Christmas in MC
My mom has been in MC for three months. She has never stopped telling us she wants to leave, it’s been a constant during every discussion and visit. She is approx at the end stage 5. She can still hold conversations (with added delusions and confabulations). She was obsessed with “moving” out by Thanksgiving and is now ramping up for her big exit before Christmas. We have never taken her out of MC because we’ve always been afraid she would have a meltdown when it was time to return. Her MC said we can take her out but they’ve discouraged it because she has been exit seeking. We’ve “blamed” the doctors but she said she spoke to someone in the office who said she could leave. I spoke to the nurse and she said they are not commenting other than it’s up to the doctors. She did ok on Thanksgiving at MC and had visitors. We have told her that we have her waitlisted at an AL facility (fiblet) and that the list is long. This pacifies her for a short time but keeps saying if she stays there much longer she is going to die. She told my sister tonight that if she doesn’t get to visit the family on Christmas she will never speak to us again. I believe that she won’t forget (at first) because she is able to keep negative thoughts in a loop. I feel so guilty that we can’t even entertain the idea of her coming over for a few hours at Christmas now . We have a couple weeks until Christmas and we know she will continue to be upset, maybe even worse so as we get closer. We can only divert and distract so much. Does anyone have any advice or words of encouragement?
Comments
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The goal is to keep her safe. You can’t sacrifice that to attempt to make her happy. Visit her as close to Christmas as possible. Encourage family to do so. She won’t stay mad forever.
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I agree. Part of me wanted to believe that we could withstand a negative visit “to make her happy” (even if temporarily) but the real fallout would happen at her MC facility upon her return. I was going to plan a family lunch visit on Christmas Day at her MC but now I don’t think that’s a good idea.
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I just wanted to say how such I feel for you. Have you talked with her doctor about increasing or adding an anxiety medication.
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Her nurse just told me this week that she has seen some improvement since adding another anxiety med last month. Mom is now leaving her room little by little each day to sit in one of the common areas… which is a big deal for her. I definitively need to speak with the psychiatrist directly in the next day or two to see what the plan of action is in the near future. They meet with mom every Friday. Up until now we mainly speak to the nurse managers on duty regarding her meds. This is so hard. Thank you for your response!
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Yes, this is very hard. I am so sorry.
It does sound as though progress is being made to get the meds in order, and three months isn’t really that long. It can take a PWD much longer to adjust.
Sorry to say, but a home visit would not necessarily make her happy, and might not be remembered anyway—except by you. Another family at my dad’s MC facility told me in detail about taking their PWD home last year; it was such a disaster at every point—for everybody—that they decided to do holidays at the MC from then on.
Sometimes caregivers feel as though it is our responsibility to create some kind of holiday experience for our PWD that is like the old days, when that is just not possible. This awful disease prevents it. But then we feel guilty for “failing” to do something that can’t be done anyway. Please release yourself from that sort of guilt.
Whatever you decide, the people here understand and support you.
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You’re right about feeling the responsibility and guilt. Mom keeps talking about Christmas when in fact her focus is all about leaving, not about the holiday or celebration. We will not take her out for a visit, but we need to decide if she’ll be able to handle a small celebration at MC without a meltdown or if we have to do individual visits on Christmas Day. Thank you so much for the supportive words!
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I made this post on another thread regarding Christmas in MC:
My mother has been in MC for 4 months. She is in early stage 6 with Alz. The "story" we told her when she moved was that she was going for rehab and physical therapy (she loves PT). She was unhappy at first, but because she is very social and extroverted, has come to enjoy the activities and extra attention. She loves the staff, and they love her. She's even made friends with some of the other residents.
Still, when my brother or I visit, she asks when she can go home. We tell her "when the doctor says it's ok" and then redirect her with something that interests her, like family photos. For every visit, I bring my "bag of tricks" that includes family photos, magazines, her favorite treats, etc. to redirect her when needed. Her short term memory is so short, it works. Lately though, her asking to go home has changed to "Can you take me to see my house?". For that, I keep it light and say "Yes, but we'll have to do it another time, because I have a doctor's appointment, it's raining, etc."
We have not taken her out of MC for several reasons. Number 1 is we fear having trouble getting her back in. Secondly, she is nearly 97 years old, still walking but quite frail, and sometimes incontinent. She is a fall risk, and we, her children, are elders ourselves.
