Mom is in MC but we are still questioning if it was too soon
Please help. We moved our mom from assisted living to memory care (within the same facility) a little over 2 weeks ago. She wasn't functioning great in AL in terms of her ability to engage in activities, go on the errand trips, etc. But she was happy. She would walk around the building, say hello and chat with people and loved her apartment.
We felt really pressured by the staff to move her to MC because she had left the building a few times without signing out (which she acknowledged and wrote herself a reminder note about) and because they noticed she wasn't able to retain the names or information of people in the building, or engage in the games and activities in the same way. There are hygiene things as well- she was wearing the same clothes quite often and we weren't sure if she was bathing. So in many ways, I can see how she is the perfect candidate for MC. But she is so social and chatty and now in memory care, it seems like everyone around her is catatonic, despite us being assured that there are other women similar to her there.
She is so upset, angry, and sad. Her disorientation has increased dramatically (which I know is probably to be expected). We told her that she was moving to another part of the the facility temporarily to get additional medical care for congestive heart failure (which she does have and was in the hospital for in March). She is questioning this- wondering why there isn't more monitoring, wondering if we are lying to her (which good grief we are and it feels so wrong), and she is going stir crazy because she can't go for walks or get outside in the typical way.
She calls and sends emails and tells us that everything they do there is kindergarten games, chair exercises for people who cannot function, and that there is no one to socialize with and that she is caged up there.
We are questioning everything. When we moved her, the staff acknowledged that she is "on the bubble" but told us that it would be better to be proactive. Can anyone else share their experience with a loved one who was still very chatty and social (even if forgetful) and memory care? I am just so devastated by all of this and am second guessing the decision.
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I had to move my mom with dementia to a nursing home from Al (financial reasons). It has been very hard on her to see so many of the residents pretty out of it. She finally has a roommate that is probably about the same place she is (stage 4). This has helped a lot. She still doesn’t understand why she needs to be there and is not happy about it. If they say there are others like her in mc that are on the cusp and still able to chat, can you ask that they introduce your mom to them or seat her next to them at meals. If she is not able to participate in the games offered in Al them the mc activities are probably what she needs. If she has anosognosia is not going to recognize this and probably feel angry and upset that they only offer games a baby would play. While she may not be happy in mc she is safer and probably cleaner. It really does sound like it’s what she needs.
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My mom (88YO) is in MC. She is probably the highest functioning person in her unit. She spends most of her days in her room. She refuses to decorate her room and is packed up so she could leave at a moment's notice - she's been there 10 months. She is miserable. With that said when she was living on her own she was alone most of the time until her aides came. My mom did a brief stint in a lovely AL group home. She lasted only 18 days. During that time her symptoms ramped up (paranoia, delusions, agitation). On the 18th day she eloped three times. The AL do not lock the doors during the day because the residents can enjoy the outdoor spaces and some come and go. We were so disappointed because we thought it was a good fit for her. Only 14 residents, homecooked meals, garden and yard, entertainment, etc. We never thought mom would be exit seeking so we hadn't considered it being a safety hazard at that time. She ended up at a house down the street - the police were involved in the search. She said she heard me calling her and so she was following to see where I was. The AL would not let her stay without being stabilized so we called 911 to have her brought to the hospital be evaluated and medicated. She was released to her MC from there. She was already Medicaid approved so things moved quickly. Fast forward 10 months later and her cognitive function fluctuates. Sometimes she can hold decent conversations and other times she is agitated and lost in her delusions. Mom really misses going outside when she wants to. Her unit is lock down so she only has access to the first floor unless she's with staff. Her charge nurse has taken her outside to the courtyard for a while to water the flowers and plants. She loved it. She can't do it on her own though and she is mad and sad that more of her independence has been taken away. She tried to leave MC three months ago which ended up a crisis and she was brought to the ER to be evaluated by geri-psych. I've read that you have to plan their care based on their worst day, not their best. I try to keep that in mind when I am sad that mom doesn't have more options. Although we try really hard to make her happy, we have to think of her safety first.
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Thank you for the reply; I appreciate your insight. I had to look up the word anosognosia and wow- that hit the nail on the head! The staff said they are trying to facilitate some of that- having her eat meals with others similar but it doesn’t seem to be working. Or at least she tells us it’s all horrible- the staff say they see her chatting and I don’t think she is a reliable narrator right now. It’s still just so hard and I feel so guilty.
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Thank you for sharing your experiences - that all sounds so hard and my heart goes out to you. I appreciated especially your last comment about making sure their care suits their worst days instead of their best days. I just feel like we made this decision that is going to make the last years of her life miserable and it feels awful.
