Helping Those Who Care for Parkinson's Patients
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Hello my lovely friends. I am awake in the wee hours of this Thanksgiving morning, feeling the sting of PD yet again. My husband could not tell the doctor what year, month, day "today" was nor could he even put pen to paper in an effort to draw a clock face much less indicate the time on it. He did not even pick up the pen. His understanding had come and gone with confusion entering every conversation but watching and listening as he responded to his doctor's inquiry it seemed different this time. He seemed to be suspended in his confusion rather than it being a momentary lapse of focus. I feel that I have been watching him lose his grasp on reality to such a greater degree just within the last week or two. I have been so on edge in dealing with him; I think I have been realizing that there are so many things that we have already done for the last time. The closeness we shared as husband and wife, as best friends, as the mother and father of our children seems to be fading away as he doesn't recognize old jokes, memories or feelings we once shared. So many interactions just feel like they "miss the mark". I feel that I am left to shield him, to protect him, to love him...but the reciprocal relationship is becoming a thing of the past. PD and the related dementia makes me feel that I wake up to a different husband every morning. I love him dearly and I am grateful for him. I strive to be a better caregiver each and every day though sometimes I fall frustratingly short. Many of you are dealing with loved ones who are more advanced along this debilitating PD journey. Do your loved ones have dementia too? How are you managing? Can you share any thoughts? Thank you for listening and allowing me this self indulgent sadness. I guess some days just hit harder than others. I hope you all make memories to keep this Thanksgiving. I am grateful to have shared some of this day with you. NoMatterWhat |
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I'm having similar feelings. I took mom across the state for her neurologist appointment yesterday...the neuro for her DBS, and basically her main Parkinson's neuro now also. I want to think her worsening confusion and hallucinations are from her meds, and maybe part of them are, but a good part isn't, and it may not matter anyway because she has to have the meds to function. The hallucinations are not THAT bad, but they are definitely worse than they were even a year ago. Her confusion is worse also. ... The doctor prescribed Donepezil, the generic of Aricept, which is generally used for Alzheimer's dementia, but also for Parkinson's dementia. She said it might help with the hallucinations, but probably not with the confusion. (This is when I start recognizing that we are hitting walls in terms of what is available to help her...or anyone with PD.) ... The doctor tweaked her best DBS program a little, but we decided against trying the tweak right away. I think we've probably come to the end of the road for any more improvement with the DBS. ... I asked about the pro duodopa pump that was approved by the FDA in October, but Medicare hasn't approved it but is expected to next year (I read "summer" somewhere, but who knows). This is another "hope" I have, another move on the chess board of Parkinson's, but I have more nagging doubts about its effectiveness with her. I'm getting scared there may not be many more "moves" left to make in this game. ... I remember thinking if the DBS just gave her 5 more years, I would be fine with that. But early 2026 will be end of the 5th year, and "how this ends" is far less abstract than it used to be. Difficulties are piling on, but slowly. I was wondering today if she will ever have another evening where she is mostly "even" (not too "on" or "off"), where she is mostly clear headed for the whole evening. Occasionally there is an hour that almost qualifies. ... Anyway, Thanksgiving was ok. I timed her turkey pretty well, I think, so no major off time. She was napping a half an hour ago, so I got on the computer. Now she's jumped up and cleaning the bathroom, so I turned her DBS down again and hope for the best. |
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I hope everyone had a good Thanksgiving despite the challenges. Oue son drove us down to our other son's house (about 2 hrs away) and hubby did very well considering. We had a nice time visiting with son, DIL and her parents. We have a lot to be thankful for and I try my best to appreciate every minute I have with hubby, family and friends. Hubby takes Donepezil and it does help. Again like all of you are experiencing he has good days and bad. All we can do is get through the bad ones as best we can and be grateful for the good ones. Best wishes and prayers to all! |
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Well, I have caught my breath and need to reach out for more support and advice. Yesterday my husband admitted to me that he does not know me. He wanted to know when the decision was made that I would be looking after him instead of his wife. He asked what his friends would think of me. He did not know we have been married for 38 years. I reassured him and explained everything but it was apparent he did not follow what I was saying. Today, he woke thinking his dream was real causing a lot of confusion for him. Tonight I had to answer all his questions about where we are (home), who are all these people in our house- were we having a party (No, all of the people he was seeing are just hallucinations), can he just sit for a minute before he gets up and gets busy (yes, it is bedtime and he has all night to rest)... I have only just gotten him to sleep. He was worrying about everything because he just could not figure things out. This is awful. He is very agreeable and polite so he had been playing along and it was not obvious that he has not understood who I am. I have tried to prepare myself for this because I knew it was coming. Now that I look into his eyes I know he is not seeing me with love because he does not recognize me. I had to call our daughters and tell them; it was so hard. I hope that he recognizes them this Christmas so that they have this last holiday to remember him adoring them, being the Dad they know. They have been everything to him. I cannot imagine him living without twinkling each time they call. Do any of you deal with this with your loved ones? PD does not always include dementia but my husband's PD dementia is coming on strong. I feel numb. NoMatterWhat |
