Looking for advice and support. Moved Mom into memory care on 1/10 and Dad now plans to take her home.

Stay strong. My Dad, 89, cared for my mom with Alz in their home. But he was unable to make health decisions. When she could not get out of her chair due to a UTI, he waited until the next morning to call me. I called 911 and got her to the hospital. All this UTI, confusion, pneumonia and fever caused her swallowing to be off and she began to aspirate everything and get aspiration pneumonia. She passed away within a month. My Dad moved in with me. In looking back, the best scenario would have been for my parents to go into assisted living together when they were doing fairly well and could adjust to it together. Couples want to still live together after all these years. If they went into assisted living when they were able to, and if I would have made that judgement call for them, then when one passes, the other has adjusted to the new living situation. Timing is everything.
As husbands age, they usually aren’t able to take care of a spouse with Alz and make good decisions in their home.

It does sound like they're in denial. I guess they just can't see how well she's doing in memory care. I had a neighbor years ago whose wife had Alzheimer's and he tried keeping her home as long as possible. When he had a mild stroke their kids put their foot down and they put her in a memory care facility. I'm sure your dad misses your mom's company even if she does have Alzheimer's and the issues that go along with it.

Could it work with both of them in Assisted Living, even Independent Living? Your father would still be her nurse, but there would be support and assistance with 'getting things done'. And he would be there to monitor how she is treated. Could you provide the supports that are provided now, if they both moved to AL or IL? If it is possible, it would be better than the current situation, and provide for a smoother transition to higher care options for both of them. It's worth consideration, perhaps.

Honestly, two days is not even close to enough time to get an idea of what will or will not work in this situation. This is a hard transition for your dad. It takes time and, at that advanced age, it will take even MORE time to adjust than it would for someone younger. I wish no one ever had to go through this type of thing. But, the reality is that he will quickly forget the struggles, likely get her back home, and you may be right back to finding her another place and putting her through another move in a few short months.

It would be better to say that, if in THREE MONTHS, things aren’t working, then you will look into options.

If he is adamant, you may consider simply throwing the ball back in his court. You mention that you will take all of this on. Gently, I ask, “why?” If he is fully competent, HE should be the one to get everything in place to move her back home. He can talk with the facility, he can arrange movers, he can get the medical help (nurse, bed, etc.) in place BEFORE she arrives back home.

Sometimes, when an elder isn’t happy with a situation, the only thing that helps is having other people do their bidding. Have other people “fix” the problem. Especially by jumping through hoops. They feel like they have some control in a very scary situation, and the activity is distracting from the real problem.

The real problem is that his wife needs care, and he is no longer physically able to give it. You can’t fix that for him. He can’t fix that. The only thing that can be done is to alleviate the burden on him and make mom as comfortable and secure as possible.

I know it was a ton of work for you and maybe siblings to get to this point. We have been there. I would caution you not to grab this and run with it. They both need time to adjust. You have lives you likely have to get back to.

This is not an emergency. I know it probably feels like one. Capable people like to get.things.done. Sometimes, we all have to just sit in our new normal and find a way to live with it. Sometimes, we have to realize that we can’t take away the fear and sadness that comes with old age and especially with dementia. We can only hold their hand and tell them that this, indeed, sucks and we love them.

You may go a different route, but I would encourage you to breathe on this for a lot longer than a few days. Help them/visit as needed, but go back to your living, and let them adjust to their new normal.

If he wants to change things and is telling you he is competent, then he should be able to execute plans without your help. If he needs your help to get her home, he probably isn’t capable of carrying this through to the end. From swallowing, this gets radically more difficult.

Parents at this age inspire kids to heroic measures by pushing buttons and/or because you love them and want to see them happy. You cannot give them happiness other than a family that listens to their stories, hugs them, visits relatively regularly. Building rabbit holes to fight old age is an exercise in futility and draws attention away from creating a best possible end. Just some food for thought.

