Lewy Body Dementia at age 51: Anyone else with early onset LBD?

Posted by jen26 @jen26, Jul 10, 2021

Hello,
I have just joined the group. My husband was diagnosed with lbd 9 months ago at 51. I was wondering if anyone else has a loved one who was diagnosed at younger age than the norm. There seem to be unique issues, and I’ve been told it is usually faster progressing. Is anyone dealing with this?

Interested in more discussions like this? Go to the Caregivers: Dementia group.

Hello @jen26 I am sorry to read of your husband’s health issue. My MIL contracted her dementia in her late 40s and my wife, who had brain cancer with many dementia-like symptoms, in her 40s as well.

Early onset of dementia has many challenges for sure.

While I’m no medical professional, I’m pleased to share our experiences with you. One of our bigger challenges was to prepare all of our legal/estate/medical issues far sooner than we had ever anticipated.

What are your biggest challenges so far?

Strength, Courage & Peace

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Thanks for responding! Where do I start…haha. The top 3 right now are:

1-Physicians who seem to know less about this disease than I know ( and I don't know much) will say to him, "I don't believe you have lewy body bcz I've never known of anyone your age having it. He gets his hopes up and also tells our family that his Dr said that's not what he has. I have to explain to them that he's not entirely correct, and then I have to go thru the process of getting him to understand something is wrong all over again.

2-Being far from retiring, I still work full time. On his bad days I worry about finding someone to check in on him; on good days I worry about staying longer at work when I should get home to him. I'm a special education teacher, so I used to spend many extra hours each week at work. Now I feel guilty about not doing more for my students.

3-The fine line between getting my husband out to socialize and being able to protect his dignity. People seem to accept an elderly man saying things that are odd but not so much someone his age.

Jen

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@jen26

Thanks for responding! Where do I start…haha. The top 3 right now are:

1-Physicians who seem to know less about this disease than I know ( and I don't know much) will say to him, "I don't believe you have lewy body bcz I've never known of anyone your age having it. He gets his hopes up and also tells our family that his Dr said that's not what he has. I have to explain to them that he's not entirely correct, and then I have to go thru the process of getting him to understand something is wrong all over again.

2-Being far from retiring, I still work full time. On his bad days I worry about finding someone to check in on him; on good days I worry about staying longer at work when I should get home to him. I'm a special education teacher, so I used to spend many extra hours each week at work. Now I feel guilty about not doing more for my students.

3-The fine line between getting my husband out to socialize and being able to protect his dignity. People seem to accept an elderly man saying things that are odd but not so much someone his age.

Jen

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Hi @jen26 I sympathize with you on all three of these!

On the physician front, I finally convinced our GP to refrain from those issues with the pat answer of ‘you’ll have to ask your specialist those questions’. Our GP was in way over her head on this area of care, but refused to acknowledge that. So this was a compromise I crafted.
The balancing act between work and caregiving was a huge difficulty for me. When the demands of the two conflicted it was a ‘no win’ I could never figure out. I could only ever land on doing a quick calculation of the importance of my wife’s needs vs. work. It’s a TOUGH nut to crack.

My wife was very ‘normal’ looking, but her executive functions were shot. I grew thick skin, wrote several people off who couldn’t accept this, however did have a few incidents when our children exploded at adults who commented meanly about, to, or made fun of, their mom.

It’s a set of constant, ever changing/evolving conditions for sure.

Strength, Courage & Peace

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Did your mother in law's situation progress quickly? My husband is still able to do a lot, but compared to last year at this time, he has really declined. I don't know whether to expect to continue at this pace.

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@jen26

Did your mother in law's situation progress quickly? My husband is still able to do a lot, but compared to last year at this time, he has really declined. I don't know whether to expect to continue at this pace.

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Hi @jen26 My MIL progressed erratically. She would have a change, then often plateau for a period, and at some later time change again. The plateau periods varied in length. Some were nice and long.

Her changes (declines) were most often precipitated by some change in her routine.

