DLB Parkinsons with Lewy Bodies - Need some help making decisions for my dad...

2,948 Views | 21 Replies | Last: 2 yr ago by AgResearch
Human Being
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AG
I know this isn't the right forum, but I know there are doctors here. My dad 80 is in the hospital today getting an MRI and spinal tap to do diagnostics. The neurologists have said they think it's DLB Parkinsons. It's been a really terrible few weeks. He's gone crazy seeing things and thinking he's a hostage and paranoid. He's not the dad I know anymore and it's not his fault. After the diagnosis is made we are trying to make a decision on where he should go. They have given us a few options for skilled nursing facilities. My goal is to shorten my dad's suffering as much as possible. He's a christian and If God isn't going to heal him then I want him to pass away quickly. His quality of life is gone.

I see online some people saying it is an option to hire a 24 hour in home nurse. Do you think it would be better for my dad to go home and have a 24 hour nurse or go to a skilled nursing facility? My mom can still help him, but barely. He gets out of control unless the meds have kicked in. I know he wants to go home.
Azeotroper
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My mother in law had Lewy Body dementia. We tried keeping her at home but would not attempt that again. The good and bad about her case was it went south very quickly. I have no advice but will pray for your family.
BrazosWifi
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No advice here. Just prayers.
Human Being
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AG
Azeotroper said:

My mother in law had Lewy Body dementia. We tried keeping her at home but would not attempt that again. The good and bad about her case was it went south very quickly. I have no advice but will pray for your family.
Thanks for the info. My dad is 80, has a pacemaker. How long did your mother in law live after they diagnosed it? How old was she?

I've cried my eyes out for two weeks now I'm just wanting this to end for my dad. I refuse to get angry and bitter at God though. This is his plan, but I just want it to end soon.
Azeotroper
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I don't remember how long she lived after diagnosis. Less than a year.
Human Being
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AG
Azeotroper said:

I don't remember how long she lived after diagnosis. Less than a year.

That's good to know. Thanks. It seems like it has happened so fast so maybe he passes fast like your mother in law. Sorry you went through that.
Prexys Moon
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AG
my dad has parkinsons. They don't think lewy body but the dementia and hallucinations are worse and worse. He thinks my mom is "another woman". He is 76. Right now my mom is taking care of him at home but it's obvious some hard decisions are coming soon.
Joan Wilder
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AG
HB - I'm really sorry your family is going through this. My dad had LBD with his Parkinson's and it's upsetting and scary and awful for everyone. We had good luck with the medication Nuplazid so ask your neurologist about that.

Memory care facilities are helpful but it depends on how serious his hallucinations have become (violent?) and his level of independence. My dad was able to live with my mom managing his meds, and we had a care person who would sit with him when she went out and overnight so she could sleep. We knew memory care was likely in his future.

One thing I found useful was "yes and" ing him when he'd tell stories or describe what he was seeing. There's no point in arguing or correcting the person, let them know they're safe and talk with them. My dad loved music so we could play music and he'd sing along, or talk about his job and things he'd done and seen.

It's tough. It's awful and it's sad. Seek out some support groups or message boards.
Human Being
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AG
Clarke95 said:

HB - I'm really sorry your family is going through this. My dad had LBD with his Parkinson's and it's upsetting and scary and awful for everyone. We had good luck with the medication Nuplazid so ask your neurologist about that.

Memory care facilities are helpful but it depends on how serious his hallucinations have become (violent?) and his level of independence. My dad was able to live with my mom managing his meds, and we had a care person who would sit with him when she went out and overnight so she could sleep. We knew memory care was likely in his future.

One thing I found useful was "yes and" ing him when he'd tell stories or describe what he was seeing. There's no point in arguing or correcting the person, let them know they're safe and talk with them. My dad loved music so we could play music and he'd sing along, or talk about his job and things he'd done and seen.

It's tough. It's awful and it's sad. Seek out some support groups or message boards.
Thanks Clarke, for taking the time to respond. Right now we are in the phase of trying to determine his medication. A few days ago it was really terrible with hallucinations, but it seems like now the meds are working. He's still in the hospital and will be transferred to a facility in Waco. We are in the process of trying to determine what facility. Mom was a teacher Dad was a football coach so they don't have a lot of money so I'm also concerned how this is going to work financially for them as far as the facility cost goes. I see that your Dad was able to live with your mom. Do you think that was a good idea? Do you know how much it cost for the person that came in to help your mom?
3rd Generation Ag
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AG
Ask if this qualifies for Hospice care.
PJYoung
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AG
Man my parents are 81 and 79 and in fantastic health and still both very sharp for their age.

