I am considering putting hubby in assisted living. What are criteria?

No one should be expected to be a caregiver for an Alzheimer's patient 24/7

No, you are not being selfish. Yes, I believe you have an obligation to care for him but not to the extent it denies you of a decent life. You've already given 12 years of your life. Doctors are quick to diagnose Alzheimer's when someone exhibits dementia symptoms. If, in fact, he was diagnosed with Alzhiemer's in his 50s, it was early onset Alz (EOAD) which usually is more aggressive than late (after 65) onset AD. Having a history of strokes and or TBIs, however, would suggest vascular dementia (VaD) instead of EOAD. In either case, looking for a new "home" would be appropriate. You may feel guilty in not continuing his care, but, I assure you, the stress will overcome you if it hasn't already. Please know that placing him in a facility where he will be safe, lovingly cared for, provided with proper medication and meals IS caring for him. I had to make the same decision and felt enormous relief when I knew my wife was somewhere that understood her disease better than I did.

AL facilities require a person need help in their care. Difficulty with activities of daily living (ADLs), eating, dressing, showering, etc., is the normal criteria. Having been diagnosed (or misdiagnosed) with AD, however, would not make him a candidate for AL but rather MC. MC units offer a higher level of care and attention. Make it a point to tour some MC facilities once restrictions are lifted. Talk to his doctor. MC placement may require a drs order.

I would also consider a nice LTC facility or Memory care. ALs are limited in their care. And Dementia patients can be a lot of work. ALs are not lockdown facilities. The residents can come and go as they please. Moms AL had a keypad entry, but the fire doors were not. If a resident put their hand on the handle for more than 15 seconds the door would open. Dementia patients can be good escape artists. Moms AL, I think, kept residents too long. Some should have been in MC (which is rare where I live) or in LTC. Because money ran out, I had to place Mom in LTC. No place is perfect but this one was really nice. Both my daughter, RN, and I felt maybe Mom would have been better going there instead of the AL.

There are ALs that have Memory Care attached. You could start DH in the AL and transfer to MC if you find he needs more care than the AL can provide. And I am with u with the toileting. If I was given a choice between bathing (which was not a favorite) or toileting, it would have been bathing. When Mom was in the AL, I told "them" when she needed a change. She was paying 5k a month to live there because of the care she needed.

You are absolutely not being selfish. I'm not sure he is a candidate for AL, however. With ALZ he made need Memory Care. But you will need to consult with whatever facilities you are considering for him. Or, for the cost of a facility, would you consider hiring a companion through an agency? A companion is the lowest cost level of help you can hire, as long as he's not a fall risk or requires being given medication by them. A companion will do light housekeeping, entertain him, drive him around for appts or fun or for errands, etc. We have this service for my aunt with severe dementia. Her older sister has all her faculties, but at 101 yrs-old cannot handle her younger sibling all day by herself. Their companion (through Visiting Angels) is just wonderful. At some point 24-hr care will exceed the cost of a facility. But if your husband is "in between" AL and MC, then maybe a temporary solution is a companion, as long as he doesn't require overnight care. Blessings to you for doing a loving and difficult thing! May you find a great solution and receive peace in your heart that you are not being selfish.

I’m so sorry that your husband is dealing with this. It is devastating for both of you. The patient and the caregiver suffer together.

I don’t feel like you are selfish. I think you are smart to line things up now before it becomes harder for both of you. You are not abandoning him. You are preparing for his future as well as your own.

You matter every bit as much as he does. So often the caregiver is overlooked and that is a shame. So allow me to offer you a giant hug. Sending a bazillion hugs your way.

Let us know how you you are doing. We care 💗.

No, it isn't being selfish.