Oh, and if the facility has an assisted-living wing, it might be worth it to encourage him to move on-site. He gets to maintain some independence, can see her when he likes, and can get things done around the house:)

Swallowing problems in the end stage of Alzheimers are very common.
Aspiration will lead to infection and possibly death. Trying to avoid this takes a big effort, having to blend food and using thickener. I agree with others, maybe you can find a place for mom and dad together. Small assisted homes could place mom and dad in one room. You can ask an elder referral agency to find you such a place - usually no charge to the family, as the facility pays for the referral. The large corporate facilities are much more expensive than small private homes for 6 (RCFE) Residential care facility for the elderly - they often provide much better care.

I haven't read all the responses, so forgive me if I am repeating.

If your siblings are serious about being more involved, which we all know is a giant IF, then they can do memory care duty so dad can get things done at home, start adjusting to life without his beloved and see if they really mean it or are just worried that they won't get an inheritance.

Can you get a social worker and the DON to meet with dad and siblings to explain what they are looking at for future care and that they should really give it the old college try?

My dad did the AL, got better because of the care, then left because he didn't need AL. Six months and 5 hospital visits and stays later, he still denies needing any help.

I hope you find some way to keep mom where she is getting the care her condition needs.

Hugs!

LadyMead, your Dad is speaking from his heart, and he feels he cannot be Mom's protector if Mom is living separate from him.

My Dad went through something similar. Due to head trauma, my Mom couldn't remember how to walk or even stand, yet there would be days when she would tell Dad that she walked for 20 minutes. Dad wanted to hear that there was hope, it is only normal. Dad wanted her home, too. He also was heart broken.

It would be sad to see your Mom leave her Memory Care especially since she seems much happier being there. Time to pull out the "theraputic fibs" and tell Dad that Mom's doctor says she needs to stay there for 3 months, at the end of 3 months, she will be evaluated to see if she is ready to come home. Then use another fib saying after 3 months, she's not ready.

Otherwise, later down the road and Mom is back home, you may find all the facilities now have a long waiting list should Mom need to return back to Memory Care.

And you will find yourself having to care for two parents, instead of solely your Mom.

Once you have located and accessed a good memory care program, LEAVE THAT ALONE, unless there is a compelling need to change (safety/neglect concerns severe enough that you would file a complaint against the facility!). Dad is in denial. He is lonely, and he misses his wife IN THEIR HOME. But, because he is not capable of independent care for her, this cannot be his independent choice! You have a say, because some of this responsibility is falling on you. Stay the current course and overrule Dad. Put your mom’s needs FIRST.

You are really the only decisionmaker who counts here. You helped your parents a lot. Your brother can be the one to help, if he thinks Memory Care isn't right for your mother.

Don't back down.

With her swallowing getting worse, I’m afraid he can’t give her the care she needs as she declines even more. The move to memory care probably went smoothly since she was a transfer from a hospital. These moves seem to be much harder to pull off when the person is in their home. I don’t know what things around the house he’s not getting done...maybe you or the sibs could help with that, or take over some visits to Mom so he can stay home. I completely agree with the posters who have recommended saying that now that she’s there, this must be a 1-3 month trial. You could use that time to investigate facilities that could accommodate them together.

I have a similar situation. In 2015,my mother was admitted to a geriatric psych ward for stabilization following a UTI. She was then moved to a Dementia care facility. After one month there, in January of 2016, my dad took her home. She was doing well with the meds and was no longer emotionally abusive toward him. My siblings and I knew that she needed to stay, but my dad calculated the cost and knew their life savings would be gone in 18 months. I told him there were financial options, but he did it anyway. The past 3 years have been an emotional hell for my dad. My parents suffer needlessly. My mom stopped taking meds, says she is not “crazy” and is miserable. It will take another major “incident” of some sort to get her the help she needs. My 3 siblings and I no longer live in the same town and I trace 3 hours every other weekend to help out...I’m the only one that goes on a regular basis. Dad is 88, mom is 85. My advice....LEAVE HER THERE! Good luck with it all, I emphasize.

Would the facility consider accepting your father as a temporary resident? He could then be an unofficial team member, supporting your mother's daily care; and the house could go into suspended animation until - well, until. No need to rub it in.

OR

Agree to the return home on condition - in writing and signed - that there is a fully supported and staffed care service in place.