Prayers for what you guys are dealing with. Terrible stuff.
dermdoc
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AG
Cruel, cruel disease.

Couple of things, I took care of my mom with dementia and have had quite a bit of experience with patients who have it.

Every situation is different and all you can do is see what works best for you and your family.

To be honest, I would care more about how your mom feels about where he should be. He is not himself anymore and I would defer to her wishes.

My mom got mean and it really bothered my sisters, fortunately my med training made me realize this was not her anymore and you have to not listen and just be patient and kind.

This stuff gets really expensive whatever route you decide on. Might want to have a family meeting about how financial stuff will work so there is clear understanding and hopefully will not become a point of contention later.

God bless and remember God is good and something good will come out of this.

Lean on your faith and your friends.

Prayers.
No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. See full Medical Disclaimer.
dermdoc
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AG
3rd Generation Ag said:

Ask if this qualifies for Hospice care.
And this is a great point.

It got a lot easier when we went to hospice even though she was not near death.

Gets rid of the ER visits for falls, etc. and you can usually find a nurse, NP, or even doc who will simplify and streamline things.
No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. See full Medical Disclaimer.
Joan Wilder
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AG
My parents lived in an independent living community and the person they brought in was essentially an elevated "sitter" - she'd help him get dressed and showered, cook breakfast some days, and just keep an eye on him. That worked for them but it was definitely hard on my mom. They wanted to stay together and being able to have dinner with friends and see people helped keep him social and mentally active. My dad was always best when he was home or with family. Any time he had to go to the hospital or rehab it could cause a lot of confusion and concern. Memory care facilities focus on routine and safety. My dad passed away before we needed that route (he fell and broke his hip and then passed in the hospital).

The medications are challenging to find a balance. Some of the meds to make you more mobile (levadopa) can exacerbate hallucinations...and some of the hallucinatory meds can just make the person sleep all day. It's HARD.

Talk to a social worker at the hospital for resources on home health workers, and work with insurance/Medicare.

Sorry y'all are dealing with this.
Joan Wilder
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AG
Dermdoc's advice is great. Every situation is different and all that matters is what is right for your family to do what's right for your dad.
OasisMan
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AG
Human Being said:

...The neurologists have said they think it's DLB Parkinsons. It's been a really terrible few weeks. He's gone crazy seeing things and thinking he's a hostage and paranoid...
if the MRI and tap are negative,
could consider Nuplazid -- for parkinsons related psychosis
college of AG
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OP,

I am so sorry to hear about your dad. I run a skilled nursing facility and fully understand what you are saying (minus it being my dad).

There are good and bad SNF's. Find one that wants to communicate with you. Ask alot of questions. Visit prior to admit a few times, if possible.

I would love to help you answer any questions you had about skilled nursing. Ericwood zero zero @hot mail.

I have an employee that worked for the state doing long term medicaid applications for almost a decade before coming to us. She is wonderful and has helped a bunch of people get through the process of paying for LTC. I am happy to have her assist you if you want help, for free, because you have enough to worry with without that. If that is something you want, let me know.

I am on vacation and service is spotty, at best. But I will be answering emails when I can.

Our bodies werent made to last forever on this earth. Find your comfort and peace in knowing your dad will be healed to heaven. Praying for your family.
aginresearch
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AG
My father has DLB with Parkinsons. He's 72 and still living at home with my mother. He was diagnosed about 2 years ago but it was clear prior to the diagnosis there was an issue. He has constant hallucinations but from time to time he is able to think clearly. He has significant mobility issues, especially since last September when he fell and broke one his hips and requires at least one person to assist him.

My mother has hired a number of caregivers to rotate through the week. She does not have a caregiver 24 hours a day. I am the backup caregiver whenever someone falls through or help is required outside of a caregiver being present. This seems to work well enough although the constant managing of caregivers wears on my mother. It is my opinion that being at home is far far better for my father than being in any other facility. When he has been in a hospital or facility his confusion seems to get worse.