"My life is dedicated to his well-being..." This can take many forms. Some people prefer and can continue to care for someone in their homes. Some can't. When you can't, this is where a nice MC comes in (some refer to it as AL, which MC is, but it is not just strictly AL and from your description of his abilities, he will more likely need MC.) YOU are still his advocate, his wife, his caring family. YOU ensure he is cared for at the facility without having to manage all the hands-on care. There is still a LOT that needs to be done - in my case it is my mother, not a spouse, but what needs to be done will be similar. There is a LOT to manage, just not having to do everything 24/7 (or less when you have/had day care) and not having to manage the physical care makes a huge difference. It will lessen your stress and allow you to spend more quality time with him rather than being nurse, activity director, supervisor, etc. Quality is always better than quantity!

You can still be dedicated to his well-being, just from a different perspective. Be there for him, visits, outings, etc. It can still mean a good part of your day/week, but ONLY being there for him, not doing all the other work in caring for him!

Although it might be possible to get him in somewhere sooner than later, it likely will be very limited locations, if any at all. For now, research different places, talk to the directors, do virtual tours (some will have them), compare costs, care provided for that cost, amenities, what might incur extra costs, etc. Find the place(s) that best fit your/his needs and financial ability, get more detail, determine availability (now and future), etc. Have a plan and a place for him, prepare for moving, all that good stuff! Then when the coast is clear, you will be ready. Enlist help from family for the move, if you can.

Hopefully you have all the needed documents done already (med directives, POAs, wills, and trusts, etc) If not, an EC atty might be able to assist. They can talk with hubby and determine if he is still capable of signing (we had to update some of the documents done prior for mom after dementia kicked in, and atty determined whether she was capable by talking to her alone.)

I will tell you what you are but it will take a number of words: faithful, loyal, loving, thoughtful (especially so), resourceful, brave and courageous, and human. I could say more, all on the good side of the ledger.

Your statement: "I guess I want to hear that I am not being selfish" is more than plausible; you have the essence of patience, in addition to the other attributes I listed in the foregoing.

In the immediate future, considering the lockdown from the virus, you may want to see if an agency is allowed to provide a caregiver for assistance in your home at least a couple of times a week for a few hours (or more). For the longer term, I feel that you are justified in looking into assisted living or memory care lodging for him..

For 12 years, 2005 - 2017 my massively handicapped wife (stroke), paralyzed on one side, unable to speak, survived in more or less of a cocoon, although she was most alert, happy, and still entirely with it, despite her handicaps. in 2007 I underwent triple bypass surgery and the doctors told me I could no longer care for her at home unless I was bent on dying soon. She entered a nursing home. I visited every morning and every day for lunch, and hired ladies to sit with her from 4 to 6 PM every day. (She needed more assistance in eating than the attendants were able to provide due to staffing.) Through this arrangement she and I both had enjoyable days, even though frustrating for her and very tiring for me.

May God bless you and provide the peace of mind that you richly deserve.

Grace + peace,

Bob in North Carolina

When Lock down is Over, You need to sit him Down and Yes, Expect his Frown...Of putting Him IN Assisted Living. Or HIRE someone to Com ein and Help Care for him. No other Way Out exceptto Stay and Pay....

Starting today, where you live in Maine is easing the stay-at-home orders. That said, it might be difficult to find a facility who is taking new residents. Many facilities have COVID19 positive cases with residents and/or staff, and might not want to risk you, your husband, or moving men bringing the virus into their building. In addition, your husband’s physician would need to do an examination, but most PCPs are doing telehealth, so this could be sorted out. A good facility would do a cognitive assessment on your husband to determine memory care or assisted level of care in their facility. (Look for one that has both) Keep in mind, assisted living is not a medical model.

At my mom’s assisted living in MA the residents cannot leave their rooms, the dining room is closed, the staff is delivering all meals, they do not have any social activities, no hairdresser, no podiatrist, and although I talk on the phone daily, I’ve only seen her on Zoom twice since their lockdown on March 12. The National Guard tested all residents this past weekend and those who were positive will be treated appropriately.

I totally understand you are exhausted and need a break. This might be a good time to do your research to pick the right facility and compare costs. In the meantime, perhaps find a caregiver who was willing to come into your home, but I’ve heard that’s also tough to find, given COVID19.
Good luck!

