Mom isn't happy at assisted living...

With regards to medications, I bought my father a programmable pill dispenser, expensive but well worth it. No need to worry about over dosing and you can program it for multiple times in a day. Luckily for my dad it’s once a day and I only need to refill it once every 3 weeks.

SadHelpless1, if she is trying to run away, it probably time for her to go to Memory Care. The AL Staff can look at it a lot more professionally and dispassionately than you can. Her unhappiness does not trump her being safe. From what you have described, she is not happy now. ((HUGS))

This sounds just like my mother. She had fallen and had three brain bleeds and before had already been showing signs of dementia. She went from Skilled nursing to AL. I brought her own furniture and items to make her feel more at home. She hates the intrusions. Feels like no one likes her. Won't participate often in activities but complains that no one invites her (although the staff does come and knock to remind her) She thinks everyone is going to kill her or her room is bugged or they're going to steal her stuff. I go twice a week with one day always being out to lunch and shopping. She gets her hair done there once a week. A doctor watches over her and a psychiatrist has recently put her on medication for anxiety and dementia because she tried to run away. I am the only caregiver. I come home heartbroken and sad and always cry. My mom is very unhappy but she can't live at home by herself and I cannot take care of her with her constant paranoia. AL wants to put her in Memory Care but I think she would really be unhappy and more paranoid. Any advice?

I have appreciated all the comments on this thread, so I thought an update was in order:

Mom has been in AL for almost 3 months now. My sister and I both feel she that over the last few weeks she has become more content there. I think she feels at home now in her apartment, surrounded by all her helpers. We are very grateful. So I would agree with a lot of things I read that it can take 2 months to adjust.

Over these months my sister would bring Mom home to her place a night or two, just for a change of scenery and because Mom liked getting out of the AL. The other day she suggested that Mom come with her for a night. Although Mom was originally excited about the idea, when she thought about it she decided she would prefer to stay at the AL, with my sister coming and visiting her there for the afternoon. This is quite a change. We think the thought of packing, changing beds, etc. just didn't appeal to Mom.

During the first 6-8 weeks of this transition time, Mom frequently said she'd prefer to live with one of her kids. My sister, who needs everybody to be happy, was having a hard time saying a definite no, even thought she realized it probably would not work well. At one point I was visiting Mom, who again told me, "I really would like to live with one of my kids". I told her rather casually, "Well, Mom, I think you should probably assume that won't be an option". She has not mentioned living with one of her kids again. Somehow she remembered me saying this, and accepted it, even though she forgets so many things.

Our next big event is a doctor's appointment this week to discuss the results of ALL the neuro-cognitive testing that has been done. I am anticipating a diagnosis of either vascular dementia, or mixed vascular/Alzheimers. Mom will be relieved to be done with all the appointments.

My mother is unhappy no matter what but I think it comes from within and not what is going on around her. She moved into a Senior apt home last year and has not mad the best of it. I think it is the realization that she can’t turn back time.

I forgot to say that her apartment is set up with her familiar furniture, artwork, photographs, and "pretty" things. She seems to be quite happy with the apartment itself.

Thank-you everybody. It helps to have so many people understand and give ideas. We are going to schedule a care meeting with the AL to discuss options (many of which were mentioned here). My sister is getting lots of support from us siblings, saying we do not feel that Mom living with her is the best option. I think she needs to hear that from us, because otherwise she feels terribly guilty.

My Mom doesn't have a history of being negative. She has adapted without complaint to many things in her life, so having her unhappy now is especially hard. A friend visited her today and reported that Mom said she was starting to feel at home and was getting used to things. I hope that is true, although in general she would never complain to people (too private).

And I really agree that Mom is better off adjusting now, while she still has some ability to figure out new things.

My current plan is to schedule my visits to coincide with some fun AL activity, and then persuade (insist?) my Mom go with me so she starts getting used to leaving her apartment. She does go to meals in the dining room, and has met some people that way. It is funny, most people love the food there. But Mom was a superior and adventurous cook, and it doesn't meet her standards much of the time. But by the time she moved out of her apartment she wasn't cooking anyway, so I don't feel too bad about that. It is good food (we often eat there when we visit), there is a variety to choose from, so she really isn't suffering!

