My husband has FTD, and more and more stays in bed all day, not showering, or moving at all. He has pain and struggles even with his walker. Any advice?

I'm sorry you and your DH are dealing with this type of dementia, which can be truly difficult in every possible way. You may wind up having no other choice but to place him in either Memory Care Assisted Living or Skilled Nursing if he becomes immobile, as dementia patients sometimes do. They can often become non-compliant with PT and OT as well, unfortunately, as they continue their downward decline. Since dementia is a terminal disease, you have to take a realistic outlook on care options for him moving forward, realizing his options for rehabilitation are severely limited. Things only get worse with dementia, never better.

Confer with DH's doctor to see what the timeline looks like, and when placement sounds like the best idea. If/when you are unable to move him from the bed to the toilet, or if/when he loses his ability to swallow, then you will have no other choice but to place him. Look into facility options now, and Medicaid if necessary. You can talk to a Certified Elder Care attorney about your financial situation and how not to leave you impoverished if placement becomes necessary.

Again, I am so sorry you are in this position to begin with, and hope that God guides you to the best options moving forward.

The longer that he stays in bed the weaker he will get, and then soon he will be bedridden. Are you prepared physically and emotionally to care for him at home if that's how he ends up?
You may want to start now looking into the appropriate facility for him, so you will have your ducks in a row, if and when the time comes.
This is very difficult I know, and sadly there is no happy ending with any of the dementias and he will only continue to get worse. So do what you have to do now, to make things a little easier for you both when the time comes.
I wish you the very best.

I’m sorry you’re going through this. It sounds like being bedridden is soon on the horizon. Do you have a plan for what happens then? Talk to his doctors now about options and remember to guard your own health

It's really very hard to take care of a bedridden person at home. As you know, it won't get better. Consult his doctor about placing him in a facility where he can be cared for, and you can get your life back. Along with other questions, I'd ask the doctor if he really needs the OT and PT. His dementia may be such that there is no point. I've been through this with my mother, and though I don't recall when the PT stopped working with her, I think it was when her brain could no longer recall or command. I hope you find the help you need.

I think the main consideration is who is in control.

It sounds like you're allowing your husband to make decisions when the FTD has robbed him of his judgment. This is to his detriment. He can no longer set a proper schedule.

Therefore, at some point, you will need to take over the decision-making. He won't like it, but in order to provide the best care, you need to ignore his anger.

My 95 yo (dementia) mother would not ever get out of the bed if she didn't have to. She would love it if I would let her eat in bed and get up only to go to the bathroom. She does not want to do what she does not want to do. Ever. Like a 2 year old.

However, I make her get up and sit in a comfy chair in the kitchen every day from around 12 noon until 5:30/6:00 pm. She gets mad and will yell and yell and yell all day long until she wears herself out and is hoarse. Those are the hours that I have the sitters come so I can get out and have a break.

This helps keep her lungs clear and maintain what strength she has to be able to walk with her walker. It's also much easier to keep her hydrated by putting water in her hand and telling her to drink.

(She also gets PT and usually does well with it because it's attention for her and she loves and craves attention.)

The whole point is to keep her from being bedridden, not having to change her in the bed, preventing dehydration, bed sore, pneumonia, etc.

And I hate the hours of listening to her yell - it almost drives me crazy - but it's necessary.

So sorry you both are having to go through this. Dementia (of any type) is not a fun journey.

It can be very hard to let go of the guilt and other feelings of not being able to care for a LO at home or in their home; but rarely is the trying to do it "at home" a realistic much less safe option for either your LO or your the caregiver. As others have said, this gets worse over time as their decline moves to the bedridden and/or combative/not rational state; it becomes frankly impossible to handle in a home setting without 24/7 help.

A friend's husband even in his weaken state, was able to shove her across the room one time. It terrified her, but thankfully she was not seriously injured. A full time male aide was hired thereafter to handle him, but that was at a huge cost (about $800 a day) until he could be placed in a facility. It just was NOT safe for her to try to handle him. And even if your LO is compliant (not oppositional, not acting out) it is way too much for one person to handle solo at home; aides only come a few days a week and only for a few hours at a time.

Hiring aides for 24/7 care at home is very expensive. We have an aunt in New York City who has 24/7 at home. She is 96, cannot do any ALDs or IADLs and has dementia. Lucky for her, she has the resources to cover 24/7 care at home and that is what the family decided was best so she could spend her remaining days in her huge 3 bed/3 bath coop on the upper east side. The cost is $6K per week ($24K a month). One aide comes for the full weekend. Two others split 12 hour shifts M-F, each has one of the "other bedrooms" so they live there in shifts. They provide all her care, cook, clean, do the shopping. A visiting nurse comes weekly. Medical transport take her -- as needed -- to doctor apts. The visiting nurse and medical transport are extra costs.

By contrast, my mom -- 86 with dementia and basically bedridden, can walk about 5-10 fee w/a walker sometimes -- is in a skilled nursing facility (SNF). The monthly rate is about $15K but after spending down, Medicaid now picks up the lion's share of the monthly fee. All by $93 of her monthly Social Security and annuity payment goes to the SNF. Because she refuses to participate in any activities at the SNF AND she cannot walk; she is not in "memory care" as there is no benefit to the activities provided (she only wants to stay in her room/in her bed 24/7) and she is not a wandering risk.

