Is anyone dealing with a husband with early-onset Alzheimer's? I am completely lost and alone and looking for someone going through this too.

I am and I am just so stressed and overwhelmed with everything. My husband also is incontinent since a prostate surgery 1 1/2 years ago and now with Dementia it's just so overwhelming. I try to be patient with him but at times he just wears me out with not listening to me about things he can do to help himself. He has had Therapists helping with exercising here at home and he cooperates with them, but he just won't help himself with me helping him when they are not here. He needs to get up with his walker and move around more and get himself to the bathroom before he has an accident with his depends overflowing! I'm just at my witts end.
I want to be able to care for him at home, but Senior Services and any other agencies are happy to help if you have almost nothing and are on Medicare and or Medicaid, but if you own or have anything they say they can't really help much. It's just not fair!! I want to be able to have help to keep me from getting sick, myself!! I feel so alone!!

This is an old post

Yes

My late husband was diagnosed with frontotemporal degeneration at approximately age 56.5 years old. I took early retirement to care for him at home (I was almost two years older than him). That was OK for a while. But while attending an FTD support group (there were simultaneous activities for loved ones w/FTD), the facilitator said, "There's an excellent adult day care program at XYZ Methodist Church, but that's probably too far away for many of you." I said, "I can drive him there in about 10 minutes each way. Give me the information." I enrolled him for 3 days/week, 6 hours/day. When they told me he needed a more intensive level of care, I looked around and found another adult day care. I enrolled him for 3 6-hour days and 2 8-hour days each week. Both were lifelines to us until he needed full-time residential care in a nursing home. Some states, counties, or municipalities might have caregiver grants to defray some of the cost of adult day care; the VA used to have it for veterans (I don't know the requirements because he never served in the military). I highly recommend an adult day care center if one is available and affordable for you, The Alzheimer's Association might be able to help find a support group for you as well. They usually have care for the person w/the Alzheimer's diagnosis. Some of the support groups exist for spouses or children w/early-onset Alzheimer's or another form of dementia. God bless both of you in this challenging journey.

I was recently told that full-time nursing care can cost up to $14,000 per month. What's your experience with this?

Dementia by itself is awful and difficult and life altering. Early onset dementia is a special hell of its own. My mom retired from work at 58. We fought about it because I didn't understand what she was doing. She didn't have any money saved, she had very little equity in her home. After her and my dad divorced, she had to start all over with nothing. I was afraid she was going to get herself into a financial pickle retiring so early. She didn't have hobbies or friends to do things with, so I was very concerned that she would be bored, broke and have zero stimulation. All she would tell me was she was tired of working. It took years before she was diagnosed with dementia, but looking back on it, I think she was having issues at work and either didn't understand what was happening or she knew very well what was happening and thought quitting would help. By the time things were bad, like her getting lost driving or showing up at my front door really early in the morning while I was getting ready for work thinking we had plans, she had become pretty compliant when I suggested we all get a physical. I also requested that she have a simulated driving test during this physical which she failed miserably. When the doctor told her she shouldn't be driving, I sold her car and had to take on all of her tasks. Truthfully, I don't know what I would have done had she fought me on the issue. I guess I would have called adult protective services. I have friends whose husbands had Lewy Body Dementia and they were violent and putting themselves and their family in danger so they had to be placed in a facility.

I can tell you that you are not alone and I am so sorry that you are going through this. Your husbands temperament and the type of dementia he has will determine what your next steps will be. Visiting an elder lawyer to get everything in place and your power of attorney established is important if you haven't already done it. You are going to have your hands full and there will be days when you aren't sure you can handle it, but that is what sites like this are for. You can vent, you can ask questions, you can just read about others situations, ect. I find comfort in it and hopefully you will to.

Yes

Lisa - don't worry about him admitting he has dementia. It's probably not going to happen and it really doesn't matter. You know he has it, as do his children, and that's all that matters. If other people need to know, you can quietly pull them aside and tell them in confidence.

So sorry to hear ...I have been through this with my mom and mother in law and father in law.I have fear that I could be dealing with this with me or my husband as we are in our mid 60s.This is a great place to talk with others and I will hope youwill take some of the great advice given and share your feelings. I hope you will find support because it is so important.