I have not read ALL the great information given to you in the previous responses, but let me give you my perspective and info. My 94 year old Mother opted to be moved to an Assisted Living Facility 4 1/2 years ago. We moved her to her own apartment with her own furniture and all. She was apprehensive, but did make a good effort to be with the people around her and to "make" friends. Even tho Mom has vascular dementia, she did try to talk to other people etc. But, she too, found that most of them were worse that she was, but tried to find those who were not. That was at the beginning of her stay. It did not take too long before she said to me that she didn't want to be with "those" people, but that she did like her apartment (no kitchen) cuz she had all her furniture there with her. That comforted her. Speed up to a couple of years later....Mom is friends with a number of people, has gotten into playing bingo regularly and seems to be enjoying being there. Fast forward to now....Mom wants to go home to where she lived with her husband and her kids many years ago. Mom wants to know why nobody calls her or comes to visit. She cries because she thinks that no one loves her or wants her around. Breaks my heart. I am her daughter. Her only other child lives in Arizona with his family. EVERYONE ELSE HAS PASSED. She does have grandchildren, who of course, are busy with their lives and their kids.

So, I guess, what I'm trying to impress on you is that....no matter what you do for your beloved mother, it really doesn't matter. You just need to be with her, call her, take her out, if possible, reassure her that all is well and that it's just dementia playing tricks with her mind should she start getting too confused. Let her know that she is loved and that everyone in the family loves her. My Mom is the last one living of her generation in our family. And I tell her that so that she realizes that there is NO ONE to call her or to visit except for me. And that everything is okay. Just rest assured, that you will have to keep saying that over and over and over again. But it does seems to talk her off the cliff, if you know what I mean.

I hope this response will bolster you to accept those things that are inevitable with dementia patients, and that no matter where your Mom is, you want her to be safe.

Hello Chdottir,
We are in similar situations. We had to place mom in a Senior Care Facility. It was the hardest thing for us to do but in order to keep her safe this was/is the best thing for her. She started forgetting a lot of things, to take her meds, would leave the stove on ALL YEAR ROUND, heaters, losing her purse and much more. They start forgetting little by little then something serious happens and we have to take the necessary actions for their safety. Our mom too was a very independent women and was very hard for her to understand why she had to share her space with someone else. Keep in mind in order for us to get her to feel somewhat comfortable in the Senior care we had to make her believe we had moved into an apartment. No mom is not happy there but just like yours she was not happy when she stayed with me or my sister. So we tried a different approach and my sister and I would rotate weeks and stayed at mom's with her but we started to get over whelmed and stress began to consume us. Having to leave our families to keep mom happy but in actuality she wasn't due to her dementia progressing. All can I say is-it is going to be a tough road at the beginning. You need to be there with her and show her you're it going to leave her alone. Participate in activities with her. Fix her room with curtains she had at home, pictures, decor, make it feel cozy for her. We did all of this for and she feels like she's at my house (We don't challenge it). You and your sister should also join support group meetings. They will help you get through this...God Bless You & will keep you in our prayers.

At Moms AL residents weren't allowed to keep meds in their rooms. Moms meds were ordered thru the ALs pharmacy in blister packs. I feel you should leave Mom where she is. From what you have wrote, I would not leave her alone. The Dementia will only get worse and she will need more care. When Mom was at the AL they brought a man in to live. The poor man just wanted to leave and constantly was trying to leave. I heard an aide say his family waited to long to place him in the AL. Meaning if they had placed him earlier he would have adjusted and may not have wanted to leave all the time. I think he ended up being moved to a place that would have a lock down section. So what I am saying is placing her early maybe better.

