Feeling scared, worried and guilty about placing mother with Alzheimer’s in assisted living next week. Any tips to ease move and transition?

My situation is different than yours but I still understand what you are going through. My wife starting showing signs of dementia when she was 60. She will be 71 in June 2019. When she had pneumonia and was hospitalized the doctors realized that she was unable to take care of herself.

All I learned from this is be very careful of the facilities that she is in. I moved my wife four time because I thought that where she was would take care of her. She is now in a residential facility that has the best care. Four patients with two aids 24/7. Unfortunately by putting your love one into a facility dose not relieve you of your responsibility. I visit my wife often every week; different days and different times of day. I don't visit because she does not always remember who I am, but because I remember who she is.

You are doing the right thing. Keep telling yourself "I am doing what is best for my mom". Your feelings are normal. Your feelings will pass in time. Please appreciate your brother. You are fortunate to have a sibling who is helping rather than ghosting or worse yet obstructing. As I write this, you have already moved her in. At this point, help her get oriented. Make frequent visits if possible. Find out about activities and possibly go to one or two with her. She may be confused for a time, be patient. Does the assisted living have a memory care unit attached. If it does, moving to there, which will be necessary sooner than you think, will be easier when it is time. Meanwhile, please take care of yourself. Go do something you enjoy. Indulge yourself. Massage, long walk, whatever gives you pleasure.

MTL1974, thank you for your kind reply to my earlier response. After re-reading your original post, I'll add that it sounds like you and your brother have planned your mom's move well. And I think mid-stage Alzheimer's can be the best time for this move as I've heard and read that waiting until late-stage often makes the adjustment harder (although, thankfully, for my dad it wasn't). Regardless of how well the move is planned, I doubt there's any way to avoid being stressed, worried and nervous, but you really shouldn't feel guilty, as it sounds like this move is in your mom's best interest and, unless I've misunderstood your and your brother's intentions, you're both going to closely monitor her care and continue visiting her frequently -- she's a lucky mom. Best wishes.

Only one suggestion. Tell her she is going to the facility for respite care for a few weeks so you can take a break, or maybe go on vacation. She might be willing to go if she does not think it is for long-term. Once she is there the staff will have the opportunity to help her adjust. If her memory is as bad as you say it is she won't remember when two weeks are up.

Often times individuals with dementia do much better in a facility. They respond very well to routine. If the staff get her on a very regimented schedule she may very well start to thrive.

The fact that you are moving her when she is mid-stage, she has a good chance of making a good adjustment.

Let us know how it goes, good luck!

I just placed as a (caregiver), or suggested to her son, that my client was soon going to get removed out of independent living due to her Alzheimer's Disease.
I was with her many hours of the day, and when I would leave, I would get a call from the son saying she was screaming through the walls. The reality was, she was Bored. She was in independent living with no sense of direction. I created every hour of every day of her life.

I have been around many Assisted Living Facilities as a Private Care Provider and knew of one, where she would fit excellent. The management knew that the son "DID NOT" want her in a memory care locked facility. They are all different, but he is a fireman and said when he hired me two years ago there was no way he would place her there. I volunteered all my time and hours to make sure my client was going to be surrounded by activities and love.

She did not know what was going on. I picked her up very early. The son and daughter got everything and got a pick up, moved it to Aegis Assisted Living in Washington State, and as I was driving back there after spending the day with her and her dog, I said, "I want to show you a really luxury assisted living home that will allow you to keep your dog", then when I drove in, I thought it would go 1 of 2 ways, very good or very bad. She saw her son's truck there and said, what? She became focused that her son that she loves so very much but is not able to see her much was there, then she looked around with those innocent eyes, and said "look how fancy this is". We walked in and they had a picture of her welcoming her and her dog, and my client has been the happiest woman, filled with daily activities, and the best assisted living ever. Why, because I chose as a loving caregiver to put my all into the assistance and support without pay, for her, being a caregiver is also about learning and knowing. With 15 years of experience, I am so happy it worked well.
She is very very happy. I see her less, but still about 10 hours a week. She thinks of me as her only friend, and talks about how all her family and friends disappeared. Weather true or not, I am able to say "mission accomplished" and I know her family has not disappeared, possibly friends, because most friends do, with alzheimer's it is a scary disease, and now yes I work for the son for her but we are "friends for life"

Every situation is different. Trust your gut.

