I think I made a poor decision moving into AL with my wife who has early onset AZ. My loyalty is fading the longer I live here. Guilty.

No. You should not as you say 'go down with the ship' and stay with her. Not when your own health is poor and deteriorating.
Seniors not suffering from dementia should not be living in a community with seniors who do. It is a terrible and isolating experience for a person with no dementia to be surrounded by people and have to live with people who do have it.
Let me tell you something and it's based on nearly 25 years of being in elder care. If your wife is out of it with dementia it will not matter to her who is doing her care. So long as the caregivers are nice to her.
Move out into your own apartment. You can visit your wife daily. Do this before the love and loyalty you have for your wife turns to resentment. She will acclimate to you not being there 24 hours a day. If her Alzheimer's is progressing rapidly soon she will need more care then assisted living provides and she'll have to be placed in a Memory Care facility or nursing home.
It's time for you to get out of there. Move to the apartment and supervise your wife's care to make sure it's being done well. You don't have to do it yourself anymore.

Get a financial advisor and an elder care lawyer. Protect yourself financially and physically.
Rent a room from Craig's list if you have to. Visit her everyday if you like. Start walking, going to the library, think back to what you liked doing as a kid, maybe making models, painting, reading, flying kites, go near a big body of water and just stare out and feel peaceful.
The day after the big snow this week I couldn't sleep. No one was in the street at 2 AM. I dressed warmly and went outside. The utter quiet, the air, the cold was glorious, and as my late father-in-law use to say, salubrious.
Ethical dilemma, boy, it's so personal. I just paused to look up Ethical Dilemma.
Sometimes, I think I could go to a planet with no oxygen rather than be in this 15 year hell. Then I imagine being in his Alzheimer's head looking at the world through his innocent childlike eyes, so unsure. Then the reality pendulum swings back again - this is no cute Benjamin Button movie. It's tough. If I could afford help, I'd still have a difficult time letting go of him to other's care, but, I think with time I'd become accustomed to that situation.
I remember someone wise say that our obligation is to make sure our loved one is being taken care of, not that we must do the job. Especially you with your own challenge.
May I further suggest that you join a support group for caregivers, but, with the added burden of your illness, well, I just searched online "Leukemia and Lymphoma support group" it exists too.
I'm a lone caregiver, no family, and by nature not a joiner but after 11 years of hacking it alone and another couple of on an off years trying different groups on for size I found a great fit and a good bit of solace for the last 3 years. We Zoom meet. We do a little venting, and like this AgingCare forum we throw problems out and someone may come back with a similar situation encountered and their resolution. Or the discussion leader will offer resources. Great for resources from years of collected recommendations from former and current members.
It maybe helpful to go to a hospital and say that although you may be barking up the wrong tree you need a social worker's help, or at least direction. Ask your hematologist oncologist's office for help to talk to someone. Stay strong.
My heart goes out to you. It's a big ball of _____ for sure, but have courage.

Explain to your wife that you need to move for your leukemia treatment. She would need Memory Care or a privately hired caretaker to take over your duties.

Having time and space for yourself, without doing all the caretaking, is important for your own health and recovery.

Oh, I’m so sorry. My mother lives with me and it’s becoming hard and can be very stressful. It’s important you take care of yourself if you want to take care of her. I think you, as many of us care takers, have the right intentions on wanting to take care of our loved one. We make that vow to be by their side and comfort them, however, we don’t fully think how we will handle it when they progress. You won’t be able to comfort her, if you don’t have the energy and can’t take care of yourself. When I used to visit my mom, it was the best hour of quality time. She did forget that she saw me, but every time I saw her, she was very happy to see me. You can still keep your promise to be by her side by visiting her and spending time together. We have to grieve that they are not the same person and give her the best of your time, even if it’s not living with her. I will be praying for you.

You are providing all your wife needs - sadly she no longer has a 'need' for you. That is really hard for you to cope with - do what is best for YOU - it is nothing to do with loyalty - it is just the reality of dementia. You are unwell and looking after anyone with dementia is a job for someone who is well.
Take care
Kath

mbrotherto1: Imho, as you are quite ill with leukemia yourself, there is NO way that you can carry on in this dynamic. Also, your wife requires a memory care facility as an assisted living is not the right fit for her. You're going to require care for your cancer.