Oh can I reassure you on THIS! Ok, here I go... my brother was diagnosed at 58 with frontotemporal dementia- a terrible dementia that strikes younger people and completely changes your personality. I'd been going thru a lot of guilt re considering a facility after living here with me and our mom for 2.5 crazy years (very rapid progression and only several yrs following my dad's alzheimers yrs) 4 wks ago he finally went in and I talked to my therapist about this concern you describe. She gave me some excellent feedback which I'll pass on to you: 1) If you look at all you've been doing, would you really consider yourself a selfish person? I really doubt you'd be able to answer "yes" to that- also, most selfish ppl dont even ask :) On the contrary, it sounds like you've been doing a great deal and largely on your own. 2) actually, this isn't something the therapist said but something I read somewhere and it's this: "There is already one person circling the drain, there doesn't need to be two". Sadly, this is a terminal illness for one person, and though we will likely fight some "survivor's guilt", us burning ourselves out means two people are going to be going downhill if we start to develop illnesses and lose the quality of our lives as well. There is no good in that. 3) would your husband in his normal state have wanted you to be struggling and suffering and becoming miserable? In my case I was so far removed from things because of my sadness and frustration I didn't even realize that my real brother would say "Oh my God, get this crazy person out of your house before you both go insane!" 4) This was an interesting one for me: while there is certainly plenty of selfish behavior in the world, conversely, there's also a major place for remembering this fact: you and I are also equally important as your husband and my brother. We must separate our: conscience (the healthy check-in of what we can reasonably do), our societal and survivor's guilt (the normal, but "unhelpful" reactions) and our self-care and right to honor and protect ourselves from risking our own health and more trauma. So much is happening underneath the surface of the caregiver but we're so distracted, we stop realizing that our life needs honoring and protecting as well. 5) there will possibly be (definitely so for my brother) things that your husband may even like about the facility that he doesn't have at home! (In our case- more socializing and getting food into him that he was refusing at home in the last month here). Similarly, if you are able to feel free to start getting your own life back in a number of ways you'll likely be able to visit him in a much more healthy willing and refreshed state then you are in now! More points- Another thing folks have pointed out is that the people who work in these facilities do this FOR A LIVING- in other words, they are specifically trained to do this and have (hopefully and usually) the temperament to do so and most of us "lay people" do not! Lastly, an important precaution: I felt like there was no way we could bring my brother into a facility and we ended up getting to the point where we were all in a dangerous situation because of his insane behavior and trust me - it's much better to have someone go into a facility early than too late! Just to prepare, you'll possibly face some hurdles as you go about learning about placement, coverage, etc. but stay the course to get it all figured out and talk to your local council on aging if you need assistance getting info. Also a heads-up on an emotional level, the "loss" of my real brother hit me BIG time when he went in a month ago, which surprised me, but you can work through that gradually...

I hope this has helped. There are MANY people who feel this way and if you're worried about it, it means you're not selfish, you're just a REALLY exhausted human being.... Hugs and all the very best to both of you 💕

You are not being selfish.  You should be able to visit your children and have some resemblance of a life.  I know it's hard not to feel guilty, but you are doing a good job.  He is safe and his needs are being met.  Unfortunately, during this COVID situation you are not even going to be able to get into a facility to check it out as they are all on lockdown.  Spend this cooped up time investigating cost and coverage, paperwork and process.  Get all of your ducks in a row so that you will be ready to act once quarantines have been lifted.  Knowing that you are working on a plan should help ease the stress of it all.  Once you have some idea of where to place him, have a conversation with the children so they aren't shell shocked.  Keep in mind you're aren't asking for their approval... you are keeping them abreast of what's going on with their father.

Take care.

You had a plan that worked before COVID-19. Granted, the plan wasn't ideal, but it worked. Now, that plan can not be used and you need a new one. So, you are not being selfish; you are being practical.