It does sound as if he needs to be with her, in a way that brings a lump to the throat; and if your mother's reflexes are beginning to falter perhaps there isn't very much road ahead (do you have an actual assessment on that point?). I'm not sure that any plan that doesn't include their being together is going to stick.

My husband's family is going through the exact thing- complete with siblings who say "why does she need care? She seems fine to me" and a caregiver who refused to have help into the home.

We were advised to make the nursing home aware that we didn't think home was a safe discharge for her due to her husband's refusal to allow outside help, advanced age and physical strength. We did that in writing. The nursing home then said they could not discharge her without a safe discharge plan in place. He strongly resisted having them set up a plan and while they argued about it, her swallowing got much worse. Now it is clear he won't be able to feed her at home and he is slowly accepting that she has to live in the nursing home. Her physical health is much better now that she is getting care. However, her Alzheimer's is much worse.

You are correct. The time is coming when he won't be able to care for her at home and moving her back and forth may very well accelerate her decline.

If the sibling with concerns about the facility's care would like, he can investigate a lateral transfer to a facility that he thinks is better. You may be in the difficult position of explaining to your dad that you will not agree to be part of the discharge plan.

Best of luck going forward. This is hard.

Another thought...your Dad has given you 3 reasons he’s not happy with the situation. That’s good. Perhaps you can have him prioritize them. Then you could work on them individually and in order. Not happy with the care? Address that first. No time to putz around the house? Get more help with that. Work on his biggest worry first and try to chip away at them, instead of him just feeling overwhelmed with it all. Also you haven’t mentioned how Mom feels...is she happy with the move? From what you’ve written it seems so? If so, that’s a huge part of this equation as well, and he may not be taking her happiness and wellbeing into consideration, which you could gently remind him of.

I am in a similar boat as your dad, denial! My children are telling me it’s time for memory care for my husband, and most of the time I agree, but there is still that feeling that I should be able to handle this longer! He was just hospitalized for a week and when he came home, it wasn’t too bad for the first few days, then I started getting worn out again, and I’m ready for him to go! Finances does play a roll as well, I worry about my retirement and will there be anything left for me! Maybe your dad is worried? The care facility I’m looking at will allow me to spend the night with him, maybe your dad needs to do that, as a reminder to what it was like at home, getting up multiple times, never getting a nights sleep! Best of luck to you, you sound like a great person and very loving daughter! If your the one involved, you make the decisions, the others are just talking the talk, not walking the walk, you are!

You didn't say whether your mother has the tendency to "wander." That was the deciding factor in placing my mom in Memory Care. She began sneaking outside in the middle of the night. We had a neighbor who did the same thing. He snuck out while his wife/caregiver was sleeping and a neighborhood search by state police and firefighters finally located him. He had drowned in the creek near his house. That scared me enough to look into a memory care facility. Since Mom has been there, she has been more active, more alert, and has formed friendships. There are some down sides: she hates the food, has bad relationships with some of the other residents, and her personal possessions sometimes disappear, but the peace of mind we enjoy knowing she is safe and well cared for and always has someone to talk to outweighs any negatives. If your mother doesn't wander, she may soon start and won't give anyone a warning. Is he prepared to deal with what may happen if she does?

You may want to consult a geriatric specialist. They work with your parents' doctor and provide a little more support and knowledge about senior issues. They have social workers on staff too. Ours is wonderful and worked with my sister and me to educate us about Alzheimers and being caregivers. She was the one who told me "You need to stop being your mom's caretaker and go back to being her daughter." It was advice I took to heart and it has helped a great deal.

The simplest answer is what others have said - leave mom in the MC facility! She is doing better than being at home and this is all about what is best for HER. Moving is a definite trigger for backsliding, so moving her multiple times will be worse than dealing with the siblings and dad! 

After she has been there for a while, you can try a day visit with you available and see how things go, but I would wait a good long while. Two days is not enough for dad to get accustomed to this and mom seems to be adjusting well. Our mother hounded one brother for about 9 months to go back to her condo. Then it shifted to her previous home. The suggestions to tell him wait 3 months and we do a revaluation is something you could try (and ensure that eval requires a revisit in the next 3 months!) Others have said if he is capable, let him do ALL the work to move her. Do NOT enable him by doing it for him!