Why are you feeling guilty? She has a serious medical condition that you did not cause and cannot fix. She is doing things that are unacceptable behavior. You seem to have done all you can but you must think of yourself - it is your turn to live. She is not going to stop and be o.k. It is time to put her where she is cared for by trained people so you can live a normal life. You are doing nothing wrong. I don't think I would try to explain much as she will deny it and there will be a battle. I think I would just get her there and give her a short period of time for an adjustment and then visit her. She will get settled and won't remember much of anything. People with Alzheimers and mental conditions and the related horrible behaviors belong in facilities and not in homes where they disrupt the lives of everyone.

Hello
I have experienced exactly what you describe with my mom. I had to move her to a residential care home at age 92. It was a very hard transition because I also had to move her away from my dad who was also aging & unable to handle the physical & emotional needs brought ion by her dementia.

A few things to think about & know

The move will be hard. Your mom won’t be happy & probably mad at you & your brother. She might even say mean things. It’s just her illness talking. Also she will be anxious & maybe afraid. Change is so hard for the elderly, but the dementia compounds it 10 fold.

hopefully the assisted living you’ve chosen (with her) will provide the amount of care she needs now & for the future because her needs will be ever changing. Sounds like she needs lots of help with bathroom needs & grooming. Some assisted living places do that well & some don’t.

If she is unsteady in on her feet at all, make sure she gets assistance with mobility. The last thing you want is for her to fall. At your house someone always had an eye on her. It won’t
be that way most likely.

Most importantly. Give yourself some grace. Truth is you & your brother won’t be able to care for her at home for an extended period of time. It’s exhausting mentally, physically & emotionally. Of course you both love your mom & feeling stressed & guilty are as natural as breathing. It’s a feeling that kinda stays with you even when you no longer care for your loved one at home because she will always be on your mind. But you are absolutely doing the right thing. You will be able to continue being with her without the 24/7 situation.

Just remember...it’s going to get worse before it gets better. Everyone will have to adjust. Also, your mom is going to have good days & bad days no matter where she lives. Hopefully she can connect with one other person that could be a “friend”. If she has friends in the area, maybe they can visit. Know that your mom may not even remember when you visit. I saw my mom almost everyday along with my dad, but most days she didn’t remember our visits.

Get to know the staff at your moms place. Those relationships will be so important for you. Visit at all different times of the day & evening. You can better tell if your mom is getting the care she needs. She should be up & dressed & clean each day & going to the dining room for meals. If she’s in bed extended periods of time or just sitting she’ll develop bed /pressure sores & also get weak. If you can arrange some type of physical therapy, that would be helpful too.

There ares many other things to share but don’t want to sound like I’m preaching. The fact that your mom is sweet (not usual with dementia) is wonderful. The staff & others will love her.

Take me care of yourself. You will need to be healthy & strong going through the stage of parenting your mom. You’ve reversed roles for now.
💕

Op, you have some hard decisions tonmske here and I feel for you.
We are nearing the end of our journey in this.

Whatever you choose, let this be your compass. Safety. And that comes in a variety of forms.

Best to you and your family. Remember to Take care of yourself.

Op, very few of your choices are good.,pick the least bad. Don't let perfect be enemy of good. And th8nk about that.

Again. Best to you and your family.,I know. We know, this is hard. So very hard. Take care.

Oh my gosh, does this sound familiar. At first I told my mom she needed to simplify her life and I reminded her that her doctor said the same. I went through a few moves with her due to me not liking some of the other residents and/ or caregivers. So go to visit at different times, maybe stay with her the first night and understand that these people are trained to care for her, clean her properly and be helpful to her. You can continue your life and join her world when you go to visit how ever often you want. You can put together a photo album with writing to go with each photo so she can look at it and hopefully caregivers will also and will then know kids names, etc. so they can talk to her about what she does remember. May I also suggest that you tell her a little white lie....Mom, this is the place you liked and anyone here will help you with whatever you need or want. And of course that you will be there ...how often you choose to tell her.
Things will be forgotten so there is no reason to worry about what you say except that you don't want to worry her needlessly. PLEASE do not feel bad about this. It's necessary for hers, your brother and your well being. Go visit whenever you want, stay the night, take her special treats...you know your mom better than anyone....you know what will calm her. Good luck and God bless you for caring so much for your mom. I did mine and after 7 years she passed away in January. There were not so good times ...THANK GOD she did not remember.