At the SNF she receives all the care she needs there. She has a board certified geriatric physician as her primary who is there several days each week. There are many other physicians and health professionals there too or who come to see patients: cardiologist, neurologist, geriatric psychiatrist, psychologists, social workers, dentist, dietician, podiatrist on and on. So all the care needed is right there and they handle it.

Before placement, I was trying to provider her care solo in my house and it was maddening. Any doctor appointment was a Herculean effort to get her into my care without her falling or her falling on me. Combative/oppositional behavior: refusal to take meds, refusal to use the walker, refusal to eat properly (demanded Cheetos for breakfast). Was nocturnal, up all night with the TV blaring; screaming at night. Would fall and my husband would have to help be get her up. Was incontinent; but only let me change the sheets 2 times in 9 months , can you imagine. It was all impossible and impacting my physical and metal health. And I had to say "no more."

I am thankful we found a high qualify SNF near by and that she was able to be place there. I am also grateful that Medicaid now covers most of the costs. And I am slowing coming to peace with her getting the care she needs at a SNF and me NOT having to do this on my own, solo in my house.

Yes, plan now and look for a facility. Honestly it's in your and your LO's best interest. Let go of the guilt about this, all the best.

I am in the same situation. My wife has become bed ridden and is in pain. The nurse comes 1/week and another for a bath. Other more frequent care has Been recommended but her doctor is putting up road blocks.
even if the pain can be managed it will be a long and hard rehabilitation. It will all depend on her mental strength to recover. I have resigned that she will never walk again I just try to
make her comfortable. I have had to close my business of 25years to take care of her. Full time In home care does not make sense since I would have to work just to pay for it. I agree that to have someone there just to stand around is not cost effective or will improve the quality of life. It is funny how other people will recommend “luxury” care when they do not have to pay for it. I say do what you are doing and take it one day at a time. Take care of yourself so you don’t get burnout.

Sorry that your husband is in such a decline. The less he does, the less he will be able to do. I'd continue with OT and PT as long as they are willing to come. I would stay out of it and not push so that hubby won't get angry with you. Maybe PT can get him out of bed? Or the aides? If the aides are assertive and say "OK, time to get out of bed now", they might have success. Maybe. I would try telling him that meals are being served in the kitchen or dining room, not in bed. Again, be assertive and tell him nicely that it's time to come out for breakfast, lunch, etc.

When your helpers come, you should get out of the house! That's 4 hours of YOU time. Go for a walk. Go shopping. Meet a friend for lunch, etc. You need time to yourself.

Do the aides have expected duties or just sitting with him? They can lead him through his PT exercises. Get him up for meals or just for a walk around the house. Can he play any simple games or do a puzzle, etc.? Again, don't ask "do you want to do X", but say "Let's play cards". With my mom, asking always led to a NO but being assertive led to 80% compliance.

If hubby doesn't get more active he WILL be bedridden and you will really have to place him somewhere. Unless you want to hire 24/7 aides. The work load is quite unmanageable and it's just too hard on YOU.

So sorry and I wish you the best.

Peace be with you.

It is never an easy step but you may need to look at facility placement options for him. Speak with his PCP for further assessment of his current level of care needs and, get a case manager involved.

You may also want to contact a local hospice of your choice to get their information about assessing him for hospice admit. This would give you some potentially more help in home and the social worker and case manager with hospice can assist you with potential placement options. Hospice can also provide you with 5 day respite stays at different intervals at hospice expense to care for him in a facility they / you choose to give you a much needed break .

Time for help in the home or facility placement.

What is his pain from? Is that what is keeping him from getting out of bed? If so, he needs some serious pain management ASAP. Not sure about this, but perhaps a hospice consult is in order. They can manage his pain if his doctor can't.

If he isn't dying maybe he is bored. Did you ever try adult day care? They would give activities with other people and food and toileting for 8 hours. Cheaper than han home care.

I found that mentioning exercise did not get the same results as the PT OT got. Laying in bed definitely creates more aches, pains, and decline. Those things would naturally make a person not want to expend energy showering. Hand him a moist towelette and see if he is willing to wipe things off on his own or allow someone to help him. Getting up to eat dinner and watch TV is a good thing simply because he moved around.

Unfortunately, he can still refuse whatever you suggest. If he understands what you're saying, you might talk to him about not doing enough PT OT and doctor is suggesting rehab to help him get moving again....and to help with the pain. See how that lands and if a positive result, talk to his doctor

Please start video recording him so that you can have him evaluated by a Geriatric Psychiatrist. It is a disease that destroys his brain and his body is controlled by his brain. You can give yourself a break and stop pushing.........you'r really just talking to yourself.

Tishelle: I'm sorry that your DH suffers from FTD. Perhaps it is time for you to consider managed care facility living for him.

Tishelle, this sounds awful for you. You have received some good advice/options here. I would only add don't let his FTD destroy your life as well as his own. Make some time for yourself, whether it's when the aides are with him or if and when he moves to a SNF. You need to find something to bring you hope and joy each day. Also, given that he has FTD (like my dad), you might want to join ftdsupportforum.com