As you are well aware, she is NOT "cured" and will NOT get better. Moving will only make it worse and as the others have said, if you pull her out, what are the chances of there being no room available if you need to move her in again?

Unless siblings have a legal say in any of this (POA or guardianship), ignore them. They are not "hands on" and have no clue nor would I count on their "help". If they truly want to help, suggest they help dad with his tasks around the house! Instead of discussing it with them, try to educate them - articles, meet with the doctor, etc. It is not likely you will change their minds on this, so if you make an attempt and they rebuff, ignore and/or still maintain the same mindset (set in concrete!), then let them complain all they want and ignore them.

Find out specifically what this one brother says is not being provided - have him meet with staff to discuss this (make sure you are there!) How often does he visit mom? Does he really see what care is provided? More than likely he thinks she should be getting 24/7 hands on and that is not typically the case. If she needed skilled nursing care, a NH would be a better place, but if she doesn't need that, don't go there. Even in a NH they will not get 24/7 hands on care and MC will be better for her for now (socialization, activities, etc.) Our mother is mostly still able to care for herself, but needed a safe environment. She doesn't need 24/7 care. Others in her MC need help with many activities. Have them spend a day there and see what is/isn't done. Have them specify what they feel was promised and is not being provided.

As for dad - clearly he is in denial. Can you have the doctor or staff speak with him (assuming doctor is on board with this!) Can he adjust his own schedule to get tasks done (if siblings are not helping) before he goes to visit mom? We are not in the same situation, however I suspect if dad was still here and okay, he might behave the same way. This is not about dad or the kids, but mom. Do NOT battle with dad or siblings. This says it all:

"... I want what is best for them, but I see Mom thriving in memory care after just these few days and the difference from when he has her at home. She is eating better, sleeping better and moving around a ton more. She is better around people and with engaging activities."

It isn't easy to fight the others, but stand your ground. Do not get into arguments over it. This is what it is, and this is how it will stay!

"He thinks he will be able to just send Mom to Memory care whenever he needs a break - I am not sure if this is feasible." 
Not really feasible and he needs to understand that. Is it possible he also has the early stages of dementia (forgetting how bad it was when she was home?) Be supportive, help dad with tasks and gently work on him to get him to understand. Allow him to visit all day every day if that helps him! You, and if possible the others, can take up the slack at home and allow dad to be with mom.

READ and reread the post from 499HopeFloats - that was a good post!

There is an adjustment period for everyone. I agree with Msmacintx LEAVE THIS ALONE.

My my suggestion to your dad is we’re doing what’s best for HER. Maybe make some suggestions for him to do differently at home.
But, giving written notice to MC - DONT. If you have to get lost in the “ dont know who needs to get approval for?” Or “ I need to start calling home health companies to find 24/7 - oh my dad look what this costs??? “ STALL for time for her to adjust and he will, too.

Leave Mom in memory care. Pretty soon you can and will need to move your Dad there too. You take over care of the house & try to get it ready for sale...donate, sell or throw out stuff you no longer need. Get poa & health proxies for both of them. Don’t back down! Hugs 🤗

do a trial run
have everyone over for the day have her come home for a day and see how it goes
let dad to the care giving YOU STEP AWAY.....
blessings
hgn

You haven't said whether you have POA or not. If you don't, you have no more authority than dad or siblings to arrange her care. In my mom's case, I had to step back while others took advantage of her financially and she had continued decline in health until she gave me permission to intervene. Then, I was able to get her help and protect her remaining finances. With your mom, you definitely need to get guardianship and possibly on dad too. I have 6 siblings. I kept them apprised of mom's health and finances, allowing their input where feasible.

I think the medical and possibly legal people need to step in. If she has Alzheimers and he is in his 80's with problems, he is in a state of denial and can't see he is NOT superman. The medical people must collaborate how to handle him that she cannot go home and he is not equipped to care for her. And under no circumstances should you have guilt wrapped around you or be made to suffer because of what your parents are doing. YOU can't fix this - it is going to take outside help. And a to your family helping, I can assure you - they are going to back off even more with time as things get worse. You need help and professional advice now before it gets worse. Is it possible that your father could live in the facility with your mother. This is very sad - but do NOT let it destroy you.