We've found that agencies such as Comfort Keepers and Visiting Angels have issues finding help that is suitable to the requirements of my father who requires significant personal help. The best people we've found are CNAs although they are hard to find available as they are in demand.

Like another poster mentioned "playing along" with his hallucinations has been the best course as contradicting him leads to other issues. Assuring him that things are under control and you are there to help seems to help smooth out the moments when he is most agitated by the hallucinations.

We've had him in Home Health care since his return from rehabilitation last fall but will be moving him to Hospice in the next month. He will "lose" the doctors he currently sees in the BS&W system but he can always pay cash to see them if we so desire. I think the move to Hospice will save my Mom some out of pocket costs related to medical supplies and slightly increase the number of visits by a nurse. Although my parent's were lucky because they decided to pay for Long Term Care Insurance and that has kicked in for my father.

This is a challenging disease that is devastating to watch slowly kill your loved one. In some ways I guess it is not as bad as Alzheimers because they still remember who you are and past events. In other ways it's terrible because it robs them of their mobility and ability to really do anything for themselves
Reveille
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AG
Human Being said:

I know this isn't the right forum, but I know there are doctors here. My dad 80 is in the hospital today getting an MRI and spinal tap to do diagnostics. The neurologists have said they think it's DLB Parkinsons. It's been a really terrible few weeks. He's gone crazy seeing things and thinking he's a hostage and paranoid. He's not the dad I know anymore and it's not his fault. After the diagnosis is made we are trying to make a decision on where he should go. They have given us a few options for skilled nursing facilities. My goal is to shorten my dad's suffering as much as possible. He's a christian and If God isn't going to heal him then I want him to pass away quickly. His quality of life is gone.

I see online some people saying it is an option to hire a 24 hour in home nurse. Do you think it would be better for my dad to go home and have a 24 hour nurse or go to a skilled nursing facility? My mom can still help him, but barely. He gets out of control unless the meds have kicked in. I know he wants to go home.

This is an extremely debilitating disease. I would look into hospice care as they have the most experience with dealing with the family. Helping your mom deal with this will be extremely important and she will need lots of emotional support. At this point he will not now what is going on.
No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. See full Medical Disclaimer.
Human Being
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AG
Ive been wanting to reply and update to this post but i have a hard time making long posts using my phonefirst thank you very much to all that have reached out to me. My dad has been in scott and white temple for the last 10 days i think lost track of time? When he was first admitted he was as i said in my original post out of his mind thinking he was a hostage and cussing which he never does. He also couldn't walk or get up and was peeing on himself a lot. It was really really terrible. The neurologists said they were sure it was parkinsons with lewy bodies. They did a spinal tap and mri and other tests. None of the tests confirm anything really. He was transferred today and I looked at all the discharge papers and there isn't a diagnosis for dimensia alzheimers or parkonsons with lewy bodies. He's doing much much better now. They gave him one psych med but the geriatric doctor said she plans to eventually take him off that. He needs physical therapy. Thats why hes in a nursing facility in waco tonight. We have all been praying for god to heal him or take him home so the fact that they didn't diagnose him with anything I believe is god healing him.

We transferred him to the brazos of waco and im very very concerned because they seem very understaffed and I think he would be safer at home. I think we are going to take him out of there and go the visiting angel route. After seeing the brazos of waco i can't leave him there.
BrazosWifi
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Not that this directly applies to your situation but when my grandmother was nearing the end, if she got dehydrated, she would get combative and hallucinate.

It took us a few episodes before we saw the correlation.
college of AG
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AG
HB,

Sorry to hear that yall are still struggling but Good to hear none of the bad diagnoses.

If you are unsatisfied with the current skilled location, you have 30 days from date of hospital discharge to find some place that fits. Do not think the current situation is a "choose or lose" situation. Take him home and ask around, do your research. You have time. If the home situation works, GREAT. If it doesn't, you can find someplace that can.

AgResearch
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AG
BrazosWifi said:

Not that this directly applies to your situation but when my grandmother was nearing the end, if she got dehydrated, she would get combative and hallucinate.

It took us a few episodes before we saw the correlation.
+1. Friend's dad is the same. Dehydration and/or UTI sets his dad off as well. He has lewy body dementia.
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