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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.

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Wnow. You have quite the range of responses and advice. Here's my experience which is ongoing. My partner of 24 years was first diagnosed with dementia in 2015. At first we could travel and hike together. Now, for just over a year he has been living in a really nice AL facility a very short drive from my house. I go everyday to be with him. I participate in exercise class, walking club, music, movies, tea time, indoor lawn games. He will not do the bingo, trivia, crossword type activities so I do not. I eat with him sometimes. We do puzzles together. I never before did puzzles. He is, so far, physically able to go out for short drives. I can go on my own trips without him. This does disrupt his daily routine however. It is emotionally difficult for both him and for me in different ways for me to go and when I return because he depends on me for stability and direction for his days. I know the staff. I know he is well cared for. His son has backup responsibility when I am gone.
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.
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you wouldn't have to go into assisted living with him. if he's in the moderate dementia phase you will need to place him soon enough, unless you can afford round-the-clock in-home carers. but you'd stay in your home. that is very common. one of the ladies in my mom's memory care has a healthy husband who visits her regularly there.
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You are living an active life and should be, but you are going to have to make some concessions for your husband who has dementia and will need care. I think your days of living on a boat are over while your husband is alive. This doesn't sound safe for someone with dementia. We are boaters and stay on our boat on weekends so I know what is involved. I am also in a situation where my husband is 13 yrs older than I am. We have been together for 30 yrs and I am noticing vast differences, so I get where you are coming from. When my husband is 84 I doubt we will still be doing what we're doing today. I am in no way suggesting that you move into a facility or stop your yoga and what not. You may have to sign him up for adult daycare several days a week so that you can have some freedom to stay active. Or you could have someone come in to stay with him on certain days. I agree with you that 64 is too young to move into a senior community and definitely too young for assisted living. But your husband needs care. I would have him assessed and then see what types of services you can bring into the home. If he has assets like a boat that is big enough to live on for half the year, you're more than likely going to have to sell it to have the funds to bring in care and take something off of your plate to have to manage. So I suppose my suggestion is to start downsizing some of your toys so that you have less to manage. Find out what services you can sign your husband up for. Maybe on the days you have yoga you can have a caregiver come in to help him bathe. Then you could slip out for your yoga without him pleading for you to stay. For me personally, I wouldn't agree to move to another area where you aren't going to be able to stay active. Maybe you can plan several trips for you and your husband to visit his friends. If his friends are elderly and dealing with their own health issues, trust me, there won't be much visiting goin on. Certainly not enough for him to move there.

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.
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Thoreau emphasized self-reliance, individuality, and questioned the basic assumptions of the way men lived.
Some argue most live life in quiet desperation.
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“Picture of an aging man who leads his life, as Thoreau said, 'in quiet desperation.' Because Harmon Gordon is enslaved by a love affair with a wife forty years his junior. …He pines away for the lost morning of his life when he should be enjoying the evening. In short, Mr. Harmon Gordon seeks a fountain of youth, and who's to say he won't find it? This happens to be the Twilight Zone.”

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.
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Does your husband live with you on that boat for 4 months?
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Dementia is a horrible progressive disease and educate yourself as much as possible. As short term memory loss progresses, the old memories become what is, in their mind, currently happening. My husband with dementia, was in the mid- nineties for awhile and now he's in the '80s. Ask your husband to describe how he sees life back in his hometown and what he and his friends will be doing. You might be surprised when what he describes is more like 50 years ago than current day. Have you given any thought to maybe taking a monthlong trip to his hometown? Rent an Airbnb and give him the chance to realize that it is not what he thought would be. Just a thought. It is a difficult journey.
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My dads thang left him when he needed a loving advocate most. She was only in the marriage for what she could get out of it. Is this why you married your husband?

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.
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Breezy23 Sep 2022
What a terrible response to someone asking for help. She is not a "Thang". Maybe that was your personal situation in life but not hers. If you can't be sympathetic don't respond.
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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.
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Y not moved back this way u can take time for u. He will have friends to visit keep him occupied while u do u. U can have help by going to get pampered. It’s only for awhile. I’m not following going back home is it an assisted living or r u just thing about not wanting to go in one with him. I wouldn’t. Friends can come visit .
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I thought I was reading my story! My wife +16 has dementia and is bed bound I’m 63 and ready to start my retirement career. Our retirement plans squashed but I have my own plans. I’m crossing my fingers she will not wipe me out financially I have a lot of living left to do. I take care of her and work on my property but rarely go out. Just waiting for the end of the story.
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CaroB123 Sep 2022
I absolutely understand what you're saying. My husband is 89 and I'm 74. I use my bicycle as my sanity-saver. After I get him in a settled situation where he's good for an hour alone, I ride like the wind. I also oil paint which I can do in the garage giving me a sense of separateness while still remaining available for his care. I have placed a baby-monitor in the house that I can hear in the garage.
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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.
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CaroB123 Sep 2022
You're so right. Pick yourself up after you've had a good rest.....then, get on with living. There's a wonderful world out there to see and experience.
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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.
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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.
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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!
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Maryjann Sep 2022
As a "very young" 64, it could still be traumatic for OP to move away from her own friends, family, and life. She is plugged in to her community, teaching, interacting, and living on a boat four months out of the year. Leaving that behind could be very difficult if done grudgingly
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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.
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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.
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PeggySue2020 Sep 2022
So JeanLouise, an Atria near me made international news late last month for feeding three of their residents an industrial chemical.

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.
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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.
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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.
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JeanLouise Sep 2022
Wow. Your response unkind and unnecessary.
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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.
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LittleOrchid Sep 2022
So right! In my case, my husband is actually younger than I. However, he has not remained active and now that we are in our early 70's he is aging much faster than I am. It is quite possible that something may yet happen that will make me require care before he does. Age is quite predictable--we all get there, but the effects on our bodies is totally unpredictable. We are living every year as a year unto itself. When we need to make a change in our living arrangements, we will. In the meantime we are enjoying our home together. No guilt if one of us needs residential care before the other. We have discussed it and informed our children of our decisions. Good luck to you and your husband.
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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.
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JeanLouise Sep 2022
We love who we love. My husband is 20 years older and we’ve been happily married 34 years. Yes, the chapter is extremely difficult but I would not trade our marriage for the world. She needs words of kindness.
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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.
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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.
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ckrestaurant1 Sep 2022
Confused here with also adding that he wants to move to his hometown?...Is this your husband who is 20 yrs older...if so this is a different discussion needing care for him which gives you some freedom...is either home care occasionally or move in to AS..which is so much better for the younger you..this assuming there is money which is available and selling the house to move is an added problem in that you may need to find another house..so you have multiple problems and never mentioning anything financial is confusing.
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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!
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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.
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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.
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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.
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Bepperboo Sep 2022
We are in the same boat! I too, love to scuba dive and have had to stop because husband doesn’t want me to go without me. I hate that you are secluded. We are both in a predicament
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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.)
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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.
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Lifejourney Sep 2022
Yes, being able to return to a husband & wife interaction is precious. I found that out, also, after I had to move my husband to a long-term care facility. I am now able to focus on him and have more relaxed conversations in a way I was not able to the last few years when I was consumed by being a caregiver.
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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.
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