My husband needs assisted living in a community, but I’m not ready. Any advice?

Your DH needs Memory Care AL, not regular AL, and you do not belong living with him in a Memory Care environment. If he just needed regular Assisted Living, I'd give you a different answer, but Memory Care, no. A lucid younger wife has no business living with her older DH with moderate dementia in such a situation. Get him placed in Memory Care and go visit him often, that's my suggestion. We see this happening quite often lately here on the forum, and off the forum too.

In 2019/2020, I worked in a Memory Care ALF and saw MANY wives who had no other choice but to place their husband's in Memory Care with us. Husbands, too, who had wives with early onset Alzheimer's who became way too much to handle at home, so they had no other alternative but to place them in our care, too. So these spouses weren't about to move in WITH them, that's just out of the question. But they'd come to visit, some daily, with small gifts, a book, a cup of Starbucks, a Dairy Queen, and spend time with their spouse. Sometimes they'd go out for lunch (if the spouse was able to do so w/o having a meltdown about returning to the ALF afterward). Things worked out well (or as well as could be expected) for each of them. The spouse had his or her life in the Memory Care, and the other had their life at home. The lucid spouse did not abandon the other, but came to visit frequently. It all worked out in the end.

You being DHs caregiver now & him not wanting you to leave the house can reach the point of not being realistic pretty soon. Him wanting to move back to his hometown would mean he'd live alone? That's unrealistic too, and if he expects you to move with him & be his caretaker there, then again, you being in this role for very long becomes unrealistic as the disease advances & becomes too much for you.

I suggest you read this 33 page booklet ( a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”

https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4

You have to know what lies ahead with DH so educating yourself is a good idea. I am a believer in doing the research first and THEN making a decision when you are armed with all the facts.

Wishing you the best of luck with a difficult situation.

I'm going to be honest here and say it. You married a man 20 years older than you are, and now you can't handle the fact that he's…old? Did you not say "in sickness and in health"? It sounds like you're more concerned with your ability to do your youthful things than you are with his actual health and wellbeing. Your "lives are growing in two different directions…" Yes. He's dying, and you want to continue life as if he's not.

There are many options you have here. Hire an aide to be with him and engage with him. Bring him to adult day care so you can do your yoga and make new friends. But you married an older man and are now unhappy that he's cramping your style, and I feel really sorry for your husband.

I also have a similar situation, except that we are same age. Husbands illness began around age 60, and affected his cognitive and physical abilities. He aged 20 yrs in just a year or two, and appears to be in his late 80’s. I’m an active, physically fit person who enjoys hiking, gardening and being outdoors with my dogs and grandkids.
After caring for him at home for several years, and hiring part time caregivers to be with him while I worked half-time, it became impossible to find caregivers and he wasn’t safe at home alone. My health, physically and emotionally, was suffering as well. I knew something had to change, and after several discussions he was willing to move to an Independent Living apartment in a continuing care facility. He has managed well there for a year and a half. He has made friends he enjoys eating meals with, has transportation to his medical appointments and seems very content. He is about ready to need Assisted Living, where he can have more help with incontinence issues and when he has fallen.
Some people may try to make you feel guilty, but don’t accept that. You can take care of yourself and have good boundaries about how much you give to your spouse’s care.
We age differently, even at the same age. Many at the facility where my husband live, have thought I’m his daughter - when sadly he’s my age, just appears much older.
Take care of yourself.

No reason why he cannot go into AL and you live where you are. He seems to need to be with people more his own age where they have activities that he can participate in.

This is where a 20 year age difference can come into play. He is too old to do what you do, and you are too young to be in AL.

Please consider finding an adult day care program that he can attend during the week (Monday through Friday days). It might give you enough freedom and give him enough attention.

Dear Bepperboo -
I have a lot of empathy for you. My husband and I are also 20 years apart and I have faced very similar issues.

First, when you fall in love at an early age, you cannot anticipate nor can you be expected to understand what life will bring decades later. Just deal with the present, as you are doing.

If you feel like you're drowning, you are already nearing burnout. So, you are right to seek help. I have found that social workers are excellent sources of guidance. Medical doctors are good for medical issues, but you are facing things that include non-medical issues. For social worker-type guidance, you can contact your local Elder Services resource (in MA, they are regionally based). Or ask his PCP for a referral. VNA have good social workers; though, they come as part of a medical team that can do assessments of your husband in the home. You may or may not need the other assessments.

Adult day care is an excellent next step; try to find one that deals with dementia and has its own transportation service; otherwise, finding drivers will be up to you, and that may be difficult. Driving him yourself will cut into the time you are trying to free up. It will provide him the socialization and community he needs.

You may also want to start lining up regular help with your husband in your home, if you can find it. There is a shortage of home help resources right now, at least in Massachusetts, in large part due to the pandemic. I found a couple of wonderful people locally through informal means who I was able to use until caring for my husband at home became untenable.

If you haven't already, meet with an elder care attorney to protect your assets from eventual long-term care costs.

I hope this is helpful to you.

Don't move back to his hometown. He has dementia it will get worse not better. He will eventually need to be put in a facility.

And you need to be around a support system and where you have your life.

He can want the fantasy of moving back to his hometown to be with his not dead friends but I can bet he won't hang out with these octogenerians either due to his dementia.

I will assume here that money is no object or you would not be considering an Al. As said, maybe you can try a Daycare. They aren't cheap, about $100 a day but cheaper than an AL. Moms Adult care picked her up at 8am. Fed her breakfast and lunch. Showered her for me. She even got PT. (Seems a local Physical Therapist gives back. He bills Medicare but when the money runs out, he continues to offer PT)Then home by 3pm. Gave me time to get a nice shower, dress and then my DH and I would do something. I had her set up for 3x a wk. You may find a Daycare that is longer. Or, have an aide for when he comes home if your classes go to 5 or 6.

Dementia is an awful desease. Its hard caring for someone who has it. Its so unpredictable. I used to wonder how people could put a LO into LTC and not care for them in their homes. I found out how they could when I cared for my Mom who had Dementia. I was 65 when she came to live with me. Its a 24/7 job. Your on your toes all the time. You sit down and thats when they want something. Its like raising a toddler again. And it does not get better. Almost 2 yrs later I placed Mom. She did much better in an AL than at my house. You are caring for DH if u place him. You can visit and enjoy the time together.

Just make sure if u go this route to have your assets split. DHs split will go towards his care. When its gone, you can apply for Medicaid. You will keep the house, a car and have enough from your monthly income of SS and pension to live on.

Talk to an Elder Lawyer well versed in Medicaid before you place him.

I don't think there is a solution that fits everyone.
We each need to decide how to proceed that gives the one needing care and the carer
What they each need.
You have a right to live your life! It doesn't mean you care any less. He needs more help than one person can or should give.
Talk with the people at the agency on aging. Be direct and honest with your husband. Let him know you are willing to give him 1/3 of each day... 1/3 is for your being active and taking care of you. 1/3 is for rest and sleep. 1/3 spent with him.
Let him know you want to be wife not caregiver.
Do not let anyone here get to you with trying to place guilt.
Would you want him to give up all freedom become caregiver to you...get tired unhappy and depressed?
No. He is not entitled to your life in constant service! Make certain he has good care. Be with him much of day and week. Do enough so he sees you care. He may day sleep anyway! Taking care by finding good care is good for both of you. Acting his age in AL is not reasonable and cannot last without ducking the life out of you.
Do right by yourself while doing right by him.

Bepperboo: Your husband requires residence in a memory care facility. Naturally, YOU do not require residence in any managed care facility and can visit him in the memory care.