There are so many going thru this. One place that can be helpful is to call the Alzheimer’s association. They have a 24/7 line. They were so very helpful to my sister and I in trying to help my bIL take care of my other sister. All of this long distance too. Go to www.alz.org. And click on menu. And you can go from there.

I don’t know where you are located but the Alzheimer’s Association can help you find recourses in your area.

there are support groups. Even some online. There are books. One very small book called “I Care” is excellent. We were given this book at a dementia group event. In our area we have something called a Memory Cafe for those with dementia and their caregiver. from 10-2 one day a week with music and pet therapy, crafts, lunch, and exercise for those with dementia while the care givers have their own time of support. Plus some other appropriate activities. There may be things just like this elsewhere. You could contact your local Office on Aging and they could tell you what is available.
you are not alone. There is much support out there for you. I pray you will find something that helps.

LisaMarieA: The horrible disease of Alzheimer's claimed my dear sister in law's life. You have come to the right place, the AgingCare forum where a ton of longtime posters should offer you support on the disease. You could garner knowledge on it by reading such publications as the book, 'The 36 Hour Day.'

I also highly recommend joining an in-person caregiver support group. You’ll gain so much useful resource information, and as importantly, gain much emotional support by realizing you are not alone in this journey.
Contact your Area Agency on Aging and the Adult Service Unit of your area Department Social Services(also called Human Services in some areas) and ask if they can advise you about local respite care programs, adult daycare, etc. You can find numbers for those agencies by contacting eldercare.gov.
The federal government has some very helpful, free printed info you can order online- search NIH-NIA Alzheimer’s/dementia. 3 excellent, large guides are:
caring for a Person with Alzheimer’s Disease
The Caregiver’s Handbook
Advance Care Planning.
They also gave some great tip sheets and pamphlets.
Get acquainted with Teepa Snow, a renown dementia expert/trainer with loads of free videos and information as well as paid training.
I agree with suggestions about lining up help sooner than later- to get him used to an alternate care provider and to give you a break. Don’t let his resistance or refusal stop you- he will get used to it over time.
Best of luck on your journey ahead- it may be very challenging, but tackling it a day, or an hire, at a time will help you survive.
Nancy A. in Virginia Beach

My husband was diagnosed at the age of 64 in 2017 with Frontotemporal Dementia and Mild (now Moderate) Cognitive Impairment. I had been documenting his behavior for five years prior to diagnosis and had plans in place to leave him. He was diagnosed one month before I was going to leave. The diagnosis changed my plans and gave me understanding of why he did the things he did. Some folks with dementia are compliant. My husband is not. For example, he is still sitting here three hours later furious that I did not bring him McNuggets for lunch from McDonald's (he asked me to bring him a double cheeseburger or a whopper when I left the house, so I bought both). He launched into a tirade about what a terrible memory I have and that I don't listen to him. Why would he ask for a double cheeseburger or whopper when he wanted McNuggets? (Yep, I went to McD and BK in hopes of keeping the peace.) And on it went. I keep silent (because reacting is a big trigger, so no reacting) and just let him rage. If I become unsafe, I have exit strategies, plus our son lives here. He picked up on what was happening and sat in the living room for a bit. That's just one snippet of my daily life.

What I have learned is this: You cannot reason with a broken brain.

If you try, all you will do is fight. It isn't worth it.

We got 18-20 years with Mom. I think Dad travelled with Mom for the first 5-6 years.

You’ve come to the right place. So many of us dealing with similar circumstances. My mom has late onset.

Absolutely I am in the same Position & it can be a daunting task. Keep abreast of any & all info available. Contact A place for Mom as it includes husbands as well. Check with all available facilities in your area as you don’t know what the future holds. Keep as normal a home life as you can. Practice patience, patience, patience! Keep in touch with your Primary Care Physician & discuss the medications which possibly slow the disease’s progression. If your husband gets anxious also look at the possibility of a calming medication. Carry on conversations despite the fact that he won’t recall them. Keep a sense of humor & try to laugh as much as you can. Let him be as independent as he is capable. Keep socializing. Good friends will be helpful & understanding. Keep him physically active. Hope this helps!

