes  is when they are the ones that want to go or they have no family or friends that can help them. 

 

As for getting your siblings to help out?  I wish I had that answer.  I go to work full-time and hire a caretaker to watch my mom during work hours and then it's all me.   We are brought up to be independent and ambitious and want more out of life or at least live the life our elders never had.   Time passes and they get older and depend on us and we drop everything to care for them or ship them off to strangers and worry if they are well treated.     It's never easy.  Do what you can live with and be at peace with your decision. 

 

One of the best ways to get a parent to enter assisted living or nursing care is in the case of their having to be in the hospital for something.  If it is clear that they need to go to assisted living or nursing care, the ambulance takes them directly.  It seems it it easier for all if this scenario presents itself.  We did that with my mom, and it did work out.

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Thanks for all your suggestions. My mom is adamately against any type of care. She says that her family should be able to take care of her and dad. She relies on me for most things. I am her counselor and caretaker. It seems lately that I have spending more and more time over at my parents house, either comforting mom or negotating between my mom and dad, solving issues, cleaning, etc. This is very draining especially since I have three other siblings. However, they are less than supportive. I can understand how one can become bitter, specially when one feels overwelmed and drained.  My poor husband, although understanding, I feel a sense of guilt in not spending the quality time with him that I should. 

 

I have suggested that mom and I go to support groups for parkinsons. Maybe she will get a better idea of the future issues that dad will have.  She says she will go, however, I have my doubts.  Having a hard time convincing my mom.  She does not like change and wants to stay in her home.  Dad on the other hand is flexible. I want him to remain at home with care, but my mom refuses any care from outside the home. As for talking with the Doctor, my mother does not want to give up control and refuses to let us discuss issues with their physicians.  I can't force them into assisted living. But it is equally hard to get them the support they need when they refuse in home care as well.  Frustrated that my brothers are of no help.

Edited by LoriD

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