55-year-old DH—early-onset Alzheimer’s
Hello!
I’m new to this space. Haven’t found the courage to think deeply about ALL of this until now. My husband is 55 and was recently diagnosed with early onset Alzheimer’s. He’s still working (but I’m nervous that his employment may not last, based on his day-to-day functioning).
We have three kids ages 21, 18, and 11.
When I let the reality of our situation sink in, I'm absolutely overwhelmed and I wind up in heaving sobs. Since my life is bananas and I have three kids to reassure and care for, a full-time job, an aging father, AND a husband who gets lost on simple errands, I cannot allow myself to break down in sobs or face the enormity of this shitshow very often. I generally compartmentalize and try to focus JUST on what is right in front of my face.
There’s so much to think about/plan for and I do not know where to begin. I am sort of glad to read these posts and realize I’m not alone…but also, that makes me feel sick.
This is the worst thing I can imagine for so many reasons.
I’m happy to have a community of wiser people to turn to.
Wizmo (from this forum) already reached out and advised me to find a disability lawyer, to protect us from potentially losing benefits in case my husband is terminated from his job (he works for a large university in our city.)
I contacted the Alzheimer’s Association today and my husband and I have agreed to tackle visits to lawyers and difficult conversations this week.
The fact that we’re in our 50s, with young-adult children and one young child AND with aging parents as well makes our situation, particularly complex and terrifying!
Is there anybody out there with circumstances like mine? I’m wondering how I will manage being a caregiver to my husband while also creating a healthy home for my youngest child who starts middle school next fall??!
Our oldest daughter is 21 and still lives at home. And our middle child is a senior in high school and is saving money to have a gap year traveling around Europe and Asia… He’s struggling deeply with the notion of leaving and missing out on valuable time with his dad.
This is breaking my heart.
molly
Comments
-
My dh and I were in our 50's, and had some kids still around, but our situation wasn't exactly the same. My suggestion to you is that you prioritize your young child as your top priority, followed closely by the other kids. Often we want to prioritize our spouse, which makes sense, but they won't remember or really benefit from it, while the kids need stability and the rock-solid understanding that someone is in their court. Try to let them have the experiences and make the mistakes of youth. Watch out for personality changes that sometimes come with dementia and protect the kids.
This is a frightfully expensive disease for anyone, but most particularly for younger people, as many resources are collected over a lifetime or are age-defined (senior services, social security, Medicare). For me the top priority, the day my dh took early retirement, was to file for disability. That sets up Social Security payments, lines him up for Medicare a year later, and can pay off any remaining student loans (a lifeline for us). Start thinking about placement much earlier than you think you need to, because when things change they tend to change suddenly and you should have a plan.
4 -
Oh my god. These are sobering things to contemplate…but I feel in my bones that it’s time for me to begin the process of acceptance and action. I’m sincerely grateful for your plainly spoken and thoughtful advice. I can hear that it comes from your lived experience . Thank you.
m
1 -
Also, another layer of all this is that, three months ago during the neurology appointment when DH was given a positive diagnosis, the neurologist told us that DH is a good candidate for the newly FDA-approved Alzheimer’s drug Leqembi. He explained that insurance companies were at that time in negotiations with the pharmaceutical companies to decide how much and who will pay. He was projecting that by spring or summer of 2024 It would be available.
After nearly 2 years of tests and doctors visits and so much fear, the news of this drug felt very hopeful.
Today, however, I read a NY Times article, which gives a fuller story. According to the article, the drug comes with some very scary risks, potentially a LOT out-of-pocket expense, and doesn’t even promise to alter the impact the of the disease very much. 🙁
I am curious if there is anybody on this forum who has heard about this drug (or others) and can offer any insight?
M
1 -
I worked for a university. Definitely contact an attorney soon. You don’t want him being separated and possibly losing his pension, plus you should be able to collect unemployment while you file for disability. Not losing income needs to be priority. I’m so sorry you are in thus situation.