Your right about how she wants life like it was 5 years ago. I believe like your brother if she's anything like my mom with dementia she wasn't happy anywhere. She's currently in a nursing home unwillingly. I had to get guardianship. She thinks people steal from her and she's paranoid thinking they want to poison her or kill her also she doesn't take meds right which would help but she refuses them all together now. She's very unhappy there and keeps thinking her sister is coming to get her and she never talks to her sister. I'm like you in that way that I hate she's unhappy too. But she was unhappy wherever she was before too. I know she'd be happier out of there but st this point she would be s danger to herself and she's already been verbally abusive to those around her including me. Told me she never wants to see me again in Dec when I visited her at the home. This is s great home too. They do all kinds of outings and I know she's not mistreated we just need to find peace about it. I don't know if I ever will. But I'm understanding that she does need to be there

I just completed my caregiving journey with my mom in October. She went from IL to AL to a memory care wing. I went through many of the same things you describe. Blackhole said it best - "safe trumps happy". My mom wanted to move back to her hometown, which was 100 miles away. Unfortunately, there was no one left there to do things for her or check on her. After over four years of making the trip about three times each month, she decided to move to my town. As her needs increased, there was no way I could have made that trip as often as needed, particularly in the winter. I am also a "fixer" and it took me a long time to realize that I could not fix this. I finally realized that what she really wanted was to go back forty or fifty years to a time when she was living with my father and raising her family, something no one could do for her.

I think you have already answered your question about moving her back to live with your sister. Instead, maybe you can focus on little changes that might help her to adjust. Does she go to the dining room for meals? Is so, ask if she can be given her meds on the way to meals. Perhaps you can arrange for housekeeping to tidy her apartment while she is at a meal or an activity. When my mom first moved to AL, I visited at mealtime, pulled up a chair at her table and started a conversation. I asked her table mates about their family, where they had worked, where they grew up, and anything else I could think of. With rare exceptions, they were eager to talk. My mom would join the conversation, but was unlikely to start one. If there is an activity that you think your mom would enjoy, see if she would go if you go with her.

One last thought. Although my mom complained to me about not being happy, the staff said she always thanked them for helping her, and told them how happy she was to be living there. I doubted this until I walked in and heard it myself. What you are hearing from your mom may not be what others are hearing.

My ex had to go to assisted living. It took him about 6 months to get over being mad, and a year to start enjoying himself. So, I would say, just hang in there and not take her out.

One funny thing. One of the ladies there thinks people are having a party at her house. My daughter said she used to complain and wish everyone would just go home. Evidently she is ok now with the continuing party at her house, because she goes from table to table in the dining room greeting people like she was the hostess. Because she is a gracious hostess, she says things like, "Doris, how nice you could make it today". Everyone just plays along. LOL.

Chdottir:

There's a lot of sound advice here and not much I can add except to say you could jump through hoops of fire and it's unlikely your mom would be happy. Dementia or not, a lack of contentedness seems to go hand-in-hand with the elderly. There's no fix. You sound like a wonderful, caring daughter, and your mom is lucky to have you! See to her needs; not necessarily her wants. The more you do, the more demanding they get. And whatever you do, don't move her in with the family! I can guarantee one thing with that: everyone will be unhappy!

Oh, Chdottir, your mother and mine could be sisters. My mother went to AL in August, 2014, and she has not, and likely won't, make a full adjustment for many of the reasons you state regarding your mother. She's private, doesn't like people coming in with meds, isn't sociable, and thinks that too many of the other residents are "too old" - my mother is 95 next month, btw. Mom has pretty advanced dementia with extremely limited short term memory - like about a half hour, if we're lucky - so she was unable to continue to live independently due to the increase of needs as you speak to. Other than my husband and our two local daughters (when their schedules permit), I get zero help from either of my two siblings, either financially, physically or emotionally. I wish I could give you more encouraging words, but the odds are your mom, like mine, are not going to be happy again unless they have a real change in outlook. Moving her back to your sister's may sound like a solution, but I think you already know that it is likely to be a stop-gap at best and a real mistake that will have to be undone - again - which will be even more painful for your mother, you and the family in the long term. Sending hugs as I know from personal experience how difficult it is to be in this position.

When my Mother in Law first moved in she had periods when she claimed she was unhappy and wanted to go home.It's a very nice assisted living and they catered to her every need.At the time we would talk to her ,she could never give us a reason why she wanted to leave so we would just tell her to give it time.After a few months she calmed down and now she often tells us how she loves it there.I think often times it is just the change and the realization they are no longer independent never mind that the way they were living before entering AL was no where near being independent.

