[Ep: 6] Caring for a husband with Lewy Body Dementia

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In case you haven’t met me, my name is Natali Edmonds and I am a board certified geropsychologist. That means that I am a clinical psychologist who specializes in working with older adults. One day, while hiking a trail, I came up with the idea for Careblazers and I decided to see if posting videos online could provide help to the many other Careblazers in the world who don’t get to have help come directly to them in their homes. I hope that this work helps you in some way on your caregiving journey.
#careblazer #dementia #dementiacare

[@DementiaCareblazers]

Feel free to leave your words of encouragement or support for Sally below. :)

[@lauraroberts8879]

As difficult as it was to be caretaker for my husband who had FTD, it has been much more difficult to live without him this last month.

[@DementiaCareblazers]

Sending you love, Laura.

[@kennethford8394]

OMG!!!!!!!!!! My Wife Was A C.P.A. for 25 plus years and this is exactly what took place with us the job situation was just like what we went through she is now on Hospice but this gave me chills!!!!!!!!!!! Thank You So Much Dr. Natalia for this pod cast.

[@reneeroman9059]

Hi Sally, I'm thinking of you and wishing you and your dear husband the best. I am the surviving spouse of this awful Lewy Body disease. Our stories were different, but the journey is the same, and it's difficult. I had the good fortune to reach out and receive help from a variety of resources. My son also moved back into our home to assist with his father. We lost the battle to Lewy Body on August 12th, 2019. I hope that you are able to get assistance as your husband's disease progresses. Your strength and love is inspiring. Thank you :)

[@janthrelkeld9610]

Sally, you are so strong in solving these challenges with loving ideas.

[@janebooze7408]

Sally, you’re amazing, and have a truly supernatural love for that dear husband of yours!

[@rlongjr6164]

I totally get it about the signs and not really putting 1 and 1 together .. until my wife forgot our youngest daughter's birthday, which is Memorial Day, and the fact that she never forgot birthdays, we weren't planning on seeing a doctor.

[@maryharris4616]

Yay Sally, such love! You are amazing. Enjoy the time you both have together.

[@barbarahawkins7864]

I’m thankful for the great info... am an RN taking care of hospice patients and all of this will help 🌸

[@nancyobrish2899]

This was very helpful to me. I did not know how to handle the driving part. Our Nurologist told me not to let him drive. And he gets made whenever I try to drive him. Also important knowledge about calling the police. Thank you so much for this info. I will be taking the course, Dr. Natilee, when you offer again.

[@theplightattendant]

I'm so glad I found this video and Careblazers. My dad got a diagnosis of mixed dementia (Alzheimer's, Vascular, Lewy Body) over the summer. My sister is his primary caregiver and is just amazing with him, as she always has been. My goal is to learn as much as I can so that I can be as much help to both of them as possible. The caregivers are often overlooked as I've noticed.

[@maggiedoor6093]

If you know dementia is in your family history, then take out insurance coverage early that covers for long term disability. Get coverage that will pay off the mortgage, pay off any loans, provides nursing assistance etc. Some insurance plans will pay a wage each week to cover expenses.

[@timperritt]

Sally, a truly inspiring story. I wish you all the best in your journey.

[@Cayuse2009]

I'm 67, diagnosed with Dementia, which I have had for about 8 years, and live alone on a ranch. I retired at 60 because I was responsible for millions of dollars in contracts and didn't want to mess up. My wife of 30 years, whom I supported because she couldn't hold down a job because she was a narcissist, filed for divorce when dementia caused me to retire and my income was cut in half. She got over half of my life savings in divorce court and promptly found another man. I used to also work as an engineer and designed many projects. Now I can't even balance my checkbook. I used to use computers every day, but now I struggle to even go through the steps to get to youtube. I ran ranches and farms but now mowing the lawn is a challenge. I cook the same thing every day (eggs and peanut butter/ jelly sandwich). Dementia, It's not fun.

[@carolaskitchen8969]

Thanks so much for sharing. My husband refuses to go to neurologist!! He thinks there is nothing wrong with him. Our gp has given him 2 medications. They don't work.

[@rlongjr6164]

Wow .. what a wonderful company .. an awesome thing they did !

[@kookykreek]

When this lady spoke of the strategies used to solve the smallest of problems and then said why didn’t I think of that? I feel the stress is so overwhelming that all your energy is spent working on the bigger things, and those little things just go by.