2 -
Molly there arent many people on the forum who have used leqembi yet. A NYT article last week said that nationwide only 3000-4000 people are enrolled so far. Men fare better than women, but it is risky and difficult (iv infusions every two weeks). The logistics of that are daunting.
1 -
so Sorry Mollykazoo that you had to find this forum but you will be glad you did. It is all swirling now and eventually you will get your thoughts in order and begin to make/complete plans. Perhaps the 21 year old can take over some tasks and errands. I wouldn’t discourage the middle child from traveling. He can keep in touch through FaceTime . You have much to ponder and none of it is easy . Heartbreaking indeed. Love and hugs to you and your family
1 -
I never thought I'd day I'm lucky my wife got this dreaded illness at 76. To hear your story breaks my heart.i have no words as journey new for me. Keep the faith.
1 -
Molly my DH was 56 when he had to stop working due to cognitive issues, he really should have retired earlier but I couldn't convince him to do it until then. I would get right on getting your DH retired and on SSDI so he doesn't risk losing any benefits that may come with a regular retirement. If you DH is 55 or older and has a documented diagnosis of dementia he will qualify for SSDI. If they disapprove you the first round then appeal the decision even if you have to hire a lawyer that specializes in SSDI. We had to do that and he was approved during the appeal.
Get your legal documents updated ASAP. We just finalized a new set of legal documents. It took me longer than expected to get that done because I was in a lot of denial after his diagnosis in June 2022. Don't be me and wait to get this done. It will be a huge relief when that's accomplished.
Also, when you get the first two tasks complete start visiting assisted living/memory care facilities. DH has been hospitalized already and I was not sure he could come home. I now have a few places that will take him if the need arises. I am actually planning on looking at another place next week. What I have found though is given DH's age some programs are not available like our local adult day care will not accept anyone younger than 60 years old. I hired a caregiver manager to help me find programs and facilities that would accept someone as young as DH.
Sorry you are here and that your situation is so complex. We lost a close family member to ALZ and during their illness my DH started having cognitive issues. If they were still alive or we had kids at home I would have had to rethink my priorities because managing even one person with this disease is damn hard.
0 -
Thank you all for your compassionate and direct advice.
The costs are already mounting in my mind and making me very nervous. Question: if my husband is willing to take early retirement soon, can we avoid the cost of a disability lawyer since there would be no loss of his job by termination and we could therefore ensure he would receive his pension?
Our whole family is on HIS health insurance, currently, so I suppose that’s another complication…🫤
0 -
Molly, this is such a complicated issue, talking to a CELA is worth it. Some offer free initial consultations. Best to get it right the first time than try to avoid costs and then wish you'd done it. Many here can give you cost estimates, and if what you are quoted seems high, come here to compare.
0 -
Few times I used attorney the cost was completely worth it, mainly in doing the hard work of plowing through people / bureaucracy designed to deny/delay reasonable efforts by a normal person without representation.
Don’t just take voluntary early retirement. This should be all about medically necessary disability so you get all associated benefits. It could be the difference in triggering extra time on COBRA for health coverage for example. Another is if you have a pension plan with disability provision, it could allow accelerated benefits similar to SSDI, beginning payments upon leaving and not waiting until age 65. My wife had this type of pension as a former teacher and we missed out on the accelerated part because she left voluntarily before we had diagnosis or even suspected AD. She ended up getting 60% for “early” activation at age 58.
An experienced attorney will clue you in to all kinds of non-obvious benefits to take and pitfalls to avoid. You won’t get a second chance to fix some things if you missed them the first time.
1 -
It's never too early to plan ahead. If you DH is a veteran, tap into your local VA. They can be very helpful.
1 -
I'm just starting Leqembi. Let me know if you have any questions or there is anything I can help with.
SingingDogs or am I Dogs Singing??