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Bless your heart NMW I wish I had an answer for you. Probably the best thing to do is call his neurologist and see if they can prescribe some meds to help. I know when my hubby was hallucinating a few years ago that's what I did. Can't remember exactly which med it was - but it helped. Meanwhile just know that all of us are pulling for you. Prayers for you and your family. |
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This sounds terrifying. Mom's neuro is thinking about Aricept/Donepezil for hallucinations, but she said it probably wouldn't help with confusion. ... Mom has confused me with dad, who passed two years ago (and what's worse is I feel like I look more and more like dad every day). And she briefly didn't recognize me when they had her on morphine when she hurt her back in 2018. But she's never been as bad as you describe. Her visual hallucinations are worse than a year or so ago ... Thinking of you. Hoping this is just one of those things that comes and goes, and that it goes soon. |
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Thank you so much for your posts. They hep so much Our daughters are coming for Christmas and they are taking this so hard. We are also expecting my husband’s brother to visit. He had a history of not really wanting to know. It will be a difficult visit. What would I do without this supportive forum and your kind words? Thank you. NMW |
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Poollady and Greyeyed- I have to tell you how very much your responses continue to mean to me. It is terrifying and you have ‘validated’ my feelings. It is a toe-hold on the cliff face. NMW |
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| Well, mom's meds all kicked in about 9pm tonight. She started washing the dishes, which she sometimes does, but she just kept going with more and more confusion. I turned her DBS down hoping that would help, but it didn't seem to do anything. I got her in the bathroom and got a bed shirt on her by 10pm, but she just kept going. I kept urging her to go to bed but she refused. She generally gets more meds at 11pm or 11:30, but I skipped those entirely because she was still going. By 11:45 I was getting mad. She was half undressed again. She knocked over her water cup in the bathroom, wanted to know where her caregiver was (she works 9am to 1pm weekdays, and it's almost midnight), wanted me to get her some pants (she doesn't wear pants to bed, only her adult diapers with a t-shirt). She seemed to think it was time to get up. Then she was crying some, stopped crying, asking who these people were in the house, that she was going to call the supervisor, etc. I told her she was in the bathroom for two hours, and she didn't believe me. She said she was going to call dad to get this all straightened out (dad died two years ago). She had her hair bands in a pony tail just above her forehead (she never does this; who would?). I finally got her moving down the hall and she yelled goodnight into my room when I was walking right behind her. She's finally slowing down some in bed but still mumbling involuntarily like she does in dyskinesia. She said a whole bunch of other things in between all this that also made little sense. It's 12:18 now and she's still mumbling in bed. |
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Sounds like a call to her neurologist is in order Greyeyed. Hubby was kinda sorta the same way yesterday. We had our gift exchange w/son abt 11am, had Christmas dinner about 3 pm. By the time I cleaned up everything I was pretty tired, so I told him I was going upstairs to take a nap abt 4:30. So instead of resting in his easy chair like he usually does, he came upstairs too and got in bed. I went back downstairs abt 5:00 to watch TV but he stayed in bed. Then abt 6:00 our son came over with pumpkin pie for all of us. He finally came back down to join us but he seemed a little "out of it". I found out later that he took his nighttime meds (including Lunesta) at 4:30. So when he really went to bed about 8 o'clock he didn't have any nighttime pills to take so I don't think he really got a good night's sleep. Anyway he got up WAAAY before me this morning, was completely dressed and downstairs drinking coffee by 7:30. We are both at the store now, hope things (and timing) are better today. Hope everything goes well for ALL of you today!! |
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She's better this morning so far. She barely remembered anything she did before bed last night. But honestly, she doesn't remember much even when she's doing well nowadays. ... I messaged her doctor, but I don't know if they will be in this week. |
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| Hope things continue to improve, Greyeyed. |
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I messaged the doctor's office yesterday and asked about the Donepezil, since the pharmacy didn't get the prescription from November. An hour or so later the prescription was sent in, so I went and got it and started her yesterday. ... She slept more than usual in her living room chair yesterday, but she was up until after midnight the night before too. ... We've also fallen behind on her exercises (almost a week now), and her Premarin hormone cream (she finally took it last night after 9 days). She's supposed to take it every other day to help with urinary pain, but I would swear her Parkinson's is overall better when she takes it also. But as usual, she gets everything backwards and thinks she's worse when she takes it. (If there are two options to something, she very often gets them backwards. For example, if I help her with her pants by putting them under her left foot, she raises her right foot, etc. I finally started saying, "Lift one of your feet, I don't care which one, and I'll put your pants on it.") I try not to be frustrated but I often can't help it. |