Something I forgot to mention is that when I talked to my mom about going to assisted living and had taken her there for tea and a talk with the care givers, she had bad dreams about it, though in waking life she didn't remember. She called me in the middle of the night while in her own house and asked me where she was. She was dreaming about being in some horrible institution and thought it was real. So after that I didn't talk to her about it again until it was time to go. Now she really likes where she is and does not remember her own house.

You can no longer have your mother at your home. She must be placed in new living conditions. Don't hold on to guilt, else it makes you faint and ill. You may have to use the fib card from the deck - Let's visit xxxx friend at this AL.

Hi MTL1974:
It has been about 1-1/2 years since we brought Mom to the 'home'. We were lucky to be able to get into a memory care assisted living facility within a mile or her house. She knew what was happening and there were some teary moments for a couple of days while she knew we were looking. It was all a new experience for my wife and I. We had been trying to get her Dr. to understand that something was wrong with her and her behavior, but getting nowhere.
Suddenly, we were given a diagnosis of Frontal-Temporal Lobe Alzheimer's. Along with that was the order that she needed 24/7 supervision. My brother lived at the house with her, but he was working. As soon as he got home at night, she would start calling for him to get her something to eat, etc. He would go out and sleep in his car so he could get some sleep. I'd get out of work and go over there and change her depends/poise and clothes. My brother's answer to changing her was to hand the clothes and 'diapers' to her.
This only lasted about 2 weeks, but we were only lucky enough to get an agency to send us a person for about 5 days. Then they stopped showing up. No notice, just no show. We were desperate by then and even asked for a nursing home where she could go for at least a weekend so we could get some rest. (Who'd have thought you would have problems getting into a nursing home?)
Don't feel badly about getting her into assisted living. Each day is still stressful, so you're only getting rid of one bit of stress. There is still the stress of managing her money to pay for the apartment, keeping her healthy, paying the health care bills, visiting her, trying to find more funding to make her funds last longer. What is going to happen when Mom's money runs out. What are the latest changes in Medicaid going to do when her money runs out.
Right now, probably my biggest worry is when Mom's money runs out and she HAS to go to a nursing home (Medicaid rules)...will she still know us and be bitter about it? Mom likes it where she is at this point in time.
You need to be aware that there will be some 'humorous' moments also. Mom still comments that this lady or that man 'just isn't all there'. Or, she will tell us how mad she was because the helper insisted on climbing up on top of her wall shelf that she keeps her nick-knacks on. She has started out talking about a 'today event' and in the same sentence start talking about events from 20 years ago as if they just happened today. It is making it hard to talk to her sometimes trying to figure out if 'Dad' is her dad or my dad. Or if it's cousin Joe that died or Uncle Joe who died 30 years ago.
It must be hard for my brother at times. If I walk into the room she usually recognizes me right away. If my brother walks in, she thinks it is one of the workers. She will recognize my wife when she walks into the room, but not my brother.
My suggestion is to put a few items on the walls to begin with and add some over time. Make a plan as to where you are going to store seasonal things that you take out of her room to put new ones up. Be very careful as to what you dispose of from her home. If you have a good memory from it, she probably does too and will ask about it at some point. Obviously, you have to be selective.

