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

Hi there. I’m sad to hear about your husband and also for sure how young he is. My brother has recently been diagnosed at 47 with dementia which they feel is Alzheimer’s. I do believe though that he has probably had it for three years. So very young. My dad had Young onset dementia at probably the age of 59. It is hereditary and it is supposed to be faster. But my dad live for nine years and he actually did quite well with it believe it or not. I know that that’s not the norm though but I was blessed to be able to take care of them the last two years and it was and it was good but that saying I do know that it is rough and difficult I know my brother is struggling with his symptoms. I do believe that there is not enough help or understanding for early onset dementia’s.
Being diagnosed with a onset of dementia under the age of 65 is a pretty big deal and it is usually hereditary and genetics play a factor in it. And it sucks because me and my sister could possibly get genetic testing done to see if we have the gene as well. I probably will but I don’t think she will. Anyways I hope things go good for you and that you can find some support on this website. Also is there anybody else in your husband’s family that has suffered from this?

What a kind and helpful post, @dadbrother2022. I think you may have been directing your comment to everyone, but specifically to @jen26. I've tagged her to make sure she sees it.

@dadbrother2022, getting genetic testing is a tough and personal decision. I can understand both your sister not wanting to get tested and your wanting to get tested. Have you decided to do it?

My husband is going thru the process of diagnosis now. When I read Susan Schneider William's account, it is a precise description of what my husband is going through. My husband is 51, I am 51, and we have two children, ages 15 and 12.

The significant challenges in the short term are:

1. Getting our legal, financial, and health care directives in order.
2. Choosing someone who can take guardianship of the kids if something happens to me.
3. Finding a neurologist who is experienced with young-onset LBD and coming up with a care plan that works.
4. We both are working still, though he probably will not be able to much longer. My husband is a computer systems engineer. He is also an accomplished musician who has over 50 copyrighted songs. Right now, we have a goal that he can play his guitar for at least 2 hours per week. I am a remote sensing scientist with a masters in chemistry. It is my goal to maintain employment until 57 when I can retire. I have to provide for my kids, and health insurance from my employer is a blessing.
5. Finding a competent and compassionate family therapist. Raising teenagers is hard enough. We are going to need help.

Thank you for your post. It is very different when you are young because all the focus seems directed toward elderly LBD patients. Its not easy for anyone, young or old. Hopefully there is a cure someday.

Welcome @cmiddlet.
51 years of age is just too young for any diagnosis in my opinion. @jen26 @dadbrother2022 @kellywilbanks @teacher502 @larryh123 and others know about an LBD diagnosis at age 50-ish first hand.

You sound like a very organized and structured person. That will serve you well. Am I right in assuming that's your comfort zone to be organized and helps you deal with the chaos of emotions you must be trying to manage?

How did you explain the news to your children? How are they dealing with it?

Hello, Jen! My husband was diagnosed with LBD at 68. However, I have heard of someone who was diagnosed with LBD at the age of 46. It seems difficult for people to get diagnosed with LBD at all, though the testing is much better now. The fact that you have a diagnosis is helpful. Staying organized and getting more information about LBD is very, very helpful. Take care of yourself too.

@jan83404 You're right! Taking care of the caregiver is so important. What tips can you pass along for taking care of the caregiver in this type of situation?

Would you care to give us an update, as to how your husband is doing these days?
Ginger

Caring for yourself is so important while being a caregiver to someone with a long, terminal illness. I am a neat-nic and have been since I was little. My level of neatness has been lowered and I have had to accept that I am not Wonder Woman. That has helped my stress level immensely. However, we have a friend from church who takes my husband to lunch nearly every Saturday. They then play "at" racquetball and have fun. So that gives me about 3 hours to myself. I also plan about 3 lunches each month. It may only be coffee with a friend, but I do need some interaction with someone who can complete a sentence! My husband's speech has become difficult to understand lately. His son comes up for a week in June and a week over Christmas. That's so helpful because his son can ease my stress and we can converse about my husband's abilities. It's nice to have someone validate what you see on a daily basis. I also find that having a project to do that doesn't necessarily have a specific deadline is helpful. I scrapbook and work word and jigsaw puzzles to keep my mind active. My husband is able to stay home alone for 2-4 hours at a time without trouble. I am grateful that he is pretty mild mannered. So, counting your blessings each day is a must. Wake up choosing joy every day!

Thanks for replying, Colleen. My name is Carrie. I've used the cmiddlet handle a long time. My husband and I have been married for 31 years. Our kids came later (they're 12 and 15). One advantage is since I've known my husband a long time, the changes are certainly more apparent to me. I learned through counseling that LBD patients can be very clever at hiding and I found myself in an enabling role to help him hide his many symptoms. Now that he is coming to hopefully understand and accept it, I hope it will make it somewhat more tolerable.

We have a very good family therapist who is helping the kids understand what's happening. It is hard to accept and the therapist has experience with LDB patients, too. The unpredictability and uncertainty is something she is working with all of us on. Building emotional resilience is what we are working on now.

One thing we are struggling with is how do deal with people who ask what is wrong with my husband. Some ask us if he has cancer or an injury or what. He doesn't want to tell anyone. That makes it hard, because there is a line between privacy and secrecy. Can anyone weigh in on how they deal with people asking what's wrong?

Hi, @cmiddlet I'm Scott and my MIL was diagnosed with LBD while my wife fought brain cancer, which gave her multiple dementia-like symptoms.

I fully recognize that each patient, their disease, journey, and caregiver are unique, I did want to share our experiences about your question about "what's wrong".

With my MIL, my FIL was in full denial and embarrassed to tell anyone at all for the first couple of years that anything was wrong with his wife. Interestingly when he finally did open up, every one of those folks said "oh, we always knew something was wrong" so they knew all along and he ended up not having some folks help, who were willing to.

With my wife, it was a bit different. She was intensely private about her disease, symptoms, etc. I think this was basically due to the significant number of family and friends who ghosted on us due to her impaired mental/emotional abilities. I gave her the privacy she wanted and left disclosure up to her but did tell a few friends what her situation was when they eventually
approached me and asked, always in private.

The only "situations" we had were early on when my wife was able to go out with us in public and some uncaring individuals would feel the need to comment about my wife, within earshot of her and our family. The first time this happened our son was with us and quite publicly ripped into the guilty party regarding their lack of courtesy (to put it mildly). Interestingly, after that when it happened again, she must have taken heart in our son's example and it was my wife who would rear back and unceremoniously and bluntly explain her situation.

Not sure if this is helpful or not, but wanted to share.

Strength, Courage, & Peace

@IndianaScott @cmiddlet I wanted to comment here, and please, if this is not the right spot, tell me.

What you are going through, have gone through, is something so many of us experience. The degree that you decide to disclose a health situation, is yours alone, whether it is to family, friends, or co-workers. There is simply no guessing how others might react, nor how considerate/inconsiderate they might be. From my own personal experiences, I am not the same person I was 5 years ago, neither physically nor mentally. I accept that. What is difficult is for others to point it out, in a desparaging manner. That will get my hackles up, and my response is not always pretty! I value my privacy, but do try to educate people when possible, and hope they will treat others in a more compassionate manner from then on.
Ginger