Might any of her doctors involved with all of this help you out and either say themselves or back you up saying while she didn't need to be in the hospital anymore she isn't ready to go home yet? Take the position, which isn't really wrong, that she still needs 24 hr skilled care (something you and he can't provide), maybe they need to evaluate her still for other medical needs or they need to be sure the UTI is fully gone and not just weekend and waiting to come back with a vengeance. Whatever is reasonable but not focused on helping him, focused on it being best for her and what she needs right now. Once they have a good evaluation of her needs and how those can and will be best met everyone will discuss the logistics of her going home (or as we know how reasonable it is) then if he doesn't figure out and admit to himself that she is better off where she is once he has settled into a routine and had a chance to live with this new arrangement you can then talk about trying an overnight at home or look into the cost of giving her what she needs at home... If worse comes to worse maybe the doctors will need to step in and put some heavy pressure on him, talk about the need for a social worker or VNA to come evaluate the home and check up on things given her heath issues and their advanced age or simply as a matter of legalities/safety even if you were living with them, whatever might help him accept and realize she needs to stay where she is.

The other option of course is to find a situation that allows them to live together in MC or some sort of IL or AL with that support for her. I know there are those facilities available in some areas anyway that enable spouses to live together with the MC support needed for the one spouse that needs it. I would pigeon hole your siblings who aren't involved enough to understand and or are in some denial, move things along with the assumption they also want mom and dad to be safe and have the best care affordable to them. Simply based on the fact that mom is in a MC facility means she qualifies both mentally/physically and financially so it shouldn't be hard to find valid reasons and substantiate them. Actually that could be another reason for not pulling her out immediately, it might be hard or impossible to get her back into the same place again...

Good luck, I know none of this is easy and my thoughts are with you.

One thing to tell your father that I learned the hard way. When your mother becomes bedridden, and she will at some point, he will not be able to give her the care she will need. I’m 62 with fused vertebrae in my neck, at the time my father became bedridden I had also developed shingles on my shoulder and the length of my arm. I couldn’t move dad nor roll him onto his sides by myself, much less change him when he became wet. It doesn’t sound as if your dad will be able to handle that either.
I would guess he is as you say missing her and feeling as if he has failed her. Let him know that by putting her in the memory unit that he has done it out of love and concern for her, point out how well she is doing, be positive to counteract what your brother is saying. I might also suggest that if he can afford it, to hire some help to do the things he is fretting about not getting done at home in order to let him feel free about the time he spends with your mom. Wishing you the best

He should not bring her home as Alzheimer's only progresses. In God's name, I pray for resolution. Amen.

Thank you all for your advice and support. The part that has been most helpful for me is to recognize that I am not in the control here and that while my love and care for both my parents will never change, I am taking steps to turn over all of the responsibilities of calling and taking to doctors, day care arrangements and transportation and general household duties I had assumed to my siblings who have not been involved. This will help me focus as one responder said on being a daughter and not a care taker and more importantly maybe get my siblings to be involved as of course they pledge they will do at the moment. I will cooperate, and make suggestions, but am making it clear that they are assuming more responsibity.

My parents set up all they wills, POA and assets 20 years ago to plan for this point in time, but the HC POA was designated first as my sister as she is a nurse and they think this means she knows a lot more than she does. She is a day surgery nurse with routines that has seemed to gain little knowledge of Alzheimer’s even though I have been inviting all of them to classes and support groups. They never have time. As it came time to activate the HC POA last week, my Dad, brother and I encouraged her to decline since she is never available, does not return calls, has her own health issues and is dealing with other emotional issues. It became tense to the point of my Dad saying he would write her out of the will if she did not sign off the responsibility, then she cried to my brother that I just want to control everything. I love them, but they all lack courage and the following day when it came time to make a decision, Dad said he just did not want to fight about it. I am used to being the youngest having to act as the oldest most of my live. I had involved the hospital staff from doctors to social workers to try to get them to explain to my family the REAL responsibility my sister will be taking on as HC POA and the REAL level of care Mom needs.

