Not looking for “tips” /advice- just empathy for caregiver spouse

Posted by hmt @hmt, Nov 12 10:47am

I feel very lonely because I have not been able to find anyone who truly understands. Friends try to be supportive, but no one really gets it. I have tried several support groups, but my husband doesn’t really “fit” into any of them, so it makes me feel more alone, like what is really going on? My husband was diagnosed with PD in 2018. My sister has had PD for 22 years. I know people say every Parkinson’s profile is different, but theirs is very different from each other. Sis exhibits the classic motor symptoms, mostly. Falling, dyskinesia, voice, facial masking. DBS helped her a lot. So I thought I knew what to expect for my husband. His symptoms have been progressing very differently. He seems confused one day and “with it” the next, but overall his judgment is “off”, he is what I call an “unreliable witness”, ie. confabulations, misunderstandings, miscommunications, just overall illogical- not exactly delusional but sort of. REM sleep disorder, dysregulation (too hot/too cold, low BP), word salad, poor executive function, anxiety, etc.. He started having hallucinations and in 2022, the neurologist agreed that it was beginning to look like Lewy Body Dementia. (PDD because of the timing) He also shuffles, falls occasionally, but still manages all his ADLs. So, I started joining LBD groups, but their spouses are so much worse and progress so much faster. And after the doc changed the meds, things seemed way better. So I thought, maybe garden variety PD after all. So I joined a PD caregivers support group, but they talked a lot about motor symptoms and wheelchairs, which also didn’t fit my experience. My husband’s progression is glacially slow, and he’s really a lot like a toddler -very willful, stubborn, contrary, wants to be the boss even though I have to take care of everything even slightly complex-which is pretty much everything and he can’t seem to recognize his limitations. So it’s exhausting but he can walk, dress, shower, etc. I just feel like we’re in limbo and when I hear and see others who have PD, he kinda fits the profile, and others who have LBD he kinda fits the profile… so I wonder, is this something else? Or can anyone relate and say, oh, yeah, that sounds like it’s gonna progress to….what?

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s100 | @s100 | Nov 17 9:49am

You description fits my husband. The frustration, exhaustion, uncertainty, sadness can be overwhelming at times. Sending you a giant hug. Wishes for lots of patience and strength.

billiekip | @billiekip | Nov 17 10:09am

I'm no doctor, but your husband's symptoms sound like ALZ to me. I felt like I was living with a willful 4-year-old who was valiantly fighting for his independence but unable to fulfill day to day tasks. Instead of understanding his limitations and accepting help from me, he would get frustrated and angry. I realize now that the beginning bickering between us was the result of him being unable to remember what was said, so he would deny it. He refused to have his hearing tested which was abysmal, so much of the miscommunication was attributed to that problem. He also had hallucinations and paranoia with constant checking that the doors were locked. The ALZ diagnosis was a result of dangerous sundowning excursions. I think a second opinion is warranted-- not that a different diagnosis will make much difference. Each patient is different, and we all have our lines in the sand. Mine was physical aggression from a mild-mannered man who was no longer in control of himself. You must decide for yourself what quality of life you need. On a plane you put the oxygen mask on yourself first before you help another. You matter. Now that my husband is in a Memory Care Facility, I am myself again. My blood pressure is normal; I feel like a weight has been lifted from me. I can now enjoy our visits together and look forward to seeing him. Is this the life I imagined for us in our dotage? No. But it is the path are on. You have no notion of how strong you can be when difficult decisions have to be made. Big hug to you. This is tough sledding, no doubt about it.

jojok | @jojok | 6 days ago

My husband has tremors on both sides of his body and recently fell and broke his hip. However before that he was in good shape after spending two weeks in a psych unit where his meds were balanced. He had been having serious sundowner activities, violence that he had never had before, and now he takes a medication with his dinner that helps him sleep for close to 12 hours except for occasional bathroom trips. In the morning he takes an antidepressant and he is his old self again except for the physical weakness, tentative walking with a walker and having very little short term memory. He also takes carbidopa-levodopa which has eliminated freezing and reduced tremors. What he needs most, and loved about the psych unit, are daily social activities. I'm trying to find day care situations where he can have some enjoyment besides watching television all day. I guess what I'm saying is that when PD is present with dementia it can be supported with medications to make life bearable.