My name is Kim and my husband was diagnosed with Neurogenic Cognitive Decline when he was 55 years old. He had the symptoms many years prior to dx. He needs cues and supervision for most of his daily activities. He is still walking and he is able to use the bathroom on his own. He hasn't held a job or driven for 2 years. He is pleasantly confused, and I am thankful fir that. It has been quite the journey for both of us. Lots of ups and downs, but mostly downs. If you would like to correspond with me send me a private message for my email.

Hi Lisa, when you say early onset Alzheimer’s, do you mean age wise or do you mean is in the first stage? I only ask this question because my husband who is 82 is in the beginning stages of Alzheimer’s. He was diagnosed in July officially and as I describe it, my life is a little bit in limbo right now. He also has a comorbidity of COPD, so that limits his mobility. He is still able to read the newspaper would be left alone while I golf he does not eagerly take care of his personal hygiene. I think that has more to do with it. The COPD, a showering does create issues with his tubing as he is on oxygen 24 seven. I am currently in a support group is taking me three of them to find one that I’m comfortable with it. I’m comfortable with a facilitator, which is why I have chosen to stay in this particular one through them. I am learning that it is better to bring in assistance earlier, even if it’s not needed. My struggle now is to convince my husband that he is not having a what he described as a babysitter. While he certainly is not anywhere near the wandering stage. He does like to to prepare his own lunch or even thinks about it so I would like to have that person here when I’m not so that he will eat. I’m also going to have to move in the direction of getting someone else to help him with his shower while I am doing it. It is somewhat challenging. I would encourage you to join a support group or find someone that you’re close enough to to talk about this as I was quite surprised or comforted I should say when I begin speaking to others in a similar situation, and having them describe the behavior of their loved one with this even early onset stage of the dementia. It validates that it is, indeed the dementia, even though you have an official diagnosis, but it also Helpful do you know that what your loved one is experiencing is unfortunately part of the process. my husband and I are still able to have a good conversation about current events about our family enjoys having family visits. He is anxious when we go out in crowds so I try to limit that but I do enjoy getting out for dinner and he knows that is aware of it, and he is trying his best to enjoy that experience as well.
While there a lot of similarities in this disease each person brings their own life experience to it as well. I wish for you the best, and to find the best resources for YOU and for your husband. Although it’s only been a part of my life for a little less than a year, it is a roller coaster, and sometimes when we are sitting watching television together it is hard for me to believe that he is on this journey or should I say we. Thanks to all read this and to all of you going through this. I hope you find the support that you’re looking for.

My husbands dementia is starting to progress. Although, we just found out he has severe sleep apnea. It’s a possibility that this is feeding into the progression of it. He stopped breathing 208 times within a 2 hour period. You may want to have your husband do a sleep session to see if he has sleep apnea. I felt he had it but I didn’t know it was that severe. Lack of oxygen to the brain can play a huge roll in their condition.

LisaMarie, My husband was diagnosed at 67. He is 74 this month. He still manages his own hygiene and dressing, toileting, eating. This level of independence is helpful but leads him to believe sometimes that he is ok on his own. I manage everything else to make it possible for him to enjoy independent functioning in a supportive, safe environment. It can be overwhelming at times. However, I also feel some pride and satisfaction in managing all that I do, which makes it possible for him to be at home. This is a feeling I did not expect. I was angry and resentful for quite a while. I was living with his alzheimers for years (before diagnosis) and did not know that was a primary cause of his indifference to my wants and needs.

I want to echo advice from another forum member for you to begin ASAP getting him (and you) accustomed to having others provide direct care for him. I have found it to be a difficult adjustment. My husband defaults to relying on me and after 48 years I automatically respond. For me, I get out of the house at least twice a week and leave husband and caregivers to work on their relationship. If i have nothing else scheduled, I will go to the library and read or get a latte and walk in our urban park nearby. It is a lifesaver, I think, for all involved.