You can certainly be your wife’s advocate from a different living situation for yourself. You’ll still be caring for her, but also caring for yourself which is never wrong. Move out and visit her regularly. I’m sorry you’re going through this and wish you peace

Difficult decision for sure. Maybe it would help to slow down and do some “plus-minus” thinking. You do have some things going for you in your present situation if you can make it work for you and not against you. First perhaps a little acceptance that these are life changes that you can’t control - there just are some depressing factors here, but before you jump into a major change, let’s look at the things in favor of staying put vs leaving.
First of all, you say you have no home and no family to help you. It sounds like you are lacking in an outside support structure. You also say you have a recent serious diagnosis affecting your own health. Those are compelling reasons to think about whether leaving your present living situation will improve or further complicate your life. Right now you have a place to live where there is a staff and other people around to help your wife. You are apparently providing a lot of her care. Can you adjust that so you can have a little more breathing room? You say your wife doesn’t know who you are. That might be true but you know who she is and she probably at least recognizes that you are helping her. You could use more help from the staff if that is possible. If that can be arranged can you enjoy the extra time for yourself for any interests or at least take a walk in a nice park or go somewhere to read to give you a breather. Are there any retirement men’s groups in the area or something more suitable to your personality that you can do? Ride a bike, take a drive, go see a movie, go to the zoo. Anything to give you some “me time.”
It sounds like you could also use a little vacation from time to time. Is that possible? Is there anywhere you can go for an overnight or more? Are you financially able to do that? Sometimes a complete break can be the ticket to having a better mental outlook. You can’t change your wife’s condition or your medical challenges but you can give yourself permission for a little escape if that is within your means.
Conversely, if you really just can’t stand your situation and are certain that none of the suggestions above will do any good or are possible, or are simply not what you want, then by all means make another plan. Don’t feel guilty - you are not the cause of your wife’s condition or your cancer diagnosis. Those things can happen to anyone. Make a plan, think it through, and then do the best you can with what you have - without fixating on the negatives. Best wishes.

No one has mentioned the possibility of financial pressure....you have no home of your own?...possible that it was sold to pay for the AS...soon your wife will need NH for her level of care....skilled nursing...unless the facility upgrades this care in the same place...as to yourself why do you not have a home?...they will take care of your wife...you can no longer do it...the only way out is 24 hour care in your home..which is 35 dollars an hour..or hospice in your home eventually....but as we said you do not have a home...so I would look for a rental.....NH here was 8000 per mo for a facility that also took in Medicaid patients...my Dads payment was his social 1900 dollars ....so its all very expensive as well if you are not wealthy or have long term health care...were you a Vet?Look into A&A...good luck..

Til Death Do We Part.
I'm sorry for your situation, we all are in the situation or one like it with a loved one. My Christian beliefs tell me to care for your parents and care for your spouse. It can be extremely difficult but it's what a moral person does as best they can. I know men, some who aren't Christians who took care of their ailing spouse for over 10 years with Alzheimer's or other ailments at home because that was the woman they married for better or worse, sickness and health, etc. If you physically can not care for your wife anymore, then let the facility take over and move close by. Then you can visit as often as possible. Your wife has a disease, which is not her fault. If she had cancer, would you leave? If she was wheelchair bound, would you leave? Sounds like your marriage vows were on conditions, which is sad. I know this sounds harsh, but our society today is just in it for themselves, others are secondary. Where has our morality gone? I might be in this position one day and I hope and pray my family will care for me as best that they can. My Mom is in a Independent Living Facility where she loves it because she has peer socializing, meals, and cleaning. I go over every few days or more to check on her, take her to appointments or anything else she needs. She loves it because she still feels independent even though she couldn't live in her house anymore due to upkeep. She stays here when she's sick, the entire quarantine or anytime she wants to. She has her own room here when she wants it. All I'm saying is that family is important, your marriage vows are a covenant you made with your spouse, a binding agreement to be there for each other. She is still the woman you married.

happy new year 2022 to all of us!! :)
wishing us lots of luck!! :) :)

dear mbrotherto1,

ethical dilemma assistance?...

there are many ways to help.
helping, without sacrificing oneself, must be possible.

----

it's hard: so many of us are in ethically difficult situations (how much do i help my LO vs. how much do i help myself?).

only the individual person knows all the facts --- and in the end, no matter how well-meaning advice is, the individual (and the LO) has to live with the consequences.

i suppose it comes down to trying the find the best way forward that one can live with -- ideally, a decision that makes one proud, years from now.

this can go in degrees, in either direction: having helped LO a lot, having saved oneself in some way.

if our LOs would be in their right minds, and if our LOs are loving towards us, what would they tell us to do?

i wish us all well in finding the right balance.
ideally, some great solution presents itself.

hug!!

bundle of joy :)

You know what they tell you on an airplane.....put on your own oxygen mask before you try to help others. That advice is good in many scenarios...yours included.

Stressing yourself and or shortening your life is in no way beneficial to your wife.
Forcing yourself to live in a facility that you are not physically or mentally ready for doesn't sound like a good idea.

If your wife has deteriorated to the point that she no longer knows who you are, she may need memory care. Get her the level of care she needs and then find yourself somewhere to live that you can afford and manage. You can visit your wife as often as you like. Remember, she is the one with mental decline, so you are making decisions for her, not the other way around.

