It is just really hard when your wonderful parent isn't happy.
My Mom moved into a very nice AL facility a month ago. She is just not happy there. I don't know that time will make a difference. She was living with my sister and was unhappy there, and looked forward to getting into her own place. As my brother says, her unhappiness is because her brain and body aren't working right and that is going to be true wherever she is. I don't know that I'm looking for advice so much as to just vent and share my unhappiness that my dear mother (who is very sweet and nice) is unhappy and likely to remain so.
For years Mom lived in a MIL apartment by me, and then more recently spent a couple months with my brother and then my sister. The reason for the move out of the MIL apartment was that she developed dementia rather quickly over a few months, and I wasn't able to deal with her increased needs. We are still working through the diagnostics for her (with a top notch Memory and Brain Wellness center at our University), but the preliminary thoughts are that it is vascular dementia. She forgets a lot, and has real trouble planning. But she still is able to understand complex information and discussions. Her dementia has been pretty stable over the last few months (which would match the vascular dementia diagnosis), although she has gotten much more wobbly.
Mom is very private, and it bugs her having people come into her apartment to give her meds, etc. She is also not leaving her apartment to participate in any activities. One downside at this AL is that there are many people who are less "with it" than Mom, so that bothers her. Her thyroid is also low and that could be impacting her mood, cognitive ability and willingness to do things. We are also going to ask her doctor about anti-depressants.
We realize things MIGHT get better with more time. And before considering any changes we need to complete the whole diagnostic part so we have as much information as to diagnosis, prognosis, etc.
She would like to move back in with my sister, in which case we would have to hire full time caretakers while my sister is at work. Mom can mostly be okay by herself, she hasn't shown any tendency to wander. But she does get confused and worried when she is by herself, which seems to increase her dementia, so it is best that somebody be with her most of the time. My sister and husband might consider it, but they haven't discussed it thoroughly. My mom really isn't demanding. But she still might not be happy.
I know from reading this forum a lot, that moving back in with my sister might be a very bad idea. I really want to protect my sister and make sure that if that is an option that is being considered that she have lots of support and help. If it were up to me I would probably say that Mom should stay in AL, and if not this one, then maybe another one.
But mainly I am needing to learn how to live with my mother being unhappy. I like to solve problems, and I think this may be a problem that may not be solvable. She wants life like it was 5 years ago. Even 2 years ago. And that isn't going to happen.
Empathizing, but getting out of "I need to fix this" mode is important for you and your sister. "I'm sorry you're unhappy mom. The docs say you need to be here to get stronger". My own mom always needed to be "at the top of the class".
Make sure that she really needs SO and not simply an Independent Living facility.
My mom did fine with just three meals a day, folks who were more with it and me refilling her med containers once a week.
If you mom can self administer her meds accurately, she might not need AL.
The Brain/Memory center she is going to has psychiatrists and neurologists. Her PCP also specializes in geriatrics, so I think we have all the players on board. But there is still more cognitive testing, etc. to do (there have been waiting lists) . We are hoping that the thyroid will help things, but will also be talking to them about anti-depressants. They are reluctant to start new meds until we have completed the testing, so they know more about what they are working with.
Mom definitely needs help with daily meds. She either forgets to take them, or will take them multiple times. When she lived with us kids we would set out the meds for her and then could verify she took them. With AL they need to SEE her take the meds - which I understand because they are medical professionals and responsible to make sure they are taken. But she hates that sort of hand holding. We have considered one of those automated dispenser units, but I think that might be more than she could deal with now.
But maybe we can find someplace that has people who are more with it, or more options for meds. We will keep considering alternatives, but also work at finding peace with Mom not being content. Darn it, she is a wonderful Mom and person and deserves happiness.
I just spoke to her about a follow up appointment I just made to discuss the results of all the testing, etc (which won't happen until March). and said we will find out more about a diagnosis, etc. She said, "Well, I'm just wearing out". She probably has an accurate a diagnosis as any they will give us :)
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.
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.
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 :)
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.
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.
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 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
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
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!
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.
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.
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.
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.
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!
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.