I would suggest start researching the ALFs and total care facilities near you. Let them know your husband's care needs. They can let you know which type of residence would be better for him. If you can not find a good fit, maybe home health would be acceptable.

You said you are both in your early 60’s and have been dealing with this for 12 years. It is time for you to have some semblance of normalcy in your life since he won’t get any better but only worse. Do what you have to do to save yourself.

Can you hire a caregiver to come in to your home daily so you can get a break?

If you can find a good caregiver, perhaps you could even go visit your family and leave them at home for a few days or more.

If you are going to place him, can I recommend that you get a current needs assessment done so that you are doing the research for the appropriate facility. He may not qualify for AL and then you are starting all over if that is what you focused on. Any facility will require this for admission anyway. Also find out what they will need. I found everyone I looked into needed a negative TB test and needs assessment.

Best of luck finding the solution that works for both of you.

I would strongly suggest waiting until the virus subsides. There are just too many deaths in these facilities right now.
As has been said, contact a home health agency for in-home help in the meantime. At the very least, get respite care for your rest.

If your husband needs help on-going with the bathroom and has been dx with AD, I would suspect assisted living is not the answer. So my guess is while he still has some ability to adjust, you'd be better looking for a place that can meet his needs as they progress. No, you are not being selfish, you're being realistic and at the very least need some respite you can count on. Check with your local Area Agency on Aging as they may have a program available to help so you get a breather and can check things out. Whenver anyone describes this, it makes me think of the scene from What About Raymond where the guys are sitting around the kitchen table with a massive chocolate cake eating from it with forks...when Marie calls and is on the way over and Raymond says "RUNNNNN. Save yourselves!" And then scramble. Good luck...12 years is a long time to be doing it. I have taken this elder caregiving one day at a time, and I guess it has worked because when I try to figure out how long and identify particular dates I am shocked at how long it has been. We slid into it slowly. Now I am 60+ and exhausted, working part-time and taking care of the household as best I can along with the added weight of someone with dementia, who doesn't appreciate any efforts. Nor can she.

No you are not selfish. It is normal to seek time for yourself so that you can recharge.

You are not being selfish at all. My parents were both living at a memory care facility until my mom passed away on March 31st. There were many residents who lived there who had a living spouse that came to visit them often. So it is not uncommon at all to move a spouse into a facility when needed.
I had picked out an assisted living facility for my dad to move into on April 1st but they stopped accepting new residents on that same day. So he has been living with my family for the past month. He has some dementia and I can tell you it has not been easy this past month having him live here. You have been very caring and loving for caring for your husband for so many years.
I would suggest you wait out moving him somewhere right now as most likely if they accepted him he would have to be kept in isolation for the first two weeks. Maybe hiring an outside caregiver to come in for a few hours a day now would be best to give you a break. It sounds like he needs memory care and not assisted living. If you move him to assisted living I would suggest you find somewhere that offers memory care as well that he could move into when needed.
Best wishes to you.

No--not being selfish at all.

12 years is a long time to be caring for someone, who is slowly sliding deeper into senescence. It's not pretty and wears us out.

I have a friend ( a man) who took care of his wife who had multiple health issues. He was there 24/7 with almost no help. He finally called it--she was very heavy and was like moving 300 lbs of sand. She didn't understand anything. I don't think she was a 'problem' in that she was wheelchair bound--but she required care to bathe, eat, toilet, etc. He got her into a nice MC facility within 5 minutes from their home.

And she passed away a week later.

Since then, he has been on the go, nonstop, Took a cruise and went to visit as many relatives as he could--until the Covid 19 shutdown. I know he loved his wife, his actions spoke so highly of that---and no, he didn't grieve for much more than a week--I think people who lose loved ones to Alz. grieve a little bit every single day--until when their LO is gone, they're exhausted and 'grieved out'.

Although most places are still in lockdown, you can begin the process of getting a placement for your hubby.

You will be stronger and better rested after he is placed in care, and will still be a huge part of your life.

