I have been married for 20 years and am 20 years younger than my husband. He has moderate dementia as well as depression . I feel like I’m drowning. I am a very young 64 year old and teach aerobics and yoga and live on a boat for 4 months a year. My husband needs more social stimulation and doesn’t have the ability or desire to go out and make new friends or get involved with volunteer opportunities. He actually may not be able to with the dementia. His attention span is very very short. I am his caregiver and he doesn’t want me to leave the house. He wants to move back to his hometown to be with his friends who are not already dead. Our lives are growing in two different directions and I love him but I don’t want to give up my life before I have to. I feel like I’m too young to go into an assisted living home both physically and mentally.
I am at a real crossroad in my life and need some direction.
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.
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.
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.
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.
You like guilt?
Here it is misplaced as she wants to do right by him without needing to join him in a care situation she is not ready to enlist. The life you try to guilt her into may very well leave her sad and even depressed. Not one solution is for all....open your heart.
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.
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.
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.
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.