0 -
Molly, when I was in high school, a lifetime ago, my best friend was given the opportunity to be an exchange student her last year in high school. Her father was very elderly. He encouraged her to go, and told her if he died while she was away, to stay and finish her experience. He gave her permission to go, knowing he probably wouldn’t make it. Your DH is still capable of doing this for his son. It can rid your son of the guilt, knowing he and his father made this decision together. Her father did die that year, and she stayed as they had discussed. She had no regrets, because she was able to say her goodbyes before she left.
1 -
don't even think of this for one minute (Im a lawyer and i hired a good disability lawyer}
you need social security disability NEED NEED NEED
1 -
It is very sad to read your post. My wife found out 2.5 years ago she has AlZ. Our daughter is 40 and lives near by with her husband. They are a great help. You have been given some good advice, but I will add to it. It is a MUST to go talk with an Eldercare Attorney, don't put it off. With young children and an ill husband your hands will be full. That being said, you have to take care of yourself. My wife 30 years ago was in a bad horse wreck and had a very bad head injury. Our daughter was only 11 years old. I sat her down and talked to her pretty much as you would an adult. She responded very well, was a great help. I would suggest that you learn a little bit about we all are facing and sit your children down and explain what you all are facing. I think it will be better for all of you if you do that. Good luck.
1 -
> @Crushed said:
> don't even think of this for one minute (Im a lawyer and i hired a good disability lawyer}
> you need social security disability NEED NEED NEED
> @Mollykazoo said:
> Hello!
> I’m new to this space. Haven’t found the courage to think deeply about ALL of this until now. My husband is 55 and was recently diagnosed with early onset Alzheimer’s. He’s still working (but I’m nervous that his employment may not last, based on his day-to-day functioning).
> We have three kids ages 21, 18, and 11.
> When I let the reality of our situation sink in, I'm absolutely overwhelmed and I wind up in heaving sobs. Since my life is bananas and I have three kids to reassure and care for, a full-time job, an aging father, AND a husband who gets lost on simple errands, I cannot allow myself to break down in sobs or face the enormity of this shitshow very often. I generally compartmentalize and try to focus JUST on what is right in front of my face.
> There’s so much to think about/plan for and I do not know where to begin. I am sort of glad to read these posts and realize I’m not alone…but also, that makes me feel sick.
> This is the worst thing I can imagine for so many reasons.
> I’m happy to have a community of wiser people to turn to.
> Wizmo (from this forum) already reached out and advised me to find a disability lawyer, to protect us from potentially losing benefits in case my husband is terminated from his job (he works for a large university in our city.)
> I contacted the Alzheimer’s Association today and my husband and I have agreed to tackle visits to lawyers and difficult conversations this week.
> The fact that we’re in our 50s, with young-adult children and one young child AND with aging parents as well makes our situation, particularly complex and terrifying!
> Is there anybody out there with circumstances like mine? I’m wondering how I will manage being a caregiver to my husband while also creating a healthy home for my youngest child who starts middle school next fall??!
> Our oldest daughter is 21 and still lives at home. And our middle child is a senior in high school and is saving money to have a gap year traveling around Europe and Asia… He’s struggling deeply with the notion of leaving and missing out on valuable time with his dad.
> This is breaking my heart.
> molly
Hello, this is my first ever post so apologize if I don’t do this correctly. We are in a very similar situation: DW recently diagnosed with early stage atypical Alz with Parkinsonism symptoms as well. One child 14 HS freshman. And my wife also works for a large University!
