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

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.

He’d be fine in AL, so go for it! Moving back to his hometown to be with his friends holds a built-in problem of continuing sorrow as they pass away one by one. As they each become older, their ability to sustain a friendship begins to fail. It drops back to an occasional phone call, which can happen at a distance rather than in the same town. Better for him to be in AL where they know how to care for him and provide activities.

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.

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.

Bepperboo, whenever there is a question like this, I ask "what if the roles were reversed"?

I have a friend who married a much younger woman, who he loved dearly, and one of his reasons was to have someone take care of him when he got older.

Well, that didn't play out. Unfortunately, the opposite happened, his wife is in Memory Care, and her husband who is in his 80's is still living at home, still able to get together with his buddies for lunch, etc.

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.

Moving him to MC will give him opportunuty to be mentally stimulated and entrtained. That is if you choose the right place and he is willing to follow the group and socialize. That takes the safety and entertaining burdon off of you. If you feel you have too much time on your hands, you can ease the grief and visit often. You can also ask the facility if they will allow him to go out on excursions but not away overnight

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.

If he wants to move, send him with full-time aids. Live your life and spend time with him once a month or so. Seems like an expensive option but if you can afford it that’s what I would do. As long as you find people you can trust and you can manage it seems like it would work.

I can understand your situation very well.
As relationship changes with disease, some people become closer in some ways, yet, there is need for separate lives to some extend, I believe it is a must.
My husband with Parkinson but no dementia, understands how I am totally very independent. He knows if this will last for long time, he needs to make arrangements, I don‘t want him to go to AL or whatever, but, he decided if needed he will.
In the meantime, all programs, respite care, additional relief are arranged for me, and he is fairly mobile and independent, possibility exist he could get Deep Brain Stimulation soon, which could reduce, reverse PD and we can enjoy good years.
It is still hard, for example, we went to wedding last weekend and left around 9pm, as he was tired, I could have stayed and socialize and dance till at least midnight or he knows very well I would pack today and travel the world.
It is those differences in lifestyle that are difficult to deal with, while nobody‘s fault and I understand his predicament, but lots of burden I have to carry as well.
Whatever you decide, your husband has no right to expect you to be with him all the time. Arrange as much help, programs, respite care, etc. I will soon travel and respite is available on weekly, monthly basis in AL, NH, I also have two agencies to cover and friend who would stay with my husband in my absence. So lots of possibilities to cover different scenarios, I also made detailed plan A & B, including
financial and personal aspects.
It is crucial for your own good to create as much time apart as well, I have no guilt, I say it all the time I did not create, contribute to this disease and should not sacrifice my own life.

If you can afford assisted living, try paying someone to help you out in the home with his care. It would give him socialization and you time to get out.

Keep in mind that AL is for people who can live in their own space with very minimal help from others. If he is requiring a lot of your time, he may not even qualify for AL. As far as facilities go, he may only be eligible for NH (memory unit) based on how much care and eyes-on he needs all day.

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.

I am in the same situation. My husband is a serious invalid. I am a still active person. I am going to move him into assisted living. Working on that right now. I am staying in our home. Why would you have to move with your husband? Frankly, for me, it will be a relief for someone else to care for my husband. He is extremely high maintenance. That is what assisted living is for. To pay someone else to do the caregiving. I will visit him every day and be his wife again, instead of the caregiver. I am looking forward to it. And by the way, even people who need a great deal of help can be in Assisted living. My husband is bed ridden and they will take him.

My mom lives in AL with dementia and I have a 1/2 day caregiver helping her 7 days a week. She is too aware to be in MC but she needs direction for meals and help with showers and someone to get her to events (which she enjoys once she gets there). There is a neighbor in her AL who lives with the dementia spouse. They are pretty young (60’s) but he chose to move in with her. He has a car and goes out knowing that she is well taken care of and he is a recipient of the prepared meals and laundry service and apartment cleaning. It was wonderful to see this. He has his wife safe and has ability to play golf, see friends. She is cared for and they are together. I told my husband this was a great option if either of us need more care. My husband agreed. We don’t know what our future holds but being with each other is our commitment AND from my experience being my mom’s advocate-I have found that AL/MC may have wonderful caregivers, they are all different in their interactions and consistency and routine is VERY important to a person with dementia. I wasted lots of money paying the facility for the extra care services and if they were short staffed or mom wasn’t ready for the care- it wasn’t done but they still took the money! She is evaluated by the facility and is in need of the extra services but they note that it is being taken care of by her daughter. Me, her daughter, hired private staff to give mom routine and consistency. There is a tax benefit so it was important to have the evaluation and documented need. I know I got off the topic a bit but having seen the success of a couple living in AL where one has dementia was wonderful to see and heartwarming to know that kind of lifelong commitment. (Side note: my mother in law had live in help with her husband and she stayed in their home with her husband. His dementia was ALZ and he and the caregiver slept in another room.)

I wish I had an answer! I am in the same boat (well, not literally, but...) I am 12 years younger, coming close to 40 years married to my now 88 year old husband. I kayak & hike locally, and make sure I get to a tropical vacation of SCUBA diving and swimming a couple of times a year, while my husband who walks with 2 canes, and has maybe middle level dementia, stays at home with a drop-by care taker. We live out in the middle of nowhere, where Uber doesn't cover. My husband still drives, but shouldn't, so doesn't get out much. He really needs to be around others, but is completely resistant to moving, says he like the solitude. If can convince him to move, it would need to be a place with services for him - and freedom of movement for me. What I seeing online is that such places don't exist, at least not in our price range.

