Caregiver for husband with Parkinson's and Lewy body dementia

Posted by dem2301 @dem2301, May 13, 2019

I’m new to this platform but here goes. I’m the sole caregiver for my husband of 48 years. He has Parkinson disease and Lewey body dementia.Today he had a hallucination and as I tried to reassure and redirect he became very irritated with me. I guess I’m not sure what the best approach is. Do I try and redirect or just be there for support. He doesn’t strike out physically. Thank for any suggestions.

Hello @dem2301 Welcome to Mayo Connect. I am glad you found this community. I’m Scott and I was my wife’s caregiver during her war with brain cancer and for my mother-in-law who suffered from dementia. I am sorry to read of your husband’s challenges.

Caregiving is such a challenge and I have often been thankful for the advice, suggestions, and hints I’ve gotten here.

While I am no medical expert, I can relate what I tried at times. Maybe it will help you.

During my wife’s and MIL’s periods of anger and agitation I found being calmly agreeable worked best — at times. Often times trying to redirect caused increased confusion and raised their anxiety as they struggled to understand the change.

Are there other times that are also extra challenging?

Strength, courage, and peace

REPLY

Thank you so much Scott for the kind, helpful insight. Not to sound like a martyr but there are many challenges. His physical and mental abilities are both declining faster than any of us expected and some days I am exhausted and wish I was on a warm beach somewhere. I know that sounds very selfish so please forgive me. As I stated in my previous post we have been married for 48 plus years, and raised 3 kids together. We shared everything now he is totally dependant on me for everything. As difficult as it though I'm still determined to keep him with me. I however need to constantly work on my patience and tolerance skills.

REPLY

Hello and good morning @dem2301 First of all let me say you are no martyr. You are a caregiver! You have every right and reason to speak openly about the immense challenges we caregivers face. I kept a pillow on our sofa, which was my punching bag for those really bad times!

Times of decline were always even more challenging than most so your feelings are totally understandable and expected. It is simply d*mn tough to watch our loved ones struggle and change. I always wished my live could have been a stronger medicine for my wife.

My wife and I had 42 years together and like you were partners in raising our two children and muddle through life. My wife also became totally dependent on me for her care. In the later stages she opted for home hospice care and that assistance to us both was wonderful.

Please remember super heros only exist in the comic books! Superman and Wonder Woman were never caregivers! 🙂

I hope the sun is shining on you both today!

Strength, courage, and peace

REPLY

Yes, I agree with Scott. My husband had hallucinations and delusions and arguing only produced agitation, so best to just agree or try to eliminate the source of the hallucination. My husband insisted the neighbor was flashing lights at him. I discovered it was the wind blowing the bird feeder and the street light was shining off that. No amount of trying to explain to him so I just removed the birdfeeder and that eliminated the problem. Sometimes just agreeing and going on is best.

REPLY

I am with you. I and my husband have been married 64 years and had five children. He is now 89 and has been in a care center for almost 2 years. It is very hard to see this vibrant man unable to do anything except feed himself and even then finger food works best. He still knows family and friends but sleeps most of the time. The care center is 45 miles from our home and I visit every other day. He knows I am there but then dozes until I wake him to leave. So hard. Just one day at a time and I try to keep busy with activities and friends at home.

REPLY

So glad that he still knows you! M y husband is 73 and is still at home but sleeps much and it is heartbreaking. We just celebrated our 49th anniversary.
Best wishes on this sad journey!

REPLY

For my mom, I like to take out photographs taken over the decades and ask her about them (e.g. "who's this?", "was this your favorite vacation spot"…). It seems to calm her down.

REPLY
@maryterry

So glad that he still knows you! M y husband is 73 and is still at home but sleeps much and it is heartbreaking. We just celebrated our 49th anniversary.
Best wishes on this sad journey!

Jump to this post

'sad journey' indeed @maryterry So difficult to watch our loves ones in these situations. I think this, the heartbreak on a day-in-day-out basis, is one of the often overlooked and difficult challenges of caregiving (especially by those who have not been one)!

I wish you well each and every day!

Strength, courage, and peace

REPLY
@grecarmar

For my mom, I like to take out photographs taken over the decades and ask her about them (e.g. "who's this?", "was this your favorite vacation spot"…). It seems to calm her down.

Jump to this post

Nice tip, @grecarmar Great idea!

Thank you for sharing that tip! We can certainly all use every tip out there as we caregivers journey on!

Strength, courage, and peace!

REPLY
@grecarmar

For my mom, I like to take out photographs taken over the decades and ask her about them (e.g. "who's this?", "was this your favorite vacation spot"…). It seems to calm her down.

Jump to this post

I tried showing him pictures several months ago during a episode.it turned out to be very painful for him. He wasn't sure who anyone was until I showed him our daughter who passed away from lymphoma 5 years ago. He said it was Amy and burst into tears and started to sob that was his baby girl who died. It broke my heart. Thank you so much for the tip though.

REPLY
@rmftucker

Yes, I agree with Scott. My husband had hallucinations and delusions and arguing only produced agitation, so best to just agree or try to eliminate the source of the hallucination. My husband insisted the neighbor was flashing lights at him. I discovered it was the wind blowing the bird feeder and the street light was shining off that. No amount of trying to explain to him so I just removed the birdfeeder and that eliminated the problem. Sometimes just agreeing and going on is best.

Jump to this post

So true…I learned that with my uncle and then with my mother. It hurts to see this happening but there is no choice except to move on as best as we can.

REPLY
Please login or register to post a reply.