Take care of yourself.

I agree with others here: talk to your doctor, prioritize yourself, your health, and your mental well-being. No matter whether you move out or not, your wife will be cared for. You will not be leaving her "by herself". Also, you say "she would never want me to move" - please recognize that that person, the pre-AZ person, is not the reality right now. The reality right now is the woman who does not know who you are, and who may not really care which of these people she does not know takes care of her. How realistic is it for you to hold yourself to a standard that she no longer can have, especially as it is harming your own health? I can't believe that she would want that, either.

Scale back your expectations for yourself. Give yourself space and care. Put on your own life jacket before attempting to help others!

I took care of my husband at home and finally d to put him in a MC facility. Did I feel guilty, you bet I did. I became depressed, anxious, crying all the time. The administrator said “you HAVE to take care of yourself!” I left her office and drove directly to the doctor. It was six months that I had my last checkup. I have what my doctor calls “a complete overhaul.” Glad to say I am doing ok. Now don’t feel guilty for doing something for yourself, you did your best for your wife so now it is your turn. Don’t wait wait they put a headstone on your grave!

It is essential and moral that you now move to care for yourself. If you go down, don't underestimate the likelihood of this, then who will she have?

Leave.
Although you need to feel the quality of your life will be as good as it can be - or better than it is now.
* You know for sure if you stay that you will be more depleted physically, emotionally, psychologically - all ways - as time moves forward.

- Ask yourself why YOU would want to stay after she 'no longer knows who I am?" Acting out of guilt isn't love, it is something deeper inside you that isn't resolved. You have an internal conflict (this is obvious). There are many forms and qualities of love / loving. Love is taking care of yourself to be the best you can be when with your wife, and first doing what you need to do for your own health. With your diagnosis, you need to take care of yourself, which you are not doing now living there with her. You know this. With self compassion, prayer (to who or whatever you believe in, i.e., your inner guides), accepting how you feel vs trying to block it or push it away or be upset with it (it being your feelings), learn to be a support to the guilt by listening to it. This is an aspect of my training in FOCUSING (By Eugene Genlen ...? forgot his name). Focusing may help you. Look it up and find a professional to work with you (zoom, phone session). It is an inner exploration by giving your feelings a voice - and listening to THEIR feelings and needs "not" yours as the outsider. It is giving you space and room to explore your feelings and needs, from their perspective. It is a fascinating model to work with -

* If you leave, you have an option to find ways to move through your feelings without the added stressors you feel now, which will increase (as you indicate she is losing cognitive functioning more rapidly).

* While no one here is in your shoes, if it were me, I would put myself first, perhaps for the first time in my (your) life and enjoy the moments you have. You have taken on too much and now you know it. It is time to leave and find your own place / space and visit as you can.

* I work with people inflicted with dementia. I have a friend now 88 losing some cognitive functioning. We all need time outs; renewal time. You need more with your illness. How that looks like is as unique as an individual and the person inflicted.

* Perhaps you can rent an Air b'n'b first for a while so you can have a 'room of your own' while easing in changes with your wife (not being there all the time).
- She may get angry with others there (strangers to her) and she may be very hurt and confused with these changes. Expect this and 'try not to' interpret it / feel it as guilt in yourself. This is her dementia and perhaps years of dependency (I don't know). It is a change and both of you will need to adjust.

* Ease into letting others care for her and for her to get used to others caring for her. She is likely extremely dependent on you although you can only go forward now for yourself. The saving grace that as her dementia increases, she will forget more and likely not be (as) attached to you being her sole care provider... as sad as it is to say this. (I believe my client with severe dementia forgot she was married for over 30-40 years. She is in memory care.)

* You need to heal for many reasons.
Consider the quality of the life you want now moving forward. We manifest what we think. We 'think it' before we behave it or put it into action. Let us know how you are doing and what you decide.)

Gena / Touch Matters

Surely you see here that you are a gem for initially going into AL with your beloved wife; you have already gone 'above and beyond'. It is a fluid situation, in a sense, with her condition only going to become more difficult in terms of caregiving and your very serious diagnosis as well. The most loving thing to do is ensure your wife is in the very best facility for Her needs and then set yourself up as close by as possible in a situation that meets Your needs: home comfort/privacy, medical needs, social needs. I agree that your 'guilt' is grief, with maybe a tinge of regret that you cannot continue with Plan A; forgive yourself and develop Plan B, and even consider future possibilities, Plan C, etc. Take advantage of all the experiences of folks who participate in this forum because it's a wealth of Lived Experience and support. All the Best.

I would advise you to talk to your doctor. Given that you are dealing with a health crisis of your own, you are facing multiple stressors. Your doctor can better advise you about what is reasonable care you can provide for your wife - given your own condition.