Don’t know where to start emotionally, but maybe will with practical advice: I’ve consulted employment lawyers and done a lot of research. Your husband probably (not certainly, but probably) has long term disability insurance as part of the job. Many of these are designed to be supplementary to social security disability. I concur strongly with the lawyer’s comment below: any discussion of his leaving his job should be had in terms of him invoking disability insurance and FMLA: it would be illegal for his employer to take an adverse employment action based on a medical reason and since he is over 40 he is in a protected class. These are probably the most important financial issues to work out right now. But hopefully you have heard similar advice fro pm your legal consults!1 -
This is something to discuss with the disability lawyer (they don't charge cash but take a portion of what is obtained.):
If a PWD is still working, he can take short term disability pending completion of medical and neurological testing. Usually, short term disability requires only a doctor's note. Then, after a diagnosis and completion of testing, long term disability can be applied for. This requires quite a lot of medical documentation and takes time. Since there already is a diagnosis of Alzheimer's Disease, he can apply for Compassionate Allowance which will fast track his application for SSDI.
Iris
1 -
Echoing what others have said about getting him into the SSDI process ASAP. If you can get that done before he loses his job due to performance, you may be eligible for other things thru his employer/state (PFML, Short and Long Term disability). We were going thru the process of diagnosis when my husband started having performance issues at work. We were able to get the diagnosis, and go on medical leave before termination. As a result he qualified for both short term and then long term disability, all told the diagnosis before termination was worth close to $250,000 dollars for us.1
-
Thank you all SINCERELY for this helpful information. I'm endlessly grateful. Honestly, I'm mostly overwhelmed at this point.
My husband and I met with someone in person at the Alzheimer's Association last week--helpful, but also it left us with more questions than answers. We have an appointment with a CELA in one week. Also, I met with a really excellent therapist myself, who specializes in support for caregivers.
I'm confused about a LOT right now, but a basic confusion I'm feeling is whether or not there's a difference between a Certified Elder Law Attorney and a Disability Attorney? If so, do we need BOTH?!
A few important facts:
My husband does work for a large university, however, he has only worked there for about 3 years. Previous to that, he had a job (with a private academic publishing company) for 14 years that he was laid-off from in 2021 (I am now starting to wonder if his diminished cognitive performance contributed to that lay-off). Because of this, the pension he's eligible for from the University is minimal compared to the 401k he contributed to from his previous 14-year job.
I've gathered from these comments that I can begin to get my husband in the SSDI pipeline EVEN while he's still employed...correct? I will check out the website today. I'm having my husband check the University HR portal to see if he currently has long term care insurance, but I suspect we did not opt for it when we had the chance to do so.
THANK YOU!
Molly
0 -
Another thought is that if he is with an employer with more than 50 employees, which his sounds like he is, and he's worked there at least a year then he qualifies for FMLA. FMLA would give him 12 weeks of unpaid leave. That might buy you some more time. It can be used all at once or intermittently. I believe the employer cannot terminate an employee while they are covered by FMLA (I'm sure someone will chime in if I got that wrong).
Also we had to hire both a CELA and two disability attorneys. One for DH's VA disability and one for SSDI.
1 -
My DH (70) was diagnosed with AD in January 2024. He has elected to try Leqembi. We start our journey on Wednesday.
1 -
Another option is for your husband to apply for Reasonable Accommodations with his job. Depending on how advanced his disease he may be able to perform his job with some accommodations. We did with my DH and it gave him some additional time. Depending on the environment at his job the accommodations may give him a little more time working and feeling like he is contributing. Once my DH had to retire, it was very difficult because he felt like he was not contributing to our household, and he felt he had no purpose. It was and is a still a difficult transition.
We did hire an elder law attorney and applied for SS disability. We are still working on the VA disability. That one is a little more difficult. But you cannot apply until he retires, and it took 5 months to process the application and get the first check. Fortunately, we had saved money knowing this would be the case.
