New to group - Early Onset Alzheimer's

This forum will be helpful; I do agree with Ed and there are others 

here that have more experience than I do.

Does your partner have grown children and are they the

down the road. Your positive attitude is great. There are 

definitely others here in the earlier stage as well. 

Hi Artemis, 

I am very new to the forum - just joined this evening!  My husband was diagnosed with early stage, early onset AD last December, at 65 years old, 4 years after a serious head injury. At the time of his accident he was at the top of his career, very active, playing a lot of music etc. He has needed to decrease his work to 1 day a week, he remains social with close friends, has hobbies he's engaged in, continues to play in a band etc. but the decline in the past year is undeniable and heartbreaking. We are currently on vacation - he's able to drive safely, participate in any plans I make but is beginning to need assistance in everyday living. He is finding word retrieval increasingly difficult and he feels more and more absent. 

Since his accident he has been taking supplements, varying them somewhat, watching his diet (off and on), exercises regularly. In the past 4 months he has gone through a series of HBOT treatments. I have contacted the stem cell institute in Panama and we are considering this option in the future. I am currently in touch with a clinic about embarking on the Breseden protocol. He will be starting IV infusions in January. I feel very much like we are on similar paths. I'm feeling urgent these days, about treatment. In the past he was in and out of "good times", enough so that we could almost keep our head in the sand a bit and think that what we were doing was enough. That has changed in the past couple months.

We're married, together for 36 years with 2 married children and a grandchild. We both had very successful careers and I remain working at 4 days weekly. I am needing to decrease this. My spouses needs are increasing and am I organizing/planning/implementing most everything and trying to remain patient and gracious in the face of so much uncertainty and grief. 

I am so encouraged to hear you say that all that you have done has made such a difference in the trajectory of your partners progression. It's inspiring. And I do understand that all of the choices we make for treatment are not proven but one thing is certain - the amyloid protein buildup is an end point not a cause of Alzheimers. I'm a physician. I have spent hundreds of hours on the pathophysiology, the science, the research etc. We're still in early stages of understanding this disease process. 

I understand your sorrow.

Although I am not new to this forum this is my very first post/comment. I am also dealing with a spouse with early onset Alzheimer's. I saw symptoms for years but he absolutely refused to see a doctor. He said it was "typical aging" memory loss. He finally went into see a neurologist at my insistence and had testing last March. This past summer after all testing was done he was diagnosed with Alzheimer's. He just turned 65 but I have been dealing with his memory loss and cognitive decline since he was in his 50s. He is still in the early stages  but I can see progression. 

4 1/2 years ago we moved away from a suburban area and away from our kids and grandkids to build a house up north in the woods and by a lake. This was before we knew he had Alzheimer's. This was our dream, to build this home in the country. It was our retirement home. now he doesn't seem to be able to get anything done in the yard or house. Every time I suggest hiring someone to do things he gets extremely angry. I think it's denial that he can no longer do these things on his own. Physically he is able, cognitively he's not able to put all the pieces together to get things done. I am angry all the time. I am resentful. I am sad and lonely because we are away from all of our friends and family. Even if we were to move back to the cities, there was no one there that would really be able to help us much for various reasons.

I would love to be able to connect with others dealing with EOAD. 

Just an added note… I do a lot of voice texting because it's quicker. Please ignore any typos, grammar errors, or weird punctuation.  

Hi Artemis35. I am also new to this group. My DW was recently diagnosed with probably Alzheimers dementia. She is 70 and I'm 74. We are both retired. She is very high functioning. We noticed memory issues early this year and a couple of behavioral incidents that caused us to seek medical intervention. It did take months to get a neuropsychological evaluation with a referral from a neurologist. However, we did get it last November. We did establish that the couple of behavioral incidents were probably due to an acute drop in blood sodium which has since been addressed. However, the memory issues are clearly evident, the neurologist has her on Aricept. As I said in the beginning, she is high functioning, having been a senior executive for many years prior to her retirement. Fortunately she accepts the diagnosis and we are working together to do a major update to our wills and POAs and agree on how to handle day-to-day finances. I maintain our shared digital calendar. She lets me do all the driving. I have always done all the cooking, so that was an easy one.

I have been doing a lot of reading about this disease to prepare myself as much as possible for what may come next. It's very important that you take care of yourself, physically, mentally and emotionally. The onset of this disease sent me into a deep depression, but I've been fortunate to have access to professional psychological help and it has been extremely helpful.

The other resource I have is that my mother died of AD, and my father, sister and I cared for her until the end which was about 7 years from the diagnosis. My father has since died, but I feel his spirit encouraging me, and my sister is a hospice nurse and a great source of information and encouragement for me as well.

Let's stay in touch in this forum. We are not walking this path alone.

