My wife was diagnosed at age 51 with Alzheimer's and symptoms existed for 3 to 4 years prior. I work full-time (from home) and am her primary caregiver. Many challenges.
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!
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."
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 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.
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.
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.
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.
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
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."
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.
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.
.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....
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