We recently attended the memory care Christmas program. It was beautifully done, and we all had a wonderful time. We stayed after it was over and had dinner in the MC with Mom. It was the first visit she never mentioned anything about going home.(!)
Last Christmas, when she was in early stage 5, we had a small family gathering at home with children, grand children, and great grandchildren - about 20 people. Mom enjoyed it, but couldn't follow the multiple conversations. Afterwards she kept asking me "who were all those other people - why were they there?" She thought her great grandchildren were her grandchildren. She couldn't place her actual grandchildren and their spouses who are now in their 30s-40s.
Now she seems to do better with short visits with just 1-3 people at a time, so for the actual holidays we'll rotate the visits and visitors over several days.
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My mom’s cognitive level is higher than the other residents in her unit, so she has not made any friends because most of them cannot communicate as well as her. She loves the activity director (I’ve met her several times) and likes the activity staff. She complains about some of the LNA’s and assistants but I’ve only witnessed positive interactions. Just like you, I bring a bag of tricks every time I go (twice a week). It provides a positive diversion but her diversions are very short lived as she is on a continuous negative loop. We thought she would love having photos but it’s just the opposite. She doesn’t want to keep any photos (not interested in looking at photos either) and refuses any room decorations or personal items on display so it’s less for her to pack when she makes her great escape. My hope is that since we can’t take her out that we can have some sort of “celebration” with her because she will definitely know it’s Christmas. She has a calendar in her room and keeps pointing out how many more days left. We will have to decide if the we will do visits in shifts on Christmas Day or have sit down Christmas lunch for our family (8 of us ) at MC. I don’t think her unit has a holiday party but I’m going to check. I’m glad you had a lovely time at the MC party, it makes me feel a little more optimistic that we can still have some positive experiences.
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I brought dad to my home for Thanksgiving last year because he was still good cognitively and was with it enough to ask about it weekly until the date came. It all went fine but he was so tired so quickly and clearly overwhelmed. Taking her out now could also end up causing stress and confusion even in what was once a familiar environment.
Try bringing the holidays to her and hope for the best.1 -
Last night I went to the MCF where my dad lives for a holiday party, and it was much better than I expected. The residents are primarily Christian and Jewish, so there were Christmas carols and Santa in one part of the building, Hanukkah decorations in another part. Lots of families were there, sometimes one or two people, sometimes a dozen.
I mostly went to make sure my dad would have someone to be with him in all the commotion—and to take him to a quiet place when needed—but I had some nice moments I wasn’t expecting. My dad (who is around stage 6) loved the caroling and sang along. He knew the tunes and the words: even to all four verses of “O Little Town of Bethlehem.” I was surprised and really heartened. He said, “This is wonderful. All your life I have wanted to take you to Bethlehem.”
We had hot chocolate and shook hands with Santa (the MCF handyman), and then Dad was ready for bed. So I took him to his room, and I left.
If the weather is OK on the 25th we’ll have him at our house for lunch—this is still feasible for him—but if that can’t happen, what we’ve already done will feel like enough to me. When I think back to how miserable and even frightening things were at Christmas 2020, 2021, 2022, 2023…the chance to feel moments of peace is a real gift, and a huge change.
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1000 percent relate. Give it time. It’s your guilt wanting to take her home, not necessarily what’s best for her. I did it too.
Mom’s first Xmas in MC I took her home and it was a disaster. She had been there six months, and her disease had progressed. When we got back to MC she said it was a nice first but I wasn’t her daughter. For weeks she thought I was an imposter. Much pain. It was a mistake.
2nd Xmas she had switched MCs, was/is much happier in new one, so I thought she could come home. She couldn’t. We tried. Short visit. Lots of issues. She left after a few hours.
This is now 3rd Xmas in memory care. She came home for Thanksgiving and it was nice, but also because she is now late stage 6, barely mobile, and doesn’t speak much mostly word salad. She’s on hospice. She did love being home. But it was only a feeling. She was ready to go back the next day. She’s fully incontinent so it’s not easy.My advice? Let her get settled. This is a marathon not a sprint. My mom wishes she could live at home with me. But quitting my job and living alone with her, even with an aide, would be a nightmare.
where she is, she is mostly content. She’s not anxious or depressed. Everyone - staff, hospice, chaplain, me - agree. She will als show/tell me when she is, thank god, so I know.Focus on comfort and safety. She’s not alone - you probably didn’t live together before. It will take time for her to adjust, but I’m here to say it can be done and 2 years into memory care, I’m still alive and my mom is too. It’s awful, but actually seems easier on both of us than my friends who had their parent at home. It’s breaking the bank, but for me has been worth it.
