Primary caregiver's spouse has early-onset Alzheimer's. Is anyone in a similar situation?

I took care of my husband at home, while I worked from home. In his case it was not early-onset. He was diagnosed at age 76. But it is a huge challenge to care for a spouse with dementia in any circumstances. I had the advantage, as you do, of relative youth. It takes a LOT of energy to work and to care for an adult, and typically we have more energy when we are younger. Like you I had the disadvantage of still being in my own career, and needing to continue that to support us.

Early-onset dementia seems particularly cruel to me.

But whenever the dementia comes on, it does indeed present many challenges to the spouse.

Feel free to post about particular challenges and enter into a dialog with the many caregivers here who are dealing with dementia. Even when our situations are not exactly like yours, you've found a place where people understand and care.

Dear Tommck,
I'm so sorry for your situation. I wrote a book titled "The Gene Guillotine: An Early-Onset Alzheimer's Memoir." It is available on Amazon. It is about my own mother who began symptoms at age 48. It is an honest portrayal of slowly losing a loved one, the challenges my family faced, and the steps we took to mitigate the ongoing issues that surfaced as the disease progressed.
My biggest advice is to take care of yourself. Caregivers need support.
Wishing you peace for this journey.
Sincerely, Kate

Yes, although in my case it is my husband who was diagnosed last year at age 56, I am 51. I believe the problems existed for about 3 years prior. I am going to school online to widen my skill set. I was a stay at home mom to three girls while my husband worked in a good field. He can no longer work or drive, so now it is up to me as we can't live on social security alone. My advice for you is to find a local support group to get involved in. I just went to my first one this week. Everyone is much older, but the stories are similar with care challenges. There are some great groups on facebook where I have found tremendous support. I really feel for you. I don't know how I am going to do this, but I love my husband and the vows were meaningful 32 years ago and more so now. Thinking of you!

I worked in the medical field for 30 plus years and with patients with this disease.Please find any local support groups and assistance within your county,
.There is allot of help available but no one is going to tell you unless you are aggressive and ask.I know this from personal experience and helping other families.
Don't be intimidated by anyone claiming budget cuts...stay on top of it...yes there are budget cuts but there are also grants to keep organizations going..had to deal with this myself..find help to let you take a break you need respite even if it is just for one hour a day...take care of yourself..that is a critical issue...you can't help your loved one if you are "burned out"...May God bless you and take care..hang in there....

Find a local support group through the Alzheimer's Association. While online support can help, in-person support by others dealing with the disease has more direct impact. The group I attend has a couple of spouses dealing with early onset.

Well it wasn't early onset. He was around 70 when I first noticed symptoms. He couldn't settle the checkbook which was his job since he was retired and I was still teaching. I am ten years younger. He was practically crying when I final took over in the summer. Then I noticed he had bounced about $2000.00 worth of checks. I knew something terrible was wrong at that point. Still it took the Doctor about 6 months to agree with me and prescribe Aricept! Now we are 8 years down the line and I retired two years ago because it was obvious that he needed me. He still doesn't get lost, and he still knows me, but I have to show him how to do every little thing. This morning he got confused with underwear, pants, socks etc. I had to show him what was first what's next. etc. I take him in the shower with me and make sure he is washing the right place at the right time. No telling where he would start without me. He had not washed his hair in months, put no soap on the washrag, barely got wet, etc. Now I know that he is washing and I tell him if he missed anything. It is difficult.. I work until 67 so I could get SSI, because my pension from teaching is minuscule. Not even enough for groceries for two weeks. So we are struggling with money, as well as daily activities. My children rare all far away so I get no help from them. I rely on my two best friends a lot, but I will have to get him into a caregivers day care so I can have some time away. I still take him to help with the groceries. He is physically strong and healthy, but his mind is gone. He does help me carry in groceries. Yesterday it snowed and I took him outside to help. He had a big floor broom. He ended up clearing off the grass!!! When he started pulling the snow back onto the driveway, I sent him inside! Live is crazy but I just keep loving the man I married even if he is a stranger.

My husband was 56 when he was diagnosed with Lewy Body Dementia. It took me 7 years to get him diagnosed (49, when noticed symptoms). Challenge in diagnosis was partly because of his age (last thing they expected) and partly because of the lack of knowledge about LBD, even though it is the 2nd most common dementia. It is very different than Alzheimer, effects the executive function NOT memory.