Belldream,

Since your husband has Parkinson's in addition to dementia, have you reviewed the criteria for Lewy Body Dementia?  Its onset is typically 10 years earlier than AD.  You can find more about the diagnostic criteris on the Lewy Body Dementia website

https://www.lbda.org/wp-content/uploads/2017/09/2017_professional_brief_-_dlb_diagnostic_criteria_0.pdf

Also, you may be interested in an online forum for the spouses of Lewy Body Dementia and Parkinson's Dementia.  It is a moderated forum with membership criteria, but very active.

https://groups.io/g/LBDCaringSpouses

Hi Artemis35. My wife is 57 and has been diagnosed with EOAD in 2021, but I believe it's rather should've been 2017. This was the year when some friends would come to me and express their concern about my wife's fogetfullness. I made me to take her for a tour of every single doctor available including nuorologist. Nothing except "maybe a stress due to her special needs son who she needs to take care of". At that time we both worked fulltime. Make it short, her coming through one layoff, several unsuccessful employment engagement, we eventually had another neuro appt, a good cognitive test that resulted in the EOAD diagnosis. The speciaist who conducted the test was shocked of her very low score and was convinced that it was genetic. The DR prescribed her usuals for AD: memantin, donepezil, anti-depresants... she's been taking them for year and a half now. She's now on disability, not driving, not cooking (it's all me...), has difficulties with finding a right word... Why was it so fast? Sometimes I think that medications make it worse but afraid to take her off of them, too much risk... The DR though lost all interest in her and suggests appts twice a year... I'm 65 this year, our youngest daughter is a senior in high school and I'd still need to work a number of years to pay for the college and make some saving. How will I be able to make through this time, only G-d knows.How to help my wife? Sometimes I think that only G-d knows.  One thing is know - it does not make any sense to attack amyloids as they are the effect, not the cause. And NOBODY knows the cause of AD... And it's been frist diagnosed 100 years ago.

Thanks G-d for this forum, at least we have a place to share.

Hi there,

Oddly refreshing to hear of a similar story of the one I am living with my boyfriend. I invited you to connect. I am a newbie to this forum as well. 

Artemis35,

My husband was diagnosed with early onset disease at age 59.  He is now 70. I would be glad to give insight into our journey.  I know every patient is different, but progression of disease is definite. Periods of sanity, then we drop off another cliff of further cognitive decline. I am so sorry your family is on this train of dementia.  Reach out!  

Hi Everyone,

I have been a member since 2016 and my husband passed away in November of this year. His initial progression was slow but steady and it accelerated in the spring of this year. Ultimately he passed away from a heart attack. At that time he could not walk or talk and did not recognize me. He spent his days in a wheelchair. I declined transport to the ER because he was not a candidate for a heart cath and stents so he was kept comfortable until he died.

The things I had to learn over time are these:

1. Get all paperwork in order. Your spouse can no longer be your POA. Make sure wills are up to date.
2. If your spouse is having problems at work see an attorney and look at having him go on disability. Do not let him keep working if he is not able to. You don’t want him to get fired.
3. Make sure you have passwords to all accounts and try to gain control of all finances. Don’t let your spouse answer the phone. Telemarketers start out by saying “Can you hear me” because they want the person to say “yes” and they can use this to say you agreed to something that you did not.
4. if your spouse can’t manage dressing, simple tasks and other things he once did his brain can no longer handle driving. The last thing you want is him getting in an accident and injuring someone. If you wouldn’t let him drive alone with a young grandchild in the car that is another warning sign. They also begin to get lost in familiar places.

The problem with this disease is that the changes are often subtle and they sneak up on you. The person with the disease is often very good at covering up for what they don’t know. They smile and nod and are happy to let others carry on the conversations and it works for awhile because everyone loves a good listener.

Expect to be blindsided. My husband did the same walk 7 days a week for 10 years. One day a nice man brought him home and said he had seemed confused about where home was. The next day he did fine. The third day he got lost again and that was the last day he ever walked alone. Just when you have things figured out something happens. One day he stopped wanting to take showers and it was a battle going forward. One day he forgot that you only need one item of each clothing. He came out with 5 pair of socks on, three pair of jeans as well as underwear on the outside to finish the look. He was really never able to dress himself again.

My heart goes out to all of you wonderful caregivers. You are on an extremely difficult journey that will test your strength and your patience. You must remember that you did nothing to cause it and never feel guilty for being healthy and OK while your LO is not. It is just the way life goes. It is OK to ask for help and be specific because people want to help but don’t always know what you need. There may come a time when you can no longer care for your LO at home and that is not a failing on your part. You do the best you can and then you have to accept help from others. You will get through this and marvel what a strong person you are - stronger than you ever thought possible. Good luck.

This sounds so much like our situation. My husband is almost 66 and is in early stages. I am working part-time and he is trying to keep active with a part-time job, exercise, and interaction with others. My husband also has a positive attitude, which makes me so grateful. I could not do this if he was not positive. I am trying to focus on my mental health and reactions to him right now. It took some time to find a neurologist and so grateful to God for getting us into the neurologist and testing with neuropsychologist. My hubby is on medication, but I am not sure that it is working since I see signs daily. I am thinking that maybe the signs were already there, but I did not recognize them. Who knows. I suggest that you find a therapist that could assist you in addressing any barriers. I realize that I focus inward and analyze myself so much and am trying to learn to give myself some grace, recognize the stress, and find ways to calm myself. We are hoping to find some clinical trials as well to not only possibly help him but to help others.

I think maybe you would get more response if you started a new thread rather than posting on one that someone else started. I am new here also and it can be a bit confusing but we all are learning.