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My mother lives with her partner of almost 30 years and has live in aides. She has Parkinson's Disease and is definitely getting worse. She's frustrated because she can't "keep words in her head." She calls herself "stupid" and "kooky." My partner says it's because she is not being stimulated on a daily basis. I checked to see if there is adult daycare near where she lives and there's nothing. I'm not sure how much her aides participate in keeping her alert and active during the day. Her boyfriend says they go out for walks and play games but I don't know how much to believe. I don't know why my mother can't sleep at night. My partner and I think Assisted Living would be a good idea for her but she is dedicated to her boyfriend and wouldn't think of leaving him. She owes him everything and thinks she can't function without him. I'm very sad and frustrated. I have a brother who lives in Washington DC and can come visit her. He's in a state of denial with how bad she is.

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Why do you feel that he partner is not a good caregiver to her?

It's anyone's guess why the depression, but would you NOT be depressed if you had Parkinson's and it was robbing you of ability to express yourself well? The partner has told you that they do as they wish, playing games, doing walks. We it ME I would hate going out for "activities" when I am in a state too impaired to participate fully, but that's ME. So ask your Mom if there is anything YOU can do.

What has the partner said about her sleeping? Have they discussed with the MD?

I see this as a lack of honest communication, you to Mom and you to Mom and partner. I cannot figure out what you have against her chosen mate.
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Does your mother have sleep disturbances that are associated with Parkinson’s?

What does her doctor say about her inability to sleep?

Has she been diagnosed with dementia? “Activities” may not help her word-finding abilities.

More information would help us help you.
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Beatty Sep 2023
Very good questions to ask.
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According to your profile, your mother is 99 yrs old, suffering from worsening PD, has live in aides and a long term partner yet your partner says she's not properly "stimulated"?? What does your partner know about PD and how it progresses in a 99 yr old woman????

If mother wants AL, both of them can move into an apartment together. As my folks did. Why should they be separated or your mother be forced to function w/o her partner of 30 years????

If moms partner agrees she's having sleeping issues, her doctor needs to be informed and asked for advice. A discussion about depression and possible Parkinson's related dementia should take place as well.

I'm not sure what kind of activities and stimulation you feel will "snap" mother out of the disease process she's suffering. There's no cure for PD or a quick and easy fix that will make her life great again. That ship has sailed. While it's sad to see a parent decline and suffer in any way, the only goal at this juncture should be to keep her comfortable and relaxed. Not to force any huge changes on her to further discombobulate her already confused brain. Familiarity is best for her.

Good luck.
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Why would her boyfriend lie about her going for walks and aides paying attention to her? They’ve been together 30 years and she seems to think he has her best interests at heart. He must be as unhappy as she is about her diagnosis, and it appears that they want to stay together.

Her aides and boyfriend probably stimulate her as much as possible. Since she has the care she needs, let them handle it. Your partner may not be qualified to decide that she needs more stimulation. If I were your mom, I’d hate having someone encouraging me to be their dancing monkey! There’s only so much someone in her condition can handle, and more stimulation isn’t likely to help her recall words, etc. There’s a disease in progress. Stringing beads at daycare won’t stop it.

About her depression and lack of sleep, it’s making you uncomfortable because you’re a caring daughter. She’s venting to you, and it would be nice to help, but you pointed out that you’re not in a position to do much. If you were there a lot, that wouldn’t help her sleep. Neither would your brother’s presence. Better to MYOB and remain a good listener.
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It's OK to be sad & frustrated.

Is your Mother really 99? If so, be kind to yourself & accept you can't fix old age & disease. The brighter side is you can still talk with Mother on the phone. Maybe one day you will talk, read or sing while she listens to your voice.

I did a little research. The below statements are all taken from Parkinson's Disease organisation website.

- Sleep disorders are prevalent in Parkinson disease. Up to 75% report sleep related symptoms
- 50% will experience some form of depression.
- 50% will be effected by Mild Cognitive Impairement.

As I said, it's ok to be sad.
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