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One of my mom's running "reels" is to tell us how cold and terrible the food is. It is a lovely dining room, which I've eaten at a few times. The food is good. I'm sure it doesn't come out piping hot as they are serving quite a lot of people. I'm also sure it has not met her expectations at times, but it is impossible to know how often, as it is a running "reel" or "loop" that she repeatedly says. She lived many years in the Calif Central Valley where much of our food is grown and the fresh fruit during season is great. I agree, not always so in the SF Bay Area. Once, early in her move, she had strawberries that were "white" inside, and she refused to eat them. I'm sure they were, but not always. During the season, they are quite good, but she only tells us over and over how terrible they are. Once an idea sticks, it doesn't disappear. So although it "hits me hard", I don't take anything she says as true— all with a grain of salt.
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I've had a PWD insist in that very strong parental tone voice -"I'm starving they don't feed me!" while their clothing was a menu board of the food they had just eaten. Their brains can take a past event or a worry and it becomes their current reality. Ask them about it later and they won't remember.
Try Teepa Snow videos on how to acknowledge feelings so she'll feel heard without getting lost on arguing details of events that may not have happened.1 -
I agree, it is important to never, ever argue with the LO, while making note to oneself or this group for the purpose of awareness, these are classic AZ behaviors. My mom has a lifetime of complaining about food and food service at restaurants to the point family members cringed at having to go out with her. So this behavior is an echo of what she has done her entire life. My mom and I get along well (now) that I've employed my own responses of not arguing, and always leading with "yes", or "I agree", or "I understand", or "I'll help take care of that", not matter. It has significantly calmed her down and she feels "heard".
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My MIL was in MC for 3 years. We moved her there based on staff recommendation after a stint in rehab for knee surgery. She definitely had short term memory issues and wasn't capable of living independently anymore. The staff said the memory issues would only progress and it would be easier on her to only have to move once, rather than going to AL and then to MC at some future date. She was always one of the higher functioning residents, participated in many of the daily activities, and never exhibited any concerning behaviors such as attempting to leave.
Fast forward to now. We moved her to a community closer to family a few months ago and the new community suggested we give AL a try. While she is happy to no longer be in a locked unit, I can't say that the move has been a success. She no longer participates in ANY activities because when you're living independently, nobody "makes" you go. She says she'd rather stay in her room and watch tv. In fact, the only time she leaves her room now is for meals. Staff says she does socialize during mealtime, but that's it. I struggle with agreeing that at 93 years old, she's entitled to be a couch potato if she wants to but also think the amount of human interaction she's getting on a daily basis has definitely decreased. She has also fallen more, because there are more eyes telling MC residents to use their walkers than is possible in AL. And yes, personal hygiene has become a concern when it wasn't before. I've started thinking she was actually happier and more cared for in MC.
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Thank you- will check out that resource!
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Thank you for sharing your experience; if anything, it validates that these are impossible decisions to try and make.
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Your point about "once the idea" sticks is so very true. I hate this disease so much.
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So true! I feel like every decision I make is impossible to make and am always questioning my decisions. I love this group and all of their insights
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My mother and father moved to AL last fall due to my mother’s dementia. My father passed away in January after a fall, and was her main caregiver. We tried for eight weeks to keep mom in AL. However, she was completely lost without him, sundowning was terrible, she kept leaving the building looking for dad or her car and the staff monitored worked extra hard monitoring her. I even hired two companions for her. Nothing helped and I got a call from AL on a Saturday that she had to move Monday to MC (holiday weekend) and that I had to either stay with her in AL all weekend or take her to my house as staff couldn’t monitor her enough. So, I stayed in AL with her and moved her into MC that Monday (same community but different building). Hardest thing I’ve ever done. She had declined from a mid stage 4 to mid 5 in the months after my father passed. I did not want her to go to MC and was devastated. She did escape once and tried to exit a few more times but she settled after about a month. She was higher functioning than most of the other residents BUT was much calmer in a quieter and smaller setting and we found a better med mix. AL was just too big and busy for her and her safety was at risk when she would leave the building. Now in MC she does ok when I take her out for a drive and for ice cream. She doesn’t make a fuss going back inside. At first she complained about being in jail but is more content. I will say she has progressed further into her dementia and gets reevaluated end of month. She is sweet to caregivers and one day she may be fine with me leaving and the next day she says she hates living by herself and doesn’t want me to leave. It’s so hard. I still have one companion that visits on days I cannot. Each day is different when I visit. Quite the emotional rollercoaster. She is also starting to need more personal assistance.2
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I lived this nightmare: I had to move my mom from AL to MC in the same facility within 8 months of her moving there. I did everything I could: practically recreated her AL apartment; told her she owned it; visited almost every night. Had my friends visit with me. Nothing worked. She was miserable.