Not that it will be easy, it won't be---but in the end..it's going to have to happen. I'm 63 and tired all the time, I couldn't care for someone at this stage of my life. (Recovering from cancer).

It's OK to take care of yourself--esp when there is no one taking care of you.

You are not being selfish, and while I suspect most facilities are limiting intake, you can start the process.

1.  Contact an ElderCare attorney.  Advice attorney of current dx, and they will advise you if DH can sign POA, or if you may need guardianship, and what timing is best.

2.  Start thinking about any asset moves.

3.  Start investigating facilities.  My preference would be one where when appropriate, DH can be moved to Medicaid NH bed.

Echoing everyone here... nope, you're not being selfish.

Placement right now may be difficult, as others have said. Yes, some facilities offer virtual tours on their websites - go ahead and look at some now, but I would wait to arrange placement until you can tour several facilities personally.

Virtual tours online are quite well "choreographed," but a personal tour will give you a firsthand look (and sniff) at what's actually going on. You'll be able to see the faces of the staff (do they look happy and good-natured, or overworked and harried?) and probably some of the residents (their faces can tell you a lot). You'll be able to smell what's cooking in the kitchen, and maybe even sample a meal if your visit is timed right. And you'll be able to see firsthand if the building is clean and in good repair, as well as hearing some of what goes on with the residents, at least to a certain extent.

So take the time to find the most suitable environment for your spouse. You'll feel much better about your decision when you are satisfied that you found the best place possible.

In the meantime, do arrange for some respite care so that you can take some time for yourself, and you'll also be freer to explore the nursing facility options in your area.

Best wishes.

In ALF, hubby needs to be able to do things for himself. He most likely needs SNF (Skilled Nursing Facility) . You’ll have to look for one very soon, so he might as well adjust to it now. Don’t wait till he walks out & can’t find his way back. Or if he’s like my mother, get violent & caused me several injuries, not to mention the evil mean Insulting comments to me which hurt even more. The meds I give her don’t always work & I have to keep increasing dosage...as per her neurologist suggest. Hugs 🤗

Some criteria for assisted living include incontinence of bowel,bladder,or both, safety concerns such as wandering,fall risk, inability to provide care, and caregiver fatigue. I don't see you as being selfish. I think you are being realistic about your ability to handle his caregiving needs now as well as in the future. You should be at peace with the decision knowing that you handled his needs for a long time.

There are some promising-looking memory care specialists in your area, and some of them offer respite. I should start with respite - it's a good way to sample what a place is really like, behind the brochures.

I would go for a specialist memory care unit because your husband is likely to be a long time on this road before he becomes frail and starts needing more typical services for seniors.

I hope it's not a rude question, but is money a problem?

You sound so tired and guilty for wanting to have a life of your own. Let me acknowledge that you are feeling finished and, at your age, beginning to slow down. You want to quit and I don't blame you. When your husband lives in an assisted living facility, there will still be a lot for you to do with him without the "taking care" of him that you are doing now. You will just enjoy him so much more when you are able to do it on your own time and with the knowledge that someone else is being paid to cook his meals, help him toilet, dress and see to his comfort. You can then go out for lunch or dinner; see a movie; go for walks; have a picnic, etc. I'm so happy that, when the time came, Mom agreed to assisted living and now memory care. We enjoyed each other so much more then and now, even tho her memory of me is vague. Her eyes still light up when she sees me. It's all good.

Go for it and don't listen to the naysayers. Listen to your good sense. I did and am so happy about that decision.

You need respite badly. You've most certainly gone the long haul. Prayers to whatever you decide - facility living or not.

Your financial plan sounds reasonable but I've been told by folks here who have been through the Medicaid process that when there is a "community spouse" involved, it really pays to get advice from an Eldercare Attorney who is familiar with your state-specific Medicaid program.

I don't think you are being selfish at all.  That said, I would not put him in a community living situation until this blows over some.  Too many bad things happening in these places.