When someone has dementia, often the wish to go "home" is symbolic. They want to go back to a time when they were independent and capable of doing things for themselves. But if some of his friends are living in assisted living, this might be a way to get him to agree to moving to assisted living. In general, it's best for a loved one to be in assisted living near you, so that you can visit often and oversee his care. Moves, changes of caregivers and changes of venue can be very stressful for older people, try to keep them at a minimum. Is bringing in-home aides to assist him an option, if you tell him that you need assistance and that you can't be with him full time? He has 2 basic options for his care: in-home aides (which can include some family caregiving) and living in an assisted living facility. Have a plan for the time when his care is too much for you to do alone. Much will depend on your finances. It sounds like you already need to plan for times when you will be away for extended periods. If he has dementia and is a "wanderer" he should probably have someone 24/7 to watch over him.

We live in a senior living place where the apartments for independent and assisted are the same. Only the aides that come into the apartment alter the situation for some. Some people use it like an apartment hotel. They travel, bop all over town, have guests to the apartment. If one needs assistance, the other can go about their life without much worrying about help, medical assistance, meals, etc. We have a 2 bedroom, there our 2000 square feet units. Cleaning, cooking, showering, really all these sorts of things can be managed, for a price, a large one actually. You could certainly continue to live on your boat, travel, etc. with the possibility of being with him as you wish. This doesn't alter the fact that you want to live in different places. But it is a possible solution.

Your Area Agency on Aging has information and resources to help you navigate this difficult transition. The purpose of AAA is to help seniors live safe and healthy lives in their homes (while they can, and still want to). This includes support for CAREGIVERS. Support can be as simple as completion of specific household projects (i.e. installation of safety bars in bathrooms, walking ramps, etc.) to in-home care for a few hours, a few days or every day each week - depending on your husband's needs. THIS CAN ALSO PROVIDE YOU WITH IMPORTANT RESPITE TIME so you are can rest assured that he is safe and cared for while you run errands, visit friends and take care of yourself so you can continue to care for him. Services can be fee-based, but if you qualify (or if you or he are Veterans) funding is available to offset costs! Contact your local Area Agency on Aging - they're located in every state and each office usually covers several counties, so there's probably one very close to you! Best wishes!

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.

First your husband will have to be evaluated by the facility to know if he can go to assisted living or if he is a candidate for memory care. If he goes into AL doesn’t mean he is going to be active. He can sit in his apartment all day if he wants.

If he is in memory care the staff get people up and going and focus on getting them to activities. Make sure you know there are activities going on in memory care as some places will just place people in front of the TV all day.

Good luck I hope it works out for the both of you.

Unfortunately, this is what happens when someone marries a person old enough to be their parent. You're still young but the remainder of your marriage will be more caretaker than a wife. I feel that too many people who marry someone so much older aren't looking ahead. Eventually the older man can't do as much and the wife is aggravated. 

That’s not to say such marriages are bad or mistakes. Just saying one needs to consider future issues like this.

As others have mentioned, you have a few options. One, hire aides and home help. Two, move with him into a retirement community. Three, place him in assisted living and visit as much as you need.

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.

There is one thing in Ops post that stands out, and that’s her insistence that she spend four months of a year on a boat. Is she an Alaskan fisherman? Or is this some Expensive ecotourism activity? She might as well file for the big d if she insists on playing around for four months.

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.

My husband is 20 years my senior as well. At 62 I completely understand the feeling of drowning as his caregiver. Please hold tight to your life. It’s ok to enjoy being a heathy 64 year old. The love and concern you have for him is clearly evident. It’s ok for your husband to take advantage of AL and you keep your home. He will have his needs met by professionals and you can visit often. Hugs to you.

Find assisted living in a continuing care community that also has a dementia wing or building. Act like you are moving into assisted living with him. Stay with him for a month or 2 in assisted living, then go on your boat for four months as usual. Then perhaps you stay on the boat longer, or travel somewhere else, or stay with friends, or go back to the house if you've kept it. You can still visit him sometimes and stay for the weekend, if it doesn't make him too agitated. He'll probably need memory care sooner than you think.

I think your husband's idea is the best for both of you! You should look at moving back to his hometown where he can be with friends and family. There is no need for either of you to move in assisted living. He can continue to stay in the home and you will have family and friends to help you there.

If your husband's need increase then you can look into having in-home care to assist. Do NOT move him into a nursing home EVER if you can help it. They are death traps. If you think he is depressed now, you haven't seen anything once they go into these places. The neglect and abuse is horrible.

Please take your husband's advice!

I think you need to start looking at facilities now with of course considerations to the financial side of the issue.

You might see that some of the options are not bad.

Start planning now. There could be POA, financial, doctor issues etc. Believe me it can be a huge mess. You need to get these issues resolved as promptly as possible so when you are ready there are no roadblocks to placement.

You both have different needs at this juncture: please see if you can get him placed in Assisted Living near you. Call the Care Advisor here or "A place for Mom."

A meeting with an Elder Law Attorney should enlighten you as to all the steps and strategies that you need to consider as you navigate your next stage.

Do not give up your life when you have a lot of life left to live. I cared for my husband w dementia and many health problems for 3.5 years. He’s in hospital waiting for long term care. I could not get any help from doctors, etc until they had to admit him for infection, them they observed my reality and were shocked at his behaviours. I’m now so exhausted I can barely move, don’t know how to help myself. We do not have to throw ourselves on the burning funeral pyre on the Ganges, it’s a ridiculous concept.