By the time it was diagnosed, it was severe enough for him to qualify for Social Security Disability. Luckily he had been a workaholic, so paid a lot into the system. That check plus a small pension, and living more frugually, has enabled us to survive. During the 7 years of trying to get a diagnosis, it was pretty rough. He couldn't keep a job and I had health issues, so we tried running our own business, which didn't work. Then I went back to work part-time, then to working from home, and now full-time caregiving. So, be prepared to adjust as needed.

We are finally old enough to withdraw from our retirement funds, without penalties, but my biggest worry was what happens to me. If I have to put him a facilities, it will clean us out. All the government assistance allowances are so low ($50K for Medicaid, and $80K for VA). Then what happens to me the next 20-30 years? An eldercare attorney helped put that worry to rest. Should have gone sooner.

Support groups are great, but I didn't like them in the beginning, because everyone was so much older and further along in the process, I didn't want to see my future. It was too depressing. But now, I'm one of them and find the support group very helpful. So, they may work for you now or maybe not, but keep them in your list of options.

Asking for help was the other major hurtle for me. Thought I could do it all, but what a load off, when you finally admit you can't. There are people and services out there to help, so ask. Again, sooner rather later. As my husband's doctor said, "This is a marathon not a sprint. Take care of yourself."

I went to an eldercare lawyer but seems all he wanted to do was charge me exorbitant rates which I couldn't afford! He waste to redo the will and DPOA papers for another $1000.00 which I couldn't afford the first time he did it and that was only 3 years ago. I said "NO." I really don't know what to do about finances. If I want to get Medicaid, I have to tell them about the last five years before I applied for it. What am I supposed to save? What kind of paperwork do they ask for and how can I save receipts and keep everything straight for 5 years?

Please don't be conned into thinking a drug like "Aricept" will do any good. It will not. There is no drugs as of now that will work to any degree with really helping people who are getting or already have Dementia of any kind. They will not work at all. Don't waste your money

I realize that it is not doing much but they say if you take the person off the med they will be even worse. I think he missed one night and he was terrible in the morning.
I don't know what to think! I just had to pay$400.00 for his first refill of Namenda. It was his deductible on the "new" and "Improved" insurance! I JUST LOVE OBAMACARE!…………….. NOT!

Yes, My husband was diagnosed this year at age 58 with FTD. (Frontal Temporal Lobe Dementia. I believe he has also had it for 2-3 years before the diagnosis. He is on Namibia and Aricept. I also supplement him with Gingko Bilbao. I do not work outside the home. I do also have a home-based business. So far, Rob has not deteriorated much. I know this will change. We are enjoying life as much as possible while he still is aware of what's going on around him. We went on a 14 night Caribbean cruise this past fall, and plan a 1 week vacation his Spring. He still enjoys gardening and planning his spring garden. I hope that you are able to similarly enjoy this time with your loved one.

My husband is 65 ad has had FTD for at least 6 years now. It certainly hasn't been easy since I'm still working full time. This week he was also diagnosed with ALS. I'm told only about 5 - 12% get both. Now I'm looking at even more difficult decisions. I have just contracted a "companion" to come in once a week while I'm at work. Perhaps this will take some of the guilt and burden off me - even for very short time. I'm not sure when and how quickly the ALS will progress, but thankfully for him he doesn't believe or understand it
Just wondering if anyone out there has had a dual diagnosis and how you learned to deal with it

You are right...there are many challenges in caring for spouse with early-onset Alzheimer's disease. There are more years of care as well as the need to adapt to different types of changes. There are changes in your relationship, communication, roles, expectations, and challenges of adapting to and dealing with the functional decline that comes with the disease. I am a 64-year old caring for my 78-year old husband almost 20 years, who has early-onset Alzheimers since age 58....not long after we married. But I wouldn't trade a moment of this experience, and I will tell you why... Caring for my husband has made me a better person...more caring, loving, giving, compassionate, empathetic, resourceful, and grateful. Although I'm far from perfect and some days are harder, I know that I am doing the best I can and that is enough. There is comfort and satisfaction in knowing that I am making a difference in the quality of life of my husband. I also chose to care for my husband at home. It has worked well for us over the years. I have utilized different support help in the past, such as a recreation program he attended a few mornings a week (adult day care, he thought it was a volunteer job), a home office where he could "go to work" every day, keeping a balance of activities around his interests and abilities, attending a support group when I could, calling a friend that would listen, and respite care when I needed it. Now we are exclusively using hospice services. . I would only say to you: one day at a time and care for yourself as you care for your wife. And God bless you for your caring commitment to your wife.