First of all, NO you are not being selfish and I don't know ANYONE who wants to move into AL or MC (or whatever)! My Mom lived with us for a number of years and was still upset about having to leave her home to come here. When my husband's health deteriorated and I couldn't handle both of them anymore, she was aware enough to understand that and to see my struggle. She could see how difficult it was for me to take them anywhere and try to manage two people in wheelchairs on my own. My brother in California (I'm in Texas) found a wonderful MC in his town and we played up the fact that Mom would be closer to her two sons and some of the grandkids and great grandkids - which she had missed being with me. When the big day came, my brother flew in from CA and we met him in Houston and stayed in a hotel overnight. Mom loved to travel so this was like an adventure to her. The next morning, I got her all ready and they took a non-stop flight and he and his wife got her all settled in the memory care facility and stayed with her for quite awhile. Mom wore Depends daily but was still able to go to the bathroom by herself (my brother's worst fear). He said the worst thing that happened was that she got stuck in the airplane bathroom because she couldn't figure out how to open the door! Thankfully, the transition wasn't too difficult - physically at least - but Mom still wanted to go "home". "Home" changed, depending on how confused she was that day - could be the house she grew up in or the house she and my Dad had their family in. The MC was wonderful with her and found things that she enjoyed so she felt like she was useful. Now, as for the guilt and second thinking your decisions - I STILL struggle with both and Mom passed away in November! I love the suggestions of counseling - I wish I would have done that in the beginning but I was (and still am) taking care of my husband so it wasn't really an option. Good luck and best wishes - it sounds like you are doing a wonderful job and I'm sure your Mom will settle in just fine.

MTL1974, for many months before moving my dad into memory care assisted living, I wrestled with similar misgivings, but finally decided it would be best for both him and me. What worked well for my then 95-year-old dad with late-stage Alzheimer's was that my wife and I prepared his room in memory care while he was at a daycare facility. Then I picked him up and, without offering any explanation then or previously, took him directly to the memory care facility . I ate dinner with him, spent the night with him, ate breakfast with him, and then left him in the middle of an activity he was enjoying with other residents. He thought we had gone to a nice hotel, like we'd done so many times previously, and quickly adapted to his new home.

      I visited him daily for the next 19 months before he died in my arms two months ago. He often said he wanted to go home, but home to him was his childhood home where he thought his mother and father still lived. In his last few months he usually thought I was his dad and that probably helped keep him relatively content.

      What worked well for my late-stage dad may or may not work as well for your mid-stage mom. I know some facilities recommend that families stay away for a few days or weeks, but my dad's facility did not and I'm pretty sure that wouldn't have worked as well for him. You should listen to advice from your mom's prospective facility, but you know your mom better than the facility and you should ultimately do what you think is best.

    A week or so ago, PBS aired and excellent Alzheimer's documentary that focused on the many trials and difficult decisions facing caregivers. It can be seen at https://ideastations.org/AlzCaregiverPerspective.  And as mentioned previously, do join an Alzheimer's support group where you can share your fears and knowledge as well as learn from others.  Best wishes for you, your brother, and your mom in this difficult process.

Sounds like you are doing it perfectly. We had to move my MIL twice, first to Independent then to Assisted. By doing it earlier you are giving her a chance to enjoy the activities.

My MIL did not want to move in but she could no longer live on her own. I think the move was actually harder on my husband and me. The staff will help her adjustment and before you know it, she'll be integrated into the place.

By the second move, she didn't even know she had moved. In both places she has joined activities and keeps busy. Much better than the isolation she had at home.

I know it is hard, but you are protecting her.

If you had not mentioned having a brother, I would say you are speaking about MY mother!  Yes, my mother was diagnosed with moderate Alzheimer's and Dementia at the time the doctor ordered me get a POA in place within a month's time, and to put the house on the market by June, six months down the pike.  I got the POA done within a month, but it took 2 1/2 years to get the house sold--the house she called home for more than 40 years.  A lot of what you describe about your mom was what my mom was doing--and still does!  She has been in Memory Care and AL for 3 1/2 years now.  It is difficult.  I suggest a support group for you to join ( don't wait like I did for more than 3 years to finally do this!) as well batten down the hatches and get ready for the storms that will follow with the guilt, the struggles, the revelations, etc.  Sometimes it will be funny, and sometimes beyond tragic to endure.  Take the help when you can get it, take advice but weigh it before following it through.  Good luck!