Truthfully? She was already incontinent and struggling with hallucinations, confusing people, totally disoriented. But my mom is highly educated so she had what her neurologist called a lot of cognitive reserve.
the best advice - by far - that I got is: people need to be where they are safe on their worst days, not their best days. Your mom may settle in. Mine ultimately did, although I think her disease also caught up to her. There’s just no easy way to manage this. But my experience is many AL’s simply don’t have the capacity to handle people who have dementia and even some more complex needs. I’m so sorry.But you did the right thing. I have never heard people talk of terrible things happening because of placing someone in too high a level of care, but I have absolutely heard of terrible things happening because sufficient care wasn’t available or in place.
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It was very helpful to read your comments. Thanks. My DW is stage 5/6 age 75 and at home, although MC is likely within 6 months. Her situation sounds somewhat similar to yours. She functions better than most or all of the residents I have seen on tours, although I usually see only about half the residents. Are the "healthier" ones in their rooms or doing something else? She has lost all of her short-term memory and is usually confused and bored because she can't do any of the things she used to do. Mostly watches tv if we aren't out. She is also talkative with strangers. I am afraid she may not like it in the beginning and wonder if I am having her move to MC too soon.
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Your comments resonated with me as I consider when my DW should move to MC. You mentioned most of the MC residents being "catatonic" and the assurance that there are many others there who are more aware. I am concerned about that too. Have you seen those people?
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"At first she complained about being in jail "
My mom has said a million times, "I am living in a very expensive prison" . . . I haven't heard that in awhile, thank goodness, but it is hard to hear.1 -
I mean no disrespect, but picking AL or MC isn't like selecting a good boarding school for a 14 year old [do they offer languages, what sports etc]. The PWD is in their brain and doing that strange time traveling.
Just like they may think you aren't who you really are anymore they may think they are their 1985 self- so don't try to do impossible twists to try to make that happen for them - you can't- its part of the brain's decay.
Sure having a friend helps anyone at any time of life but a PWD will need personal care of an intimate nature and understanding of their brain's behavior. As much as you can select a placement on the experience and tenure of staff , not the grand piano and fancy lobby decor. Try to talk to the on the floor supervisors not just the sales person to gauge how you'd like talking to them about your loved one's status - do they get it.
Accepting that decline will happen is not , I think, a normal human behavior- those guys stayed and died in their caves back when. We want to see improvement and in dementia land that is getting them 24 hour care and the caregiver not burning out too early. Sadly, if our LO doesn't go from something else they will go through stage 7. Without a cure that's the disease.I'd want a place that can handle that stage versus getting tossed out when they really need caregivers who know and like them already. And every place has a changing population but the roadmap is the same.
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Victoriaredux, your comments are harsh but so is Alzheimer's and what it does to our loved ones. Difficult reality is hard to face. While this is a caring community, we can't be as helpful if we believe it will get any easier as the disease progress. Sometimes the truth hurts, but we can't make good care plans based on hope.
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As the original poster, I wanted to provide an update now that we are 3 months in. I definitely feel this was the right choice. It was SO hard the first month or so and don't get me wrong, it is still not easy and we have hard moments. But overall, she has settled into a pretty good routine and there ARE other people on her unit that are talkative, but what I've realized is that she does not make much of an effort and/or she doesn't remember when things do go well and she's engaged in conversations. But she is participating in many of the activities and I think the routine and care from staff has been worth it. Additionally, we hired an agency that provides companionship for the elderly and so now twice a week, they come over and go for a 30 minute walk with her. That has made a huge difference and takes a bit of the stress off of my sisters and I during the week since we are working. Overall, I don't think she's unhappy and I think if we would have waited longer she would have been that much more confused. It feels like a relief to know she is safe even though it makes me sad that she is in memory care. So I guess for the situation we are in, and the fact that she has AD, it feels like it is as okay as it can be, if that makes sense.
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The best we may get is some level of contentment or at least not outright discontent. If you're also happy with her care and the facility then this is a win :)
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Thanks for the update. I’m glad she has settled in. It’s all so hard.
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This sounds like good news for sure. Something that’s “as okay as it can be” counts as a win in my book. I am glad for you all.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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