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.
His family see him once every 2 or 3 months although they live close by.
I visited many Al's. I took advice from knowledgeable friends. I investigated meds and met with a psychiatric nurse for his depression and behaviors. I made sure that I liked the AL place and would like being with him there. I made the decisions. He did not want to go to AL. It was difficult. He thought I was abandoning him.
I have POA. This is my job. I also still love him even though he is not the same man I used to love.
With him in AL I can have respite in my own space at home. I can see friends and my granddaughter in my home. None of his friends come to see him in his AL. Some are unable for health reasons. Most just drifted away. He has me...I go everyday. And he has good staff who make connections with him for their tasks...dining wait staff. meds, room cleaning.
i am a young 76, still travelling and hiking. I would do more and more often and be more active in more activities but for the fact that I am emotionally tied to him. My decision. I manage my own emotions and help him with his as well.
You have to work this out for you in a way you can live with. It's not easy managing what you need balanced with what he will need as he continues to decline. Decline can be very fast or last many years. Get busy making good decisions before a crisis hits. It is good that you asked for help. Keep asking because the dementia progression changes over time. Take care to decide now what you and he will need next week or next year. And be flexible enough for a very bumpy ride. I send you lots of good wishes.
When he gets to an end stage of dementia, he will more than likely need a facility. Start your investigation now so that you have some idea of what you're going to do. For now you could try in home help.
Some argue most live life in quiet desperation.
Thats the Opening narrative of the 1963 episode called “A short drink from a certain fountain.”
Harmons wife was named Flora. She, too, was frustrated with him not taking her on a boat.
Flora, take your winnings from this marriage and go enjoy yourself in Antarctica.
If not, get this man you call husband the care he needs and be the advocate he deserves, as all people that have lost capacity deserve.
What you decide will be very telling about what kind of person you are.
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.
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.
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!
Yesterday, So, who works in a much higher rated facility, answered a smoke alarm call that ended up being caused by the elder’s agency caregiver. She set a standard blender on their stovetop, accidentally turned it on, and ended up crying and wailing while building maintenance cleared their unit.
Even after they go into care, you as family need to be accessible no matter what you’re paying. Not in Antarctica trying to save the whales or spending four months ecotripping on his earnings.
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.
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.
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.
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.
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.