It sounds like she has been part of this process, a facility was picked out that "she liked most" she has been hearing right along that this is going to happen at some point and why, it's the safest and best thing for her and her doctor has been driving it all. You have done everything possible to give her ownership of this move and in fact she made the decision not to do it when the doctor "recommended" and wait until the doctor was insisting, she made the choice to wait until there was no more choice about "when". So effectively she chose the place, the time and is now IMHO letting you know her choice is not to participate in the actual move. You and your brother know her best how does she handle anxiety, she has been told she is moving but has forgotten the doctor ordered it how long is she holding on to information about this subject? If it isn't long and it just causes anxiety every time you tell her until she forgets I think she is telling you how to best handle it for her and that the plan you have in place is perfect. You are caring for her so well and even though she will probably be upset when she realizes she has moved if she hasn't already reluctantly gone along with this she probably isn't likely to and not putting her through extra stress or begging to not go seems far more humane to me. But again, you know her. You are doing the right thing, even her doctor is insisting now. You have provided her the ability to stay in her house as long as possible, longer than many can and you have given her as much ownership of this next phase as anyone possible can. I hope my brothers and I have your strength and wisdom as we navigate this progression with our mom. You seem to have it all well covered.

All great comments as usual! We are facing the same with our 91-year old Dad.

I finally came to grips with my own heart's desire to keep him in his own home when I realized that I don't need to tell him that he is "never" coming home. Rather, I plan to tell him that he needs to be there per doctor's orders until X, Y, Z...

In his case, X = walking unassisted for a certain distance, Y = able to go up and down four steps unassisted, Z = able to dress, bathe, etc. to the doctor's standards (mine). Etc. In other words, setting the bar very high but at a place where if he truly does achieve it, I would consider taking him home with home health care services.

In your Mom's case, you already have doctor's orders. Tell her that she must stay until she masters X, Y, and Z - - which might be connected to the shopping, cleaning, cooking, organizing of her own day, personal hygiene, continence, etc.

Best of everything to you and your family. Keep us posted!

I feel so bad for you. I know I will be in your place at some time. I am a nurse and worked for a little while on an Alzheimer’s unit. There was a lot of socializing and most were content. At this point it sounds like you will have to make the decisions. One thing is assisted living places are expensive. Have you considered spending that money on round the clock care for you mom
i don’t think I would do that but it’s a thought. I wouldn’t surprise her I would tell her a few days before that she is going for a few months on a trial and then do it as you said. You may be surprised that she will enjoy it and be okay with staying. It’s worth a try. I would be sure she had visitors besides you for awhile. I hope this helps. This is not an easy road.
Blessings
eloise
if your mom prays be sure to pray with her 🙏🏻

Your situation is nearly identical to mine. My mom HAD to go into a retirement home 4 years ago, it was the right time for her to move. She wasn't really willing to go but I know it was going to be the right place for her to live. I went daily and met other residents and staff. I joined in the activities and meals until she met new friends and became comfortable participating in activities. There were several residents that came forward to help my mom. These ladies were used to being caregivers themselves ( one a nurse the other a teacher).
It's not unusual for our loved ones to complain the most to people that are closest to them. My mom complains a lot to me but is happy and does participate in activities.
I have also become with friends with family members of other residents. It's been great to have friends we let each other know how our parents are.

No set of rules on how to make the transition. Do what feels right at the moment. Sounds like you and brother have planned this move to make it easy as possible on mom.

Mom may find others at the assisted living home who she will consider friends and enjoy. It will take time, months.

If there is a regular "helper" assigned to your mom, a small token of your appreciation will even smooth the way of transition further. We brought fruit to the general station where the CNAs worked.

Remember her safety is important and the supervision at the assisted living home will help.  Once you and brother see how well she is taken care of, the guilt you feel will ease.

The house will be there if the assisted living doesn't work out after a year or so of trial. Don't be prompted to take mom home after a few weeks or months.

Good luck.

Aw MTL, I see so much of what I went through with my Mom in your post. I am so sorry for you that you have to do this.

My situation with my Mom was similar to yours except my Mom became seriously ill with sepsis after an undiagnosed bladder infection that ran rampant through her system. To make a long story short, she ended up after an extended stay in hospital, another extended stay in rehab to regain her strength and then a month long home healthcare trial that ended badly cause she refused to cooperate, realizing for herself that a nursing home was the answer.

Even so, she would forget that we decided this and would have to be reminded, up until the very day.

All I can say to you is try to be with her throughout. I know some people advise staying away for the first couple of weeks to help the person get settled. I personally think that this is a mistake. Be there with her as much as you can in the beginning. Don't force her to participate in things she doesn't feel comfortable participating in. I tried to do this with my Mom and regret it now. Let her do things at her own pace. Help her to maintain as much of her own routine as she safely can while she is there. Get acquainted with the staff cause it helps for future communications. If they feel like they know you and like you they'll be helpful when you need it.