[@bushidooffaith4706]

Thank you Sally for sharing your story. I especially like when you said, that we need to learn to trust ourselves because we are the only ones there 24/7. I read something that resonated with me. By Ursula.k.LeGuin It is good to have and end to journey toward. But it is the journey that matters in the end. Our memories of this journey is what will keep us going in the end. God bless 🙏 you both

[@DementiaCareblazers]

Beautiful words!

[@barbaracarr17]

Thank you so much for sharing your story with us. What a journey you and your husband have been on. Everyone's journey is unique and helpful to hear about

[@denieseklinethatcher2715]

2nd time thru. Thank you for sharing your brave, loving, & heartbreaking journey. So many do not realize the vulnerability of those whom love unconditionally those who face such difficult diseases.through all the lack of knowledge of systems who are to help but so often do more harm. Ignorantly due to their lack of knowledge. Your tragic experiences with husband happen all too often. Through no fault of those of you & he who are vulnerable. Thank God for his protection of you & your dear husband & family. 🙏🕯️🙏

[@jodiebird1551]

This happened to a mate who gave up everything for loved one but when delusional he started ringing the police and they abused her as his flat was trashed due to his condition and they got social workers who further abused her and he lied to them and hospital, it was a nightmare. It took a visit from a go between who on a visit said to her 'he thought they got it wrong' Just before lockdown and a planned meeting at family court the go between attended a pre court meeting to remove power of attorned and harm mate she rang him and he said the case was dropped as it was not warranted. No apology from safeguarding as shoddy social workers rang the job she had to leave due to the situation telling them she was on safeguarding. This needs addressing.

[@j.c.469]

Good info....my husband has VascDem. He was in Assisted Living for 4 1/2 months, then walked out last August. Struggling how to get him into a better place and needs Skilled not Assisted Living. These diseases are so hard for Caregivers too, blessings to you Sally

[@denisedavies5950]

❤ Thank you for sharing. All this information helps me on this Carers journey.

[@judysorenson7922]

Very helpful!

[@victoriajohnson3034]

As a career care giver. You shouldn't let them drive. But you can't make them not drive if they have a valid drivers log licence. So how are we supposed to handle our they insist they are driving.

[@kp7032]

You can raise it with your Country’s driving agency. In the UK a person can declare themselves safe to drive when their licence is due for renewal at 70 years. However, if care givers are worried, they can raise concerns with that person’s GP, and the DVLA, although that’s not always quickly dealt with. With my dad, it took a while as he could drive safely when being assessed, but became erratic when driving without being assessed. Thankfully his car failed its MOT so we could scrap the car, and made it clear that he could use his bus pass to get to places, or we’d give him a lift if the destination was not on the bus route.

[@normanrubenzer]

thank you for this my wife is starting to hallucinate with her parkinson and i think she has lbd as well going to doctor on friday.

[@toryberch]

Thank you Sally for the great tips on driving. I have just been diagnosed with Lewy Body and my neurologist said because I am still in the beginning stages he feels I'm ok to drive still..but I attended my first support group visit and everyone there said no no no please don't drive. One of them said my family member is in the insurance field and said legally if you knowingly drive after receiving a diagnosis and you get in a bad accident you could lose everything you own as yours insurance carrier would not pay. Does anyone know if this is true? I'm willing to let go of my driving if it is law. As far as I know I'm not dangerous behind the wheel. But I also don't know what to expect, what is laying around the corner that I'm not aware of?

[@kathebeaver3227]

God Bless

[@Faith-nl3di]

Please tell me Sally, what medication is your husband on that has helped. My husband is on Aricept.

[@Educ652]

Namenda and the Exelon patch.

[@kevinfalcao8657]

My patient WD takes arricept and nemenda . They were ineffective . Still taking them 2 years , no improvement ... don't hold your breath.

[@crystalline9098]

What medicine was he on for the hallucinations?

[@DementiaCareblazers]

Olanzapine, amisulpride, ziprasidone, and quetiapine are equally effective against hallucinations, but haloperidol may be slightly inferior. If the drug of the first choice provides an inadequate improvement, it is probably best to switch medication after 2-4 weeks of treatment.

[@vickyholder1310]

❤❤❤

[@denisedavies5950]

❤

[@maryroberts8566]

Have you noticed his hands and arms being soaking wet ?