I see you are in New Jersey.As a NY native I can attest to the abundance of resources you have at your disposal.Do not back down in your quest.I know how people are back there ..keep "pounding" on "doors" and even contact your politicians.
I know your governor is in serious trouble right now but his office can still find the time to help you.My sister had to hire 3 lawyers and an accountant when our parents passed...the state was just awful but she kept "pounding away" and got through the mess.I know I know financial resources...there is help out there as I said earlier they are not going to tell you unless you keep asking.Contact AARP, there is a consumer guy on their staff ,name of Ron Burley..you can e-mail him or call the 1-800 number for AARP.Go through your yellow pages, white business pages...you can do this..we are behind you 200%..your state politicians staff are available, even Washington , contact the agencies and politicians there..I have been in your shoes both personally and professionally..do not give up, stay in the "ring punching"...take care

I empathize with the caregivers whose loved ones have fallen victim to dementia. My dear husband is 94 and was still chopping wood till last year when he had a TIA coupled with pneumonia and bladder infection. Since then his life has changed and also his diet. He has always had a sweet, loving personality and that remains with me though there are few people he recognizes. He also has hd several bouts in the hospital also for pneumonia and dehydration. Now I see to it the he hydrates each day and drinks his Ensure which is a blessing since he only eats pureed food and soft eggs now. I am his caregiver and I do not find it difficult to see to his needs because being elderly and retired, I am with him 24/7. I give him his baths and get his outfits ready for him. I am his constant caregiver and I am happy that I am so healthy at 88 to do so. His grandson and family live in an upstairs apartment and are very good to us and one of his sons lives practically across the street from us, so we are not bereft in emergencies if they arise. My husband also is very healthy but frail. This is the hard part. Knowing the inevitable outcome and fighting off the sadness of the prospect of him perhaps not knowing who I am. Nancy Reagan's book "The Long Goodbye" comes to mind. God help and bless all caregivers.

Excelon worked well for my husband in the beginning of his early onset Lewy Body Dementia. It made a huge difference, but then LBD and Alzeheimer are very different and some things work for one that don't work for the other. So VERY important to get the correct diagnosis. It's hard to say if Excelon is still working, because the dementia is progressing and who's to say he would be worse without it. I'm not willing to find out. It is very expensive, even just the copays on a good Medicare Advantage insurance. FYI - regardless of age, after 2 years on Social Security Disability, you have to go on Medicare. Anyway, we switched to the VA, so that saved us, but there are also discount programs through manufacturers that some may qualify for.

As for Namenda, we were told that it "slowed down the progression." Again, don't know for sure that it is working, but do know that 5 years in on a 2 to 7 years prognosis for LBD, he is maybe midway in the progression. So it seems to working for LBD. Again, a good reason to make sure you have the right diagnosis. If in doubt, go to lbda.org for more info about Lewy Body Dementia. They have some good checklists that help with diagnosis, and believe me, the doctors need help.

If you went to an eldercare attorney that didn't give you a good financial plan, then you had a crummy attorney. We went to one that said he could do eldercare and we met him through the Senior Information Center, but he had no clue what to do with an early onset situation. We live in a small town so the attorneys are really jacks of all trades and masters of none. So, I went on a website (naela.org) for attorneys who are certified in eldercare law that I learned about on this website. We had to drive 3 hours to Seattle, but it was worth it. The attorney I went to only does estate planning in regards to eldercare and disability.

