55-year-old DH—early-onset Alzheimer’s

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.

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

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.

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.

It's never too early to plan ahead. If you DH is a veteran, tap into your local VA. They can be very helpful.

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.

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.

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

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

Can you elaborate on the genetic profile used? And how it was used to predict his rate of decline?

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

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?