Dat, Your Mom sounds a lot like mine. Normally a very easy going person and w/out much for complaints. After Dad died, (they were in AL together) she was so lonely, of course. Her and I would become frustrated at her inability to remember, and also at my shorter temper. We finally came to the conclusion that we would brush aside the things we could not change and just be happy with the time we had together. As Mother and Daughter. Mom will never be happy again, the way she was watching kids and grandkids grow up. But because she has such a sweet nature, we can help her be content with how things are!! God Bless You as you do your best for your Mom. And yes, time is a great leveler in some of these things.

I loved Blackhole’s post and wish I could have read it 8 years ago. Mom has passed(last year from dem/alz), now 95 yr old dad, and my sister (she passed from Health problems 4 yrs ago). I’m a fixer also. But that has gotten me to a point of wearing down and out (not thatAnything went terribly wrong but would have made some different decisions and now my dad is so dependent on me that I sort of don’t feel like a daughter but just a caregiver now). My dad lives in IL facility but is in rehab now and getting ready to be released. He needs to go into ASL but wants to “try” IL again. He is very unstable without his walker (which he uses if he’s out of his apt but not in it uses furniture or walls). I think that he thinks this might be it for him if he goes into ASL plus the fact he has a 1 bedroom apt now and will only have a studio apt. He doesn’t want that but I soooo believe that safety trumps a one room studio. We all want our loved ones to be happy and sometimes we have to make or help make unpleasant/undesirable decisions. You have drs and tests in place. Great advice on doing nails or taking out for lunch but not everyday. She has to have a chance to acclimate. They see themselves as much younger and healthier than they are. My mom used to say ......that older woman....or old man and she was their same age! My dad does the same thing and he’s 95! :)) anyway, their brains are not the way they used to be....dementia or not (heck mine isn’t either!). We will be there someday. Sounds like you are on top of this “problem”. Just need to do the best we can. Take care of yourself. Good luck and God Bless

My husband and I feel your circumstances. My mother in law was unable to stay alone due to stroke. She recovered and moved in with us. She was not happy, we even turned a gargage into a cute apartment. She wanted her life back, driving which she could not do anymore the stroke took part of her sight. I spent hours trying to help her be happier. We did everything we could. The fact is life was never going to be the same and she was morning that loss.
My brother in law is now in an AL at 65 yr. old. He has dementia. Needs insulin and has kidney failure. He too is not happy but content as he says he just can't remember why he's there. Doesn't want to interact. Nurses could not be nicer. He has to stay we cannot care for him and I try to find things that may lift his mood, but he doesn't know what that would be just like mom.
I hope you can come to terms with your doing the right thing. Sometimes a phone call, visit, car ride, if they allow small pets that could help. Prayers for you and mom, and all others going through this. Linda

In most AL’s residents have their meals in the AL dining room where they are typically assigned a table. Mealtime is a highlight of the day as residents get to know one another and socialize. Why does your mother have meals in her room? There are many types of AL’s but the apartment set up you describe is the most isolating. The AL’s that have private and semi private rooms may be better for your mother. Residents spend more time in the common areas. These facilities also have activities all day. A monthly schedule is distributed with their newsletter, and there are trips to restaurants and shopping. Residents can spend time in their rooms (with private bathrooms and showers) if they desire. It sounds like your mother’s facility is not a good fit for her.

It took my very private dad 3 months to get used to living in a very nice AL place. At first he refused to go to any of the activities, then he came to look forward to them. He had some ‘happy’ days particularly when thyroid meds were added. That lasted about a year until his dementia and physical illnesses got worse. I know that you are not looking for advice, but I would give it some time at AL. I couldn’t fix a lot of things for my father but I could help manage them for him.

