Caring for spouse with Parkinson's: Some days he's overwhelmed

I am my husband's caretaker and noticed what you describe. His old self appears and you begin to think/hope all is ok but then the Parkinson's symptoms show up again. Can be very frustrating for me but I imagine how devastating it is for him. Once a neurologist told me 'every day is different' and I now use that phrase often. However, often mood, thinking pattern, pathological exhaustion and extent gait freezing and shaking will change during the day also. DOPA quickly makes a big difference but even the effect of the drug is different from time to time. Met several people with Parkinson's in my new community and am amazed by the wide range of presentation of this disease.

I appreciate your point of view. I know that everyday can be differentto the extent of exhaustion for us both. I have to do things he used to do and I see frustration in his eyes and I think we really both did so many things. The hardest for him is having to allow me to help him with bathing , shaving and sometimes dressing. I can always tell when he has difficulty, because he looks at me with a look that says "help me". His meds work..but when he starts to lose the effect of increased dopimine..he is like someone with a low blood sugar.I have dealt with a long distance with my Dad and my brother who have Parkinsons as well . My Dad died 6 years ago. My brother however is 66yo and in stage 5 with hospice. He has lewy body disease. He is totally different then my Dad..We just saw him a couple of weeks ago. It was heartbreaking. My husband is nowhere near this level. I liked the way you mentioned what your neurologist said. Thank you!!

You have been immersed in Parkinson's for a long time. I wish the experience would make taking care of you husband easier but likely the knowledge can add to the stress and anxiety. There are so many emotions swirling in us. Caring,love and wanting to help mixed with exhaustion, frustration, loss, anger, guilt to name a few.
My husband has only had diagnostic symptoms for 4 years - but the general exhaustion, slow loss of executive function for much longer. As a highly educated Ph,D, he was able to mask the symptoms for a long time.
Can you tell me more about Lewy Body disease.
Wishing you strength, patience and boundless love.

I think I sent my comment. If not let me know.

@s100 Here is some information from Mayo Clinic on Lewy Body dementia.
https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025
Do you have any help or any outlet for yourself?

Hi Sillyblone - don't think I saw your comment but appreciated the virtual hug.

Thanks @becsbuddy. Read the piece on dementia with Lewy bodies. How is it diagnosed and how is it differentiated from Parkinson's without biopsy or autopsy?
Yes, I have wonderful helpers at night but I stay up too late.

One more question. How do I start a thread about Nourianz. This drug in combination with DOPA appeared to reset my husbands disease. He regained spatial abilities, better thinking and memory, functionality. The drug appears to have minimal effect in most people - a minor help during the off-period. I wonder if any others responded as my husband did. Our neurologists has asked colleagues and I asked the CVS Specialty Pharmacists but responses were it is a new drug and responses are the off-time improvement not the major changes.

@s100 To start a new discussion, go to the Parkinson’s Support Group page where all the different discussions are listed. Just part way down on the left side are blue words that say ‘start a discussion.’ That’s where you start one!! Be sure to write it out by hand, first, so you can make all the changes you want. I’ll be watching for it!

Lewy Body Disease was explained to me as a form of dementia that is different for everyone who has Parkinson's. My Dad would see people and imaginary dogs. My brother explained he saw a strange light/white something. He still goes to church and helps others. He is a kind soul and would give you the shirt off his back. The last time I saw him he was in a frozen state. He did not blink or respond to anyone. His mouth was quivering. He calls my husband to check on him. He truly is an awesome man. I love them both. I hope that helps. My heart goes out to you. Take care of yourself.