1 -
Elder law specialists are experts in handling money
Disability law specialists are experts in getting you money yo are entitled to.
sort of the difference between an insurance claim lawyer and a construction lawyer when your house is damaged
I hired and needed both
1 -
My heart truly goes out to you and your family. I took another route with my DH when he was diagnosed in 2018. He did not have early onset, but all the same financial issues are the same. His neurologists are osteopaths, who I personally trust more than MD's nowadays. Their medical credentials seem more impressive to me. It was expected, based on his symptoms and genetic profile, that my DH would be in Stage 7 within 2-3 years. At the time he was coherent and responsive, but there were short term memory problems complicated by his dyslexia. With the approval and encouragement of his doctors, I searched the world for alternative treatments, supplements, protocols, etc. I looked into the Bredesen Protocol and while it sounded very promising, the expense of putting my husband in one of their facilities in another state was beyond our means. (They have since finished clinical trials and are claiming great success, even reversing the disease). So I searched modalities in Asia, Europe and the Middle East, and found some important products that had been studied, tested and published on PubMed, the government medical site. For the first 5 years I had him on 40 different supplements from all over the world. He maintained his mental status up until the end of year 5. His neurologists even adopted some of the products I had purchased overseas because they were surprised that he was maintaining so well. The one thing I wanted to do was to take him to EmCell in Kiev, Ukraine, the only fetal stem cell clinic in the world. I developed a friendship with the Hollywood producer who made 2 documentaries about this clinic and their success rate with a wide range of illnesses, including Alzheimer's. I had even arranged to travel to Kiev with this producer, but the war broke out. The clinic remained open but the method to get there was extremely dangerous (via train, then car on back roads). At that point my DH did not want to go through that. Our country does not offer any clinic with this type of stem cells, yet there are clinics who use different types of stem cells but if you do your research you find that they are not successful for Alzheimer's. You have a ton of options to consider for helping your husband maintain for as long as possible. Don't give in to what Western medicine claims about this disease. There is a big, wide world out there with many, often more sophisticated, options for your husband. Blessings to you!!
2 -
Can you elaborate on the genetic profile used? And how it was used to predict his rate of decline?
0 -
Molly, welcome to the forum. I'm so sorry you have this on your plate at such a young age. When you're raising children, trying to work and being responsible for everything is something many of us never had to deal with, but even so, the members can give you a lot of help, understanding and support. I don't have anything to add to the great replies you've received, but I will give you a couple of links that should be helpful throughout this journey. Members have many other links to share, but I thought these would be good for now.
1 -
Molly,
I'm so sorry that you and your family are going through this! It was nine years ago that my wife was diagnosed with AD the day after her 50th birthday. At the time our two kids were 20 and 13. She is now approaching her 59th birthday and has been in a care facility for 18 months at a cost of $8500/month, covered for approximately two more years by long-term care insurance. You have already gotten good advice about finances and legal matters, so I'll try to share a little of my experience with helping keep my family afloat.
I worked as a public school teacher for a year and a half after DW's diagnosis before I took FMLA and eventually took "early retirement" to care for her full-time. The combination of her disease and personality left no other viable option as she became paranoid and extremely resistant to outside help.
First, you have to put your children's interests above your husband's desire for privacy. I communicated with my then 13 y/o daughter's teachers and administrators which was very helpful. Unfortunately, my wife was extremely hesitant to share her diagnosis, so my daughter's having to keep this secret from her friends was problematic and robbed her of emotional support that she needed. Between university, internships and starting a career far from home, our son never lived at home after the diagnosis, except a few month stint at the beginning of the pandemic. I had lots of opportunities to nurture my daughter and to find resources and outlets to help her through high school and college. It was those early months of the pandemic that I realized that my son also needed a support system to discuss his mom's disease. As a stereotypical male, he claimed to take it in stride and have everything under control. But he was abusing alcohol to mask deep feelings created from his mom's condition. Thankfully it never negatively affected his career and it is under control now. So, focus on your youngest, but don't forget that your older kids need help too.