Lots of good advice given so read and read again what they are telling you. It sounds as though your mom is not a very happy person and possibly tends to be on the negative/pessimistic spectrum of personality. I say this because it reminds me of my dad. He too has vascular dementia and when we first moved him to AL from IL two years ago he hated it. But after a couple of months, settled in and said he liked it better than IL. You need to give it time. Now he has just moved to LTC after two years in AL and again is having that difficult adjustment period.
I would love nothing more than for him to be happy but I can’t control his attitude. I do what I can do to be sure he is safe and has all he needs but beyond that it’s up to him. Changing your mom to a new place will likely not change who she is. Also lots of moves are hard on dementia patients. Give it adequate time and talk to the social worker there to see if she can help.
For your sister I would suggest a good book on setting boundaries. For both of you I would suggest this book which helped me tremendously. It’s available on Amazon. Called Learning to Love Hard to Love Parents. By Paul Chavetz. It has many good tips to share in dealing with difficult parents. Please consider reading it..it’s a quick read.
To conclude, I would not move her to IL. You would be surprised how quickly vascular dementia can progress. That would be one more move and then you’d be back in AL later. Just my two cents

Your mom sounds a lot like mine. It took her several weeks to adjust. She is with my dad and they tend to be insular so she doesn’t do activities or much socializing. She’s gotten more or less used to the people coming in to intrude on her privacy, partly because the caregiving is very good and partly because she really does need help with her activities of daily living a lot of the time.

Here is what I want to tell you, I guess: try not to worry about how happy or unhappy she is, because it may or may not get better, but she is safe and that’s what matters. Do things with her that make her feel good: take her out to brunch or coffee, or shopping, or the salon to get her hair & nails done. My mom used to love to go to bookstores and the library so I’d take her there once a week so she could pick out books. Now her eyes don’t let her do much reading, and she gets nervous when she’s away from my dad too long, so instead of taking her out to a salon I go over and paint her nails for her every week. It gives us some time together and it lifts her spirits. Those little things really count.

Mostly, give yourself some credit for taking care of her for as long as you could, seeing the situation clearly, and getting her into a good place. Give her some time to get used to things while you continue with testing and trying meds. Good luck. God bless you and your mom.

“I like to solve problems, and I think this may be a problem that may not be solvable.” Many of us can relate!

And many of us were assigned that role very early in life. By dear old mom and dad.

To make matters worse (?!) for me, troubleshooting and problem-solving is the core of my paid job. I frequently forget to “shut that off” on evenings and weekends.

Let’s cut to the chase: Safe trumps happy. Trained professionals trump frazzled adult children.

There’s SO much emotion injected into all this. And sure, our parents aren’t robots. Every elder has his or her unique personality and life-long preferences. And they HATE the loss of control.

Listen to the good folks who chimed in before me. You have the right idea for mom. She needs AL or memory care.

You need to be the primary info-gatherer for mom’s facility care. Stay on top of all the details and communication. Keep your eye on where mom can go next if her needs “outgrow” her current set-up.

Finances can change over time, too. Keep tabs on who accepts Medicaid and who doesn’t; which care situations are “flat rate” vs nickel-and-dime for every bath aide, bedding change, medication assistance, etc etc. 

This will serve two purposes:
1.) It will scratch your “problem-solver” itch.
2.) You will be equipped to redirect the sibs who turn all “awwww, Mom needs to be with one of us.” (It’s starting already.)

Good intentions + in-home caregiving has “done in” countless adult children. They end up mentally and physically broken. 

At the same time, Mom/Dad’s path EXACTLY is the same — whether they drag their adult child down the chute with them OR whether their medical/assistive needs are addressed by elder-care professionals.

It’s OK to “just” be a daughter. In fact, it’s preferable. Keep that in mind as you game-plan this difficult, heart-wrenching journey.

Big hugs and good luck. Keep coming back here for support.

BarbBrooklyn, Those are some excellent suggestions. I will talk to her about the medication station - that might be an option and I think she would like it better. And carrying the book or magazine, very practical and given that she loves to read would indicate her abilities to others. Although I don't think she really reads books much these days, mostly magazines.

Does the staff not knock before they enter? I'd get mom a nice " Please Knock" sign for her door.

Sometimes you can reframe an experience for someone. " Mom, you have staff", we'd tell my mother. Staff to clean, to deliver laundry, to fix things.