I know this is tough on you but come back here often. There are so many smart, kind people on this site who have far greater advice than I have.

My heart goes out to you.

I just posted a statement similar to yours! Your first paragraph is almost identical to my life with my mother! I feel horrible about thinking of what I need to do. I just can’t bring myself to do it. I don’t even know where to begin. I wish you the best of luck and hope it works out for you both. I will continue to watch for answers on your situation. Peace and blessings

I don't think every ALF accept residents with Alzheimer's. Maybe where you live they do. I'd try to use a facility that has a nursing home on the same campus as their ALF, (so your mom could transition when the time came). Good luck.

You are doing the right thing by following her doctor's orders and what is truly best for her physically and mentally. She may not know this yet, but she (like all of us) do not particularly welcome change and it can be frightening. She will get used to it however and be happier in the long run. Most importantly, she will be safe. If u give her a choice, she will never go. U don't want that because she NEEDS to be where there is medical staff etc. Everything will work out:)

Your plan to set up her room with things she uses and has is a good one. I used that strategy to move two friends of mine--the wife with frontal temporal dementia and the husband with short-term memory problems and unable to process or understand what was happening to his wife. A friend took them out to breakfast in a nearby town and then to have their nails done. While that happened, the movers and I brought their bedroom furniture, pictures on the wall, their television, couch, recliner, tables, and lamp from their den and set up their apartment to look just like home. When they got there and the husband saw his favorite recliner and everything set up like his home, he sat down with a sigh of relief and has been happy ever since. He is still there 4 years later and still happy. He just misses his wife who only lasted another 5 1/2 months before passing. I was/am grateful I found a place that provided good care for them and good advice for me on what was happening.with the wife's decline. I hope you are as successful with your move and the care there!

It is unlikely that the person being placed will be happy about the placement, but yes, assisted living is appropriate for early or for middle stages and in fact a good time to enter and get acclimated. Often the adjustment and the finding of friends works best at this stage. My brother is in assisted living for beginning stages due to living in a city where I do not live, and where there is little support. He is doing well, but we spoke to people there who are running the place and guilt is what they deal with 24/7. Get their support, speak to a social worker. Know that you are not making a decision that will lead to the "ideal" but one that will become increasingly necessary and is the best that can be done in trying circumstances. Admit to yourself that you are not the martyr that many Saints were, that you are not up for Sainthood, and that while you may be heartily sorry for not being perfect, you can accept not being perfect, and will be as good as you can in the circumstances. And yes, I would tell her. She has a right to be grieving what is going to happen. She has a right to unhappiness, a right to say her piece no matter it is easy to hear or not. Just acknowledge her feelings and express your own grief that this is how it must be.

MTL1974, I'm so glad that you have made arrangements to get her more help. Her doctor seems to believe that it is really needed. I would ask you if the doctor or someone who is authorized to perform assessments has conducted one for her to see just what level of care she needs? The reason that is important, is that while AL can offer a lot of care and support for people who have dementia, sometimes, the needs of a person with significant dementia are better met in a Memory Care facility? Do you know if the AL your mother is going has a wing with that option? I'd inquire about it. I know that when I placed my LO into AL it seemed fine, but, she quickly began to need more care as she resisted care, refused to get out of bed, became bladder incontinent, refused food, etc. and they felt she needed more than than a regular AL. So, we moved her to MC and saw a great improvement. Just something to consider. I hope things work out well for you and your mother.

NO you are not being selfish, you are doing the very best for her and with the support and agreement of her Dr. She may find it strange at first - go back and imagine the day you left your child at the school for the first time, or nursery - whatever - in a week it will be normal to her, she will know the stuff around her, and be far more settled than you will be. Prepare yourself for a negative reaction but don't feel guilty it won't last and she really will be safer and you will have more energy to cope when you visit.

Sorry for all you are going through. I went through the same with my Mom. Don't tell her what's going on. Just say everyone is trying to make her feel better. My mom was in long term care with dementia for 14 months and barely talked to us because we put her there. She couldn't live alone, we had no choice. There's never a good answer to these problems. Don't feel guilty, you're doing the best you can. Peace to you.