Second, add to the "difficult conversations" that you mentioned in your post. Don't put off the difficult conversations, because if you do it may be too late for him to have meaningful or trustworthy input. Things to consider: Funeral wishes (burial, cremation, other); in-home help and respite for you; expectations for fidelity if/when he becomes incapacitated (does he want you to be bound to "death do us part?"); steadfast markers to end driving and the use/ownership of firearms; the potential need for him to go to a care facility; and sharing his diagnosis. https://www.alz.org/help-support/i-have-alz/know-what-to-expect/sharing-your-diagnosis
Third, try to find joy when and where you can. Be as active and connected as much as possible. You'll know when to throttle back on various activities. No stage is necessarily easier or harder, but each stage presents new challenges. One of the biggest challenges is that you will become a single parent even while he's still living with you. You'll have to make decisions without his input and deal with all matters without the conversations and bond I'm sure you once shared. It's hard and it's heartbreaking.
Finally, review the stages of grief and expect to cycle through them several times in the upcoming years. They don't necessarily go in order, and you will find yourself going through them when you least expect it. Knowing and naming these emotions helps me cope.
I followed most of the advice I've given, but not all of it. My biggest mistake was allowing myself to become isolated because my wife resisted having anyone other than me care for her.
I'm sorry,
John
3 -
oh my gosh. Thank you, thank you John for this message. One of the most isolating things I have felt in these beginning stages, is the feeling that we are ALL alone in being so young AND having a young child. I am grateful for every single piece of wisdom you've shared from the path you've walked. My two oldest kids are struggling for sure and THANKFULLY, they both have therapists to help them process. My middle son is especially prone to being stoic and not complaining and I worry a lot that he won't allow himself to grieve properly.
To be honest, there is so much more difficulty about my situation than I previously mentioned. Our 21-year-old is on the autism spectrum, has severe anxiety/panic attacks and does not work. We do not know if she will ever live independently, but she has aspirations to LAUNCH into the world of adults, so perhaps. Because of all this, there isn't as much opportunity for me to lean on her as I might with a grown child who doesn't have these challenges. Despite all this, she does have the deep desire be be helpful, and will regularly volunteer to pick up her 11-year-old sister at school or make a grocery run.
One of my big fears is that I will be forced to retire early to care for my husband. I want very much to continue to support my family financially and I DO NOT look forward to being homebound and tied to my declining husband--but it's difficult to imagine how this will all unfold without my being at home all day to help him. I would love to figure out an arrangement that gives me freedom to continue working, but we are not wealthy, so paying for that much in-home care is probably not realistic.
I'm so grateful to you for sharing your story.
Molly
0 -
I am in a similar situation. I am 54. My husband with vascular brain damage and MCI is 74 (already retired). Our girls are aged 9 and 13. I work fulltime but have used FMLA to cut back without cutting my pay. My income is our primary income. DH contributes his social security and has 2-3 years left in his retirement account. He was getting so stressed out about where we were living (in a city neighborhood) that I moved our family to the suburbs. I bought a larger house to accommodate an au pair, because I knew I needed more help with the kids. She arrives next month. Gawd I hope she works out. I know I need to keep working until the girls are finished with college. I don't know how that plan will become complicated by DH's condition. My 13 year old has high anxiety, panic attacks, and at times cannot go to school. My younger daughter recently was diagnosed with ADHD and mild autism. I was focusing on trying to make things easier for my husband (maybe then he can calm down?) but I'm now getting the message that I need to prioritize the kids. And I need to do some legal stuff. I think it was still a good idea to move. I don't regret that yet. Is there a communication board for kids with parents with dementia?
2
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 479 Living With Alzheimer's or Dementia
- 241 I Am Living With Alzheimer's or Other Dementia
- 238 I Am Living With Younger Onset Alzheimer's
- 14.3K Supporting Someone Living with Dementia
- 5.2K I Am a Caregiver (General Topics)
- 6.9K Caring For a Spouse or Partner
- 1.9K Caring for a Parent
- 161 Caring Long Distance
- 109 Supporting Those Who Have Lost Someone
- 11 Discusiones en Español
- 2 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 9 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help