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sito2x Posted May 2016

My boyfriend has Parkinson's Disease with some dementia.

He was receiving some in home care. We broke up for two months and I don't know what happened during that time. He was suddenly placed in an assisted living facility. Obviously, he did not want to go but he truly could not take care of himself, dressing due to the PD was a problem and he could no longer cook for himself. He is legally blind. Since he's been placed in a/l, we need to get permission each time I want to take him out, he's not allowed to have his credit card, so I pay for anything we do and then his daughter reimburses me. Of course, she has power of attorney over his medical and financial situations. His daughter was never involved in his life for the eight years we've been together. I took him to all his doctor apps, dispensed his meds when he became unable to do it himself, was on his doctors lists so i could communicate with each of them about concerns I have and they could talk to me. Never did she go to an appt, call him to ask anything about his health to either of us, was not there AT ALL. The only time she went to see him was to pick up his bills because he no longer knew how to use a calculator. He still had control over his finances. I do not know if he has been deemed incompetent, she would not tell me what happened that he was admitted into a/l and she has removed me from being able to speak to the doctors and won't allow me to go with them to the doctors. He is extremely frustrated and angry with her lack of her respect as to what he wants. Is she overstepping her boundaries and does he have any rights under these circumstances. He has voiced his wants to her but all she says is she has power of attorney. We are both angry over the way she is handling this situation. I feel very frustrated for him because my hands are tied to help him.

anonymous281963 May 2016
Visit AC site, Elder Care, Conditions, Parkinsons, Don's story:

Maintaining close relationships with a spouse, and other family and close friends can be difficult for people with the disease for a number of reasons. In addition to general mobility issues, the neurological condition can cause hypomimia (paralysis of the muscles in the face, leading to an inability to smile, frown, etc.) and hypophonia (muffled speech that is low and hard to hear), which can affect an individual's ability to effectively communicate with their loved ones.
What is the most challenging aspect of dealing with this diabnosis at such a young age? "The loss of my freedom… Physically and mentally not being what or who I used to be," Don says. "I never thought I would be dependent on so many at 57."

anonymous281963 May 2016
Sito2x, Yes, I agree with Veronica and Army retired.
Think of getting permission to leave the AL with your boyfriend as a security measure for someone not incompetent, but vulnerable. Like signing him out with the doorman of a sophisicated highrise-when are you returning?

What would you think if his other girlfriend had signed him out and not brought him back in time for your visit to sign him out? I doubt if his daughter, the POA would even stand for a second girlfriend-at this point, be grateful that you are it!

With Dementia and Parkinson's, the symptoms can vary widely in one day, the meds required add to his vulnerable state. He needs the POA because no one knows if he is really competent or not each hour. Try thinking of his daugher as your ally, not the enemy during this difficult time.

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Veronica91 May 2016
site I think you have actually got the best situation you could hope for under the circumstances. Not a happy situation for either of you and you have stated your terms so try and enjoy the freedom the two of you still have together. His illnesses will progress so try and live in the day.

Labs4me May 2016
A POA cannot trump over the decisions of a competent person. Whatever happened in the two months you were broken up changed the dynamics of your boyfriends life. His daughter has now become the responsible party for his care. Enjoy the relationship you have with your boyfriend and be thankful the daughter stepped up to the plate when you left.

freqflyer May 2016
sito2x, may I ask if you are staying with your boyfriend 12-24 hours a day? Or just a couple of hours of date time? Do you see him the same time each day or vary the time day to day? Why I ask is that those with dementia can act normal in certain situations, but after hours find some things complex.

If your boyfriend changed his Power of Attorney, who would he pick? You already mentioned you wouldn't want to be on the short list.... it could become complicated. Who else would he trust with his medical and financial decisions?

assandache7 May 2016
If he feels he is capqble of making his own decisions then he can call his Attorney and change his POA ...

sito2x May 2016
All he wants is to be able to decide for himself if he wants to go out with me or not. He is certainly capable of making that decision for himself. Even though he doesn't like being in A/L, he knows he cannot stay by himself. The anger he feels is the lack of making decisions he is still capable of making. He is sorry now that he gave her power of attorney. Trust me, I do not want the responsibility. I just feel like he should make those decisions he is still capable of making. He still knows how to control his spending/or not. He's always been frugal, there is no sign of being taken advantage of on that level. His abilities really haven't changed from when we were together, nor has his personality. He was falling more apparently.

freqflyer May 2016
sito2x, dounds like boyfriend's daughter kept her distance prior so that the two of you could be a couple and you be her Dad's caregiver.... much better than a meddling daughter who is into everyone's business.

Once the two of you broke up, his daughter had to take control of the caregiving situation, thus placing her Dad into a place where he would get the correct level amount of care. His illnesses could have progressed while you were away for two months. Sounds like you and him are trying to get back together again and be grateful that his daughter is letting the two of you go out together.

Please remember that your boyfriend has dementia, and he might be in a stage where he is angry at everything.... it's the dementia doing the talking. The things he might want he is unable to have due to his health. No, his daughter is not overstepping any boundaries, she is doing what she feels is best for him, even if he doesn't like it.

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