wamnanealz, your story is so much like mine. This is my experience. My husband was 52 when he first started showing signs of something wrong. He started frequently using the same phrase and started having trouble following TV shows. He started depending more and more on a Palm device for reference to help him at work. He finally resigned as chief medical officer of his clinic and chief of section at the hospital.
A year later he was mistakenly diagnosed with early onset AD. I say mistakenly because they used memory tests that depended on a person understanding the instructions. His language was first affected and so he couldn't answer memory questions. I didn't know about the testing because he was embarrassed. This was a man with a B.S. in chemistry and a B.S. in biology, a M.S. in biochemistry, and an M.D. and wrote computer programs for medical practices that he sold nationwide.
He kept it secret, even though I knew something was wrong. He finally completely retired after admitting to me that he was now "stupid." That broke my heart to hear his defeat and embarrassment when he told me. His language continued to slowly deteriorate with more and more malapropisms.
He wasn't a danger to himself, he didn't wander, he continued programming and keeping the check book balanced. I continued teaching as I was just 5 years away from getting my retirement. He cleaned the house, repaired stuff, and took walks. He was still driving and would pick up the grandkids from school and daycare and to baseball practice. If you didn't try to talk to him, you wouldn't have know anything was wrong. He knew what time it was, what the date was, and had a better sense of direction than I did. We took a vacation to Arizona and he could navigate back to the hotel when I had no clue how to get back. And then the language took a nose-dive. He couldn't come up with ANY names of things and started using only pronouns although he still knew his numbers. He had been on Aricept and then Namenda and vitamin E. Didn't work at all. So, I suggested I go to the doctor with him this time. I explained everything about the numbers, the missing nouns, the ability to navigate. His neurologist got a look on his face and ordered another MRI and a PET. By this time it had been 3 years since the last one that hadn't shown anything remarkable. The new scans confirmed what the Dr. had suspected. It wasn't AD it was probably FTD, which often strikes people in their 40s and 50s.
I got by for about 4 years with hiring sitters that would just make sure he was safe in case of emergency. Then, I quit work 8 months short of retirement. He started having strange behavior changes and I decided I needed to be home. By that time, his language was down to just a few phrases that only I knew how to interpret. The strange thing was, that he still knew when it was time to get the grandkids and where they lived. He had quit driving by this time. If he was ever stopped, he wouldn't have been able to obey any orders or explain and would probably been arrested. He went through many different phases of behavior, many of them OCD like. Each behavior would stop just as suddenly as it had started--self-imposed diet restrictions, getting the mail and immediately throwing it away, stealing M&Ms at Wal-Mart, refusal to shower, taking daily walks in a particular pattern,etc. Five years ago, he started having mobility problems and I knew our stairs were a danger for him. Being a realist, I bought a fixer-upper single-story, hillside home on 1.9 acres and had it ADA remodeled for the day he was in a wheelchair and added walkways and a patio so he could enjoy the view.
It has been 11 years since he retired and he is now in a wheelchair and entirely dependent on me and a caregiver to bathe, dress, eat. He is completely incontinent. His right side is paralyzed and his left is starting to have problems also. He has swallowing problems and sometimes chokes on cold beverages. But the strange thing about all of this is he still recognizes all the family members and likes the dogs (2 Brussels griffons) to climb up in his lap. About 4 years into this disease, he started forgetting his old life, and what was happening was what always was. He loves to eat good food and watch shows with pretty girls and music. He seems to be content. I care for him like he is one of our children, with all my love. Someday soon I will probably come in and find he has passed in his sleep. This is not the retirement that we had saved for but this is my reality. And I'm ok with it.
P.S. During the last 3 years, my disabled sister (stroke, diabetic, RA) and her disabled husband (myotonic dystrophy) has lived with us. He died last May and she moved into her own apartment 2 months ago with their daughter. I love my sister, but am glad she's out. That was just too much.

I would hesitate to knock the meds entirely- they helped my mom for a while. Hopefully better meds will come along- but everybody is different and they may help some people.
All I can say is that watching my mom go away is the most painful thing I have every seen. I always thought I was a good and patient person- now I'm not so sure...

Yes about patience. I was a teacher for 43 years of primary and pre school children. I always said god made me a teacher to teach me patience. But those 43 years were only a warm up for now taking care of my husband. Some days I really lose it but I never raise my voice. I keep calm, because me losing it would only make him do the same and then I don't know what would happen.