My thoughts are similar to PeggySue's, that as your wife will need MC, your needs could be met in independent living within the same facility. That way, you will be near her, but also near help should you need it while you bravely fight your own health battle. That perhaps means, meals, housekeeping, or whatever you find you might need short-term. Please take care of yourself. And I also agree you are using the wrong g word - it is grief. Peace.

My MIL has S4 non-hodgkins lymphoma. She was hospitalized for eight rounds of chemo, and four incidents of infection requiring hospitalization. Three months after going into remission, the cancer came back in her brain, meaning more hosps for chemo, high steroid use and daily radiation. Now she's on the list for Car-T, which again requires hospitalization.

She had functioned as the informal caregiver for FIL for years. He had a stroke when all of this was going on. They pivoted to full 24/7 home care, not just for him but for her.

An AL offers hot meals, housekeeping and maintenance-free living. You might well find that the AL can tend more to your needs as well and would be cheaper than finding a whole new place and then having to hire aides for yourself.

Yes, the possibility that you die before your wife is quite real. You won't be able to continue caring for your wife indefinitely. You got to take care of yourself.

First of all, wow. That you were loving enough to move in to AL with her already demonstrates you went above and beyond for her. Your health needs attention, and you are correct that the stress of staying in your situation will make your health worse. I believe you need to grieve the loss of her ( cuz the real her is gone), let the professionals at a memory care facility take care of her, and you need to move to your own place and focus on your own health. You can visit her whenever you like, and not have the stress of being a caregiver. I offer this advice based on a very similar situation between my father ( with cancer and other health issues) and his wife ( with AZ in memory care). Now he can focus on his own health while he is at his own home and she is with the caring professionals.

mbrother, my heart goes out to you. You quite honestly cannot change what has happened to your wife, and as she descends into Alzheimer's she will no longer be the woman that you married. Meanwhile you have your own illness and quite honestly you need all the positivity you can get in order to fight your own battle, or, as you say, your ship may sink before hers. Where will that leave her? Without even your visits?
I don't know how far into her diagnosis your wife is. Or how much she can understand. But if she is able to understand anything at all I would explain all of this to her, and I would move into your own place, negotiate your own care and battle, and be as much support as you can in her assisted living situation. I cannot know how much of your funds will go to her care, but you may need to see an elder law attorney about some division of assets that will allow each of you to have the life that fate has ordained for you at this time without one of you sinking the other financially.
I love my partner; we are together now for 35 years. But I will be honest with you; I would not do this for him and I would be heartbroken to think he would do it for me; we have discussed this. At 80 and 82 respectively we are well aware what is coming one way or another to us, and one of us will fail first.
You used the word guilt. Of all things I would like to tell you the first and foremost is to change your g word. You are using the wrong one. What you are feeling is grief. You are not omnipotent and you are not god. Nor are you a felon. Guilt assumes that you can change this and you cannot. Grief recognizes that this has come to your wife and to you, and that it is sad, and now the world is completely changed, other than it was and out of your control, that it must be recognized and you must work within it well as you are able.
I am sooooo sorry for you for this. My brother, the best man I shall ever hope to know, was diagnosed some years ago with early probable Lewy's dementia. I know the pain and the fear and the wishing you could make everything right. I know the worry and the inadequacy of being human. But we met it with honesty together, helping one another the best we could. I did recognize however that I would never be capable of in home care, and I was a nurse all my life.
I wish you the very best. My heart hurts for you.
As to ethics? You got that DONE. You got that MADE. Someone without ethics never asks the questions you are asking of yourself and of us. I promise you, you pass ethics class.

I agree with MJ1929; your wife belongs in Memory Care Assisted Living and you need to move out and on with your life if you're able to care for yourself with leukemia. The staff in AL or MC is perfectly capable of caring for your wife and you staying with her w/o her knowing who you are serves no useful purpose, really. You can live independently and still go visit her frequently to make sure she's being well cared for and that you can give her a kiss & hold her hand. Moving out of the AL doesn't mean your love for your wife has faded away; just that you need to look after YOURSELF now, which is as it should be. Ethically speaking, you're leaving your wife in good hands, so you owe it to yourself to see that you're in good hands too!

Wishing you the best of luck with all you have on your plate.

AL isn't where she belongs. She needs to be in Memory Care, and you need to be freed up to just love on her while continuing to live your life.

First you need to figure out where you will live and whether this facility can handle her increasing needs or if she will need to move also.

I think that you should gradually allow more of her care to be handled by the facility, then slowly take a day away, then a weekend, then restrict your time with her to visits only. I wouldn't try to discuss this with her, just do it.
Dear I have to go out to xyz and the aide Susan is going to take care of your bath today, love you, see you later, bye!