I know each patient’s journey and disease is unique, so this was just our experiences.

Strength, Courage & Peace

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@jen26

Thanks for responding! Where do I start…haha. The top 3 right now are:

1-Physicians who seem to know less about this disease than I know ( and I don't know much) will say to him, "I don't believe you have lewy body bcz I've never known of anyone your age having it. He gets his hopes up and also tells our family that his Dr said that's not what he has. I have to explain to them that he's not entirely correct, and then I have to go thru the process of getting him to understand something is wrong all over again.

2-Being far from retiring, I still work full time. On his bad days I worry about finding someone to check in on him; on good days I worry about staying longer at work when I should get home to him. I'm a special education teacher, so I used to spend many extra hours each week at work. Now I feel guilty about not doing more for my students.

3-The fine line between getting my husband out to socialize and being able to protect his dignity. People seem to accept an elderly man saying things that are odd but not so much someone his age.

Jen

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Jen, my experience with doctors included one who thought my 81 yr old husband was suddenly schizophrenic. On another messaging support group called LBDCaringSpouses, I have met a couple of women and men whose husbands or wives developed LBD at a young age as your husband has. You might want to reach out in their direction as well. And find a good neurologist to help with your journey.

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Thank you for the suggestion…I really appreciate it!

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This is a new thread. My hbd w/LBD had a heart attack Sunday (yesterday). He had a temp pacemaker put in his neck. Had major bleeding due to blood thinners. They had to ventilate him and give him sedation meds because he was trying to get up and pull out tubes. They are giving him Fentanyl and propofol to keep him out. Do either of these drugs or the combination cause Lewy side effects, that I need to worry about?
Your quick reply is appreciated.
They also may start an antibiotic if a lung culture is positive for bacteria. Not sure what they will use for that.
Bflynn54

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@barfly such a difficult situation to be in! Will your husband be in the hospital for a few days? I’m wondering if the physicians would consider a short-term nursing home stay until all the drugs are out of his system. A respite stay will also give you time to re-group…you, also have been through quite n experience. Nursing homes are more like rehabilitation centers and the hospital staff will know the good ones.
I did find the following article that may have some info for you.
https://journals.sagepub.com/doi/pdf/10.1177/1533317515581704
Do the doctors think the heart attack was mild or very serious?

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Thank you for your reply. The heart attack was serious. He is still being kept in a sedated state.
I am not sure if he will ever come home again. I am concerned the meds will take away his last remaining strength.
Yes, I expect a rehab center to start his recovery. Just not sure if I will have to put him in a memory facility or bring in palliative care.

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@barfly

Thank you for your reply. The heart attack was serious. He is still being kept in a sedated state.
I am not sure if he will ever come home again. I am concerned the meds will take away his last remaining strength.
Yes, I expect a rehab center to start his recovery. Just not sure if I will have to put him in a memory facility or bring in palliative care.

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Oh, @barfly Such sad, difficult news. I would think your husband will be in the hospital as long as he is getting antibiotics. While he is there, you might want to ask a friend to “tour” possible rehab centers with you. The social workers or discharge planners on his unit can give you some names or suggestions. They can be extremely helpful. Just tell the nurse that you would like to meet with one. When i was a nurse in the hospital, we met with the discharge planners every day to develop a workable plan. Having your input makes the whole process go smoother. This can all seem like too much and be overwhelming. And it is. But, remember, you want to maintain some control and do what’s best for your husband.
These 2 sites may give you some hints and ideas on what to look for:
https://www.nia.nih.gov/health/how-choose-nursing-home
https://www.aarp.org/caregiving/basics/info-2019/finding-a-nursing-home.html
May i ask your husbands age? How long has he had Lewy Body Dementia? Becky

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My heart just breaks for you and your family. LBD already comes with enough "curve balls" and now you have a totally new health problem added. I have absolutely no advice, but I just wanted you to know that we are thinking about you and praying for peace as you and yours go through the next few hours, days, and weeks.

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