This may be a very long journey for you. Please take care of yourself. Do you two have children? If yes, I strongly encourage you to involve them. Keep them abreast of what is happening. If something should happen to prevent you from administering his care, they should be aware of details in order to be able to step up. One of our sons has actually expressed gratitude for the opportunity to be informed and to assist. If no children, think about who could step in for you and keep that person informed.

I am not currently in a local support group but I am trying a new one next month. I am in a book club that I have been with for 15 years. Also, I am in a dream interpretation group. (I am a retired therapist.) One of my friends in the Dream group recently lost her husband after 18 years with dementia. Her friendship has been priceless.

I share all of these extraneous details of my life because I hope you will continue to live your life. It will not be as expected but then life never turns out as planned. I wish for you peace and wisdom in your choices.

My father passed from Alzheimer’s after a very long journey. I started volunteering with the Alzheimer’s Association and it has been very therapeutic for my healing. It is a wonderful community and very supportive. I suggest you get in touch with your local chapter, they have many resources for caregiver support and education. Start at www.alz.org

My wife (75) is also has Alzheimer's and I am her caregiver. I have found
that getting the right meds to keep anxiety down is essential. Your neurologist
may be able to arrange in house visits to help out. The Alzheimer's Assoc. has outings at the Botanical Gardens for Caregivers and patients. 210-822-6449.
You can call me anytime. Mike 817-907-0161. Best Wishes,

There is not much that I can add here that others have not said.

But I needed to tell you, how sad I am for anyone that is going or has gone through this.

At an older age it's expected, and more expected every year they get older.

But someone young, just seems so darn unfair.

Get help you need, and vent here anytime.

Keep us posted, I'd like to here more of your story, and it will educate others.

Lisa,

An elder care attorney specializes in legal matters affecting older adults, such as estate planning, long term care planning, guardianship, Medicare/Medicaid issues, and elder abuse cases. To find one, you can start by asking for referrals from friends, family, or professionals like financial advisors or healthcare providers. You can also search online directories or contact your local bar association for recommendations.

Good discussion board here: https://alzconnected.org/categories/spouses-or-partners

Yes I am

Lisa, I am so sorry that your family is facing this awful diagnosis. May The Lord give you courage, wisdom and strength for this difficult time.

We had a poster that was diagnosed with early onset, John was 57 years old, he came here to tell us what he and his family were doing in the lead up to him no longer being "there".

1st off, he put ALL assets in his wife's name alone. This was to ensure her welfare later.

2nd, he asked his family to put him in a facility at least 100 miles from their home. He didn't want them to forgo their lives to visit him all the time when he no longer knew who they were.

3rd, he and his wife decided to do some dream vacations while he was still able to be with her and both enjoy the journey.

4th, they did the research, changed diets and added supplements to counter the brains deterioration. Did it help? Who knows but, I know being productive is definitely beneficial and that was accomplished.

He did everything he could, as long as he could. His family kept a close eye on him to ensure he wasn't in any danger or causing potential danger. He accepted his diagnosis and he was an active participant in his care. I think it is the best one could hope for with this type of diagnosis.

I have not seen John on the forum for a long time, so I assume his journey has changed at this point, he is probably to far advanced to even remember this forum but, I really appreciate the advice and him sharing his journey with us.

Remember, you matter too. You and dear hubby need to face and deal with the fact that his life and yours will not be what you planned. You need to get the legal aspects dealt with sooner than later. You need a good certified elder law attorney to guide you through your specific situation. You do not want to find out to late that you guys could have protected you from the expense of this disease.

Great big warm hugs! I can not imagine how hard all of this is for you.

My husband is 94 (I'm 87), so what we are experiencing--Alzheimer's or some other form of dementia--could hardly be viewed as "early onset". He is still functional as to ADLs but has lost some ability to deal with IADLs (executive function, planning). He currently has insight and recognizes that his short-term memory is not what it used to be. He will occasionally lose track of what day it is, dates, times, etc., or how many times he has told the same story or made the same comment. We have been fortunate so far.