My husband is developing fairly early onset I think. He is 73 and I am 57. The last couple years memory significantly decreased, trouble finding the right words, can't keep a train of thought, forgets very recent events. Dwells on the past - bad childhood. He admits he no longer is looking forward. I also believe some of it is a function of the drugs for multiple medical problems. I try to redirect behavior as much as possible, but not at a moment that is overly obvious. He had to take care of me recently - for about a 3 month period following my surgery. Quite an experience - I had to remind him to fix me breakfast, go to the store, take out trash, and a host of other tasks that either both of us or me alone typically perform. I knew I was having the surgery so I prepared about 2 months worth of entrees, muffins, bought canned foods, cereals, bars, and sometimes sent him to buy a meal to go. He is not as good a driver, so trips to the doctor and physical therapy were very stressful. My birthday is 12-27. Usually he is careful to acknowledge, but this year it totally escaped him until the first or second week of January. To add to all the physical health stress, he has only 2 years left in his lifetime savings. My plan was to sell our place at that point, take the equity and rent an apartment, and try to time everything with my turning age 60. This would give us about 2 years income. Then I would be 62 - hopefully able to draw a reduced Social Security to enable me to survive. Once on SS, I would apply for subsidized housing because 1/we will have 1)spent down ALL our resources 2)have no remaining real or personal property of any dollar value. Really, I'll care for him as long as I can. My biggest worry is being homeless after all this shakes out. He lost much of his savings during the crash several years ago, so it's not like he didn't try. He does understand he is not leaving me with any financial security and he kicks himself for this. Many places in our neighborhood are up for sale, don't sell, 2 are in foreclosure and I am SO fearful of what's in front of us when the day comes that we really can't afford to live here anymore. I've told him we just have to try to conserve for now - which he understands but does forget - requiring frequent reminders which do help for awhile. I don't know if your challenges are currently limited to the personal care issues, physical/mental health issues, or financial issues. I have a couple of friends who have some experience dealing with older family members who developed dementia. They are trying to gently guide me and will offer to help. While I don't want to prevail upon them, I'm being careful. I know I'll have to swallow some of my pride and let them do things I should really do. I think it's good you're thinking of these things now rather than later. If you do have family or friends willing/able to help keep them in the loop. It is better to swallow your pride than go through excessive stress by yourself. I've not gone to outside agencies, as I want to wait until it's crystal clear that I need the help. I want to be taken seriously when that day arrives. Blessings to all who care for loved ones during the ongoing phases of dementia.

I am at the end of this journey w/my 63 year old husband. He is down to about 50 lbs. I've been thru all the horrible stages of this disease & I wasn't enjoying any of it. He was my love & then I couldn't stand the sight of him. Now, I am so sad for what this disease did to him. I pray for his release from this misery & I hope we will meet again. Stay strong -- they really can't control their behavior. This disease will rob them of everything.

I want to send my heart-felt thoughts and prayers to you. It takes alot of unconditional love and commitment to be the spouse and caregiver for someone with Early Onset Alzheimer's Disease. My husband's disease started at age 58 with alot of symptoms that effected his personality, behavior, and functioning, and we were newlyweds when it all started. It was a difficult adjustment to say the least, but after I accepted that he was not going to be the way he was before, I began to be able to handle better with the ongoing changes and make good decisions about his care needs. After 20 years with the disease he passed away 5 months ago. I can only say though you have grief at the losses and no doubt are worried about future care, try to focus on today and what you can experience with what you still can share, at the same time not get attached to any level of his ability to function. Because one thing you can count on with this disease is change. Just cherish the times you have together. Looking back to all the years and experiences my husband and I had over the years of his EOAD and other dementias + strokes, I had over the years, though I had lost the companion I had, I had a new relationship, though different than what I was expecting. Lastly, I share with you two things that got me through the long-term caregiving: (1) have some part-time caregiving assistance, if you have elected to have him remain at home with you as his caregiver, whether that be in the form of part-time adult day care, in-home visits, or whatever resource that is available to you, and (2) seek out and accept support from others that will listen and accept your feelings. This helps relieve stress while giving you respite. One big mistake I made while caregiving the last couple of years (my husband was bed-bound for 7 years) was that I neglected my own health at times. Hoping you care for yourself as you care for your husband.