I've spent this past week trying to get Dad to make a list of Pros and Cons about bringing Mom home or not, but my brother is piping in his ear and last night the latest excuse is that there is just too much activity there for Mom. I am trying to measure out my comments and suggestions so as not to be viewing as battling with any of them, but believe me, I make my point.

Dad is resolved as he was from the get go that he just needed a break from Mom. He is not hearing what all the professionals are telling him about the impact of the disruption of moving her back home. He just keeps saying she is not that bad yet and I gently try to remind him of all the comments he makes when she is at home. His truth is that he takes he to the bathroom all the time at home and he does all sorts of activities with her at home. He is my hero for all he has done to care for Mom at home and he used to do activities, but that is already 3 years gone as she has declined and yes, he cleans her up after the fact, and I know he is doing his best and he loves her, and wants her at home, but it was interesting to observe the other part that seems to be going on is that it makes him unhappy to see her doing so well and thriving where she is. There was a music program the other day and Mom was singing and chair dancing and of course it did not help when she said she wanted to run away with the singer! But the look on Dad's face was panic. Like someone said, he does not want to feel that he has failed her, and I can just hope and pray that the others will get more involved and finally get to the reality of the situation.

I really want to thank those of you that encouraged me not to enable them by helping with the move back home. I was all set to do this, but you are right. Thanks for the suggestions about Dad moving in there, but he will never leave his home. I will turn over all my resources to my sister for the programs for Mom and the day care arrangements and take a step back for a minute.

My mom had to go into a nursing home following surgery due to physical limitations and cognitive decline that became evident after surgery. Dad was not pleased with the level of care and thought she should be home. Dad's cooking skills were limited to heating a can of soup. While Dad brought her home, it quickly became apparent that she needed much more care than he could provide at home. Within a few days, she was back at the nursing home.

In your case, you might ask if you can pay to hold the memory care room for a week to see if your dad would quickly realize that she needs to be in the facility.

I've literally just been through this. My dad as the caregiver, Mom has dementia, heart failure, is deaf and cantankerous. Dad wouldn't have any help in the house other than me, and he wouldn't hire any health aides because "she gets so nasty they'd probably quit."

I finally had to just let them do what they wanted and help where needed. Yes, it'll probably kill both of them sooner than later, but at least Mom will have the care she wants from the person she wants it from, and Dad gets to be her hero and do what a spouse is supposed to do.

Well, guess what? My dad -- the healthy parent -- was diagnosed with inoperable cancer and died six weeks later. Just a week before he was diagnosed I was in a financial planning class conducted by a trust and estate attorney, and he said that he estimates 70% of his clients have the healthy one die first because frankly, caregiving can kill a person. I can attest to it.

Now my dad is dead (two months ago), and my mother is in a nursing home. The transition has been very hard on me, as I'm now taking the place of my dad in the guilt category. I'll tell you now -- the first few weeks are the hardest. Try to keep your mom there for a month at least and keep your dad away for several days in a row.

I was trying to see Mom every day at first (I live 90 minutes away -- on a good day), and it was killing me. I finally told myself this was akin to taking my kids to college, so I forced myself to stay away for a few days and not to call constantly. It allowed me to find other things to do that weren't Mom-centric. Your dad needs that, too. All those "things" he doesn't have time to do will get done if he's told he's allowed to not be at your mother's side all day, every day. He needs to find things to keep him busy, and your mom needs to find things to keep herself busy, too. They're still married, they'll still see one another -- it's just different.

Your siblings sound like a pain in the neck. Sorry you have to deal with them, too. You might try to get your dad to get a trust put together rather than just a will. You could be the trustee because nothing the others say will matter. My folks have a trust and both resigned from the trust and allowed me to take over their affairs just before Dad died. The transition has been very smooth, and believe me, it's very helpful to not have to deal with that mess, too. The best thing about being a trustee is that the others can yammer all they want, but the trustee's decisions are the only ones that matter. You sound as if you're the one who truly has your parents' best interests at heart, so you might consult a trust and estate attorney to see what can be done.

Are you really certain she is getting great care at the nursing home? Verify it before you believe it! What evidence does your brother present about her not getting it?