We have not sought a formal diagnosis. At our ages I am unsure that there would be anything to be gained by a formal diagnosis. Our situation is quite different from that of OP since there's a significant age difference. We are both experiencing the physical debilitation that comes with old-old age, although I think he's in better shape than I am. (I need a new spine--yeah, good luck with that!)

There is a LOT of VERY useful information on this website, and I will be using it as our situation evolves. I hope that OP will find it useful as well.

Contact the Alzheimers association I see they are Having a Multitude of educational courses available .

Alz.org is a wonderful website with lots of support and an 800 phone number to talk to people there with questions. They also have a forum like Agingcare dedicated to AD.

https://www.thehickman.org/in-person-dementia-caregiver-support-group/

Above is a link to an in person Alzheimer's support group that meets the second Tues of every month in West Chester, PA. Call the number to double check.

https://www.alz.org/pa

Above is a link to the Alzheimer's association website for the greater PA area.

https://www.amazon.com/Living-Labyrinth-Personal-Journey-Alzheimers-ebook/dp/B005FY6QKO/ref=sr_1_1?crid=DDXTQR9LVEV1&dib=eyJ2IjoiMSJ9.LkIkcv9xwPxTEZHBnIGkwlMe3juH-zJCt9HkqPi1KvDrK4G4L3xMG7O2WlFTIcWPSQ286Bmg92B2s5HYT8ZOncEvQfsdQd2rBGfP6xAfQVaHi-8yoG9SBnCdosjbieQegYadX8v-_Zugo9_v5Z8d_Ml6_o5aRXUbnygkI6jgfHFN5BVvxYlu9jea5nSR0XVzVnj3fleKu7rzXV3jJ0_bOJC7g4XLw7GMUnbCBo_T23o.tYMQaKmeDjj7vj6OM9Jf2V7qoY236HCiV2R8-JIYU1k&dib_tag=se&keywords=alzheimer%27s+autobiography&qid=1714424417&sprefix=alzheimers+autobiography%2Caps%2C337&sr=8-1

Above is a link to a fascinating autobiography of an Alzheimer's sufferer, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's.

"Living In The Labyrinth is the story of how one woman found the strength and the courage to cope with a devastating disease that has afflicted five million Americans. Far from being an exercise in self-pity or a standard autobiography, this is an unflinching and ultimately uplifting look at a debilitating illness from the inside out. 
 
“Somewhere there is that ever-present reminder list of what I am supposed to do today. But I cannot find it. I attempt to do the laundry and find myself outside, in my backyard, holding soiled clothes. How did I get here? How do I get back?”
 
Only forty-five when she first began to struggle with the memory lapses and disorientation that signal the onset of Alzheimer’s, Diana Friel McGowin has written a courageous, stirring insider’s story of the disease that is now the fourth leading killer of American adults.

Diana’s personal journey through days of darkness and light, fear and hope gives us new insight into a devastating illness and the plight of its victims, complete with a list of early warning signs, medical background, and resources for further information. But Diana’s story goes far beyond a recounting of a terrifying disease. It portrays a marriage struggling to survive, a family hurt beyond words, and a woman whose humor and intelligence triumph over setbacks and loss to show us the best of what being human is."

Understanding the Dementia Experience: Thoughtful Dementia Care by Jennifer Ghent-Fuller on Amazon is another great book written in plain English.

https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/1480007579/ref=tmm_pap_swatch_0?_encoding=UTF8&dib_tag=se&dib=eyJ2IjoiMSJ9.aFJiwHMacJpUiYlb3LLUgU6crjjEPIt-OA4CmNDIj8QLDY1qSF71632QVN1b6yVlQavu0wNyuBNOAX6rhoL9gULgOOEsVcY16wjLzR1eqnuV5RLDQDvvho9HQL4oU08XOCUTKTsMOTdAt0BOQlPvaatw7wPEHD7JYJHEepgMrf5pX52pUm6BkysfajbIrUVFrJDdwwjcEKh9cy2-At04btGIUDInbuFEh9gzdG46p7M.e8vrFMCOFvafGrP-WAItj6ygT1rqzrpTfCh-MsSaeY8&qid=1714424689&sr=8-6

Stay connected to us here because we've been down this road MANY of us and can relate.

Best of luck to you.