At the AL my mom was briefly in, the clients went to a central medication station for their meds. Can that be arranged?

If mom does want to interact with others, can she carry a book or magazine to read? That always did the trick for us.

Well, Mom has a 1 bedroom apartment at least so she is by herself most of the time. But she needs people to help her (meds mostly at this point), which is an intrusion twice a day. Then there are miscellaneous things that happen (cleaners/laundry, physical therapy, occupational therapy) that all intrude on her space.

I get it completely. I am an introvert also, and would dislike it. A small part of the reason I couldn't have her living in the MIL apartment by me anymore is that SHE would keep intruding on ME multiple times a day, despite me telling her I needed time to myself. I was already checking in with her regularly to give her her meds, making sure she had food to eat and remind her it was there, visit with her, etc. But she would forget, or have a problem (small to large), or just be lonely so in she would come. I was dealing with my own health problems, and personal problems at the time, and that fact that I couldn't rely on having even an hour to myself really got to me.

That wasn't the only reason for the move, but it was part of it. So I understand her dislike of the intrusions!!

Frankly, I think it would be a mistake for her to move in with my sister. Although we don't have a diagnosis yet it seems very unlikely she will be getting better, and likely will be getting worse. Both mentally and physically. I worry about my sister, who sacrifices herself rather than deal with other people being upset or unhappy. If Mom were to move in with my sister, she would definitely be hiring outside help. But that brings about its own problems, including lack of privacy for my sister. And what happens if Mom starts having problems at night?? And on and on.

I am one of six kids, and so far we have been on the same page. Everyone was completely supportive when I said I needed to not be caretaker for Mom any more. We agreed on the AL, etc.

I think I will step back for a lot of the conversation around any decisions about whether Mom will stay in AL or not. I tend to be a decision maker, and organizer, etc. And I really did lead the charge on finding an AL place, although everybody else was in agreement. So at this point as the siblings discuss options I will participate when asked, but I am going to try to take a back seat. I think it is time for me to do that. My other siblings worry about my sister also, so it isn't like anybody is pressuring her to take Mom, and many of us have discouraged her.

At this point I think we are all on board with waiting until diagnosis, etc before making any decisions. This would be in mid-March, by which time things could have changed in a way that makes the decision obvious. Maybe Mom will have settled in better and made some friends. Maybe there will be a health crisis where she has to have more care. Maybe the increase in thyroid will make a huge difference for the better.

I'll just have to wait and see and try not to fuss about it too much. In the meantime I hate that Mom is unhappy and really hope things change for the better for her.

I appreciate everyone's thoughts and input. It helps to have a place to vent. I think my siblings are tired of hearing my opinions on the matter :)

If your mom is "very private," that probably goes a long way to explaining why she isn't happy in AL. And why she wasn't happy living with sister either. But in light of her privacy needs, she has probably decided sister is preferable to AL.

I say this as an introvert myself: too many people around me drains my energy and makes me feel almost like a feral cat.  I'm only 49 and I already know I'd be miserable as all hell living in a group facility.  I need space, privacy, quiet, and solitude.  I absolutely HATE anyone coming into my personal space without at least the symbolism of knocking or asking first. 

Maybe she just needs a more private room/suite.  Alternatively, she would probably be fairly accepting of a home caregiver at sister's, if it was put to her in terms of a choice between that and AL. 

FF is right......Relocating her won’t fix anything. It’s tough watching our folks age and be unhappy. But think of all the poor elders who aren’t cared for like your mom, and mine for that matter. Our moms are lucky in many ways. We can’t fix old age but we can make it caring and humane.

chdottir, your Mom might be "with it" at the moment but that could change with a few months. It is better that she learns her way around the facility now, learn the Staff, and try to make new friends. Don't try to relocate her, that would just accelerate her dementia.

Your Mom isn't happy because she can no longer hop in the car and drive to the mall to have lunch with friends.... most of her friends probably have moved or had passed away.... and the love of her life is gone... bet her hearing isn't as good, neither is her eyesight... and at her age probably food doesn't taste as good, either. Life has become so different, and at her age finding a "new normal" isn't easy.