Don’t take her home if they say it’s not a good idea, and if you do, level expectations. It’s a marathon not sprint. You can still show her love on the holidays. And my thoughts are with you for a good holiday for you, too.
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Oh my sweet friend, I’m right there with you. Every time we start to leave my mom, she’s like “I want to go with you. I don’t need to stay here”. My dad is taking it the hardest. When I leave her, I tell her we need to go run a few errands and we’ll be back. And she usually is quite happy with that. Because I know in 5-10 minutes, she won’t even we were there. I’ve come to terms with it, but my has not. He thinks she is going to get better. Which makes sad. From my observation with how my dad is leaving her, he says goodbye gives her a kiss. Then he says goodbye again and gives her another kiss. And because she is now upset she tells him she wants to go home, my dad has a very difficult time telling her a little “fibster” as you called it. I’ve tried telling him over and over that just say goodbye ONCE and ONE kiss and tell her you’ll be back in a while. He just can’t.
So I understand what you are going through. Which I wish I had a magical way of dealing with it.
just know you are never alone.1 -
I’m so glad you and your dad were able to enjoy that time together.
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Mom has never lived with us. She has always had mental health issues so it was never considered an option. She lived in her own apartment, then a very short stint in AL (2 weeks) before MC. Initially she would say “I want to leave and stay with you guys” and after repeatedly telling her that I work FT and have kids and cannot give her the care she needs (and our home has way too many stairs), she now says she can live by herself and doesn’t need any assistance. We tell her a fib that she is on waitlists for another AL place but she keeps saying she has to leave now because she doesn’t have much time left and that she will die soon if she stays there. Talk about guilt! Dementia with anxiety is a beast. I’m glad to hear your mom is more settled and does not suffer from depression or anxiety.
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I really feel for your dad (and you). It’s so difficult to have that guilt of leaving someone behind, even if we know it’s the best option. Thank you for the support!
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So many have left great advice. I just wanted to add my thought. I felt guilty for all of the holidays we left my dad in AL on a holiday. We would go see him and then go home and celebrate. It was one day when I was taking him to a doctor appointment and every few minutes he kept asking where we were going and he was silent otherwise. It caused him such anxiety to be out because he no longer knew where we were going. And when we were out he didn’t remember where he was returning to. He too wanted to go home and even asked two days before he passed if we were going home. It was in that drive to the doctor appointment I realized he was no longer able to be out and understand and that all of the commotion of a holiday would probably be more of a curse to him than a blessing.
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This is hard but what helped me was to ask myself truthfully, "Am I doing this for her because in her current state it is really good for her? Or am I doing it so I will feel better or because my idea of how I wish things were rather than how she really is?"
If it is any comfort, many, many people have taken their LOs home or out and the LOs find it extremely stressful or still ask to go home even when they are home.2 -
It took my 91-yo mom nearly 4 or 5 months before she stopped bringing up leaving/going home all together. When she first moved into AL, I dreaded every visit because it was a constant back-and-forth about why she had to stay there, she was going to call a taxi, she was being held prisoner. Gradually it turned to she forgot something important, she needed to check on something, she needed more clothes (and I wouldn't know where to look)…She can be weirdly sharp (her hearing is perfect and she's like a stealthy cat. If she senses her caregivers and I talking about her care, she appears out of nowhere).
A few times I waffled and thought maybe if I took her home, it would satisfy that itch. But a lot of people recommended not doing that. I don't think she would have tried put up a fight about going back to AL…more like the hazard of navigating wood floors, steps, etc. I ended up telling her that, for her to go home, we would have to hire a special nurse aide for safety reasons and that she wouldn't be able to go upstairs anyway because I was "having repairs done" (which was only a partial fiblet since I can't lie to my mom).
Until recently, I would take her out to her favorite restaurant or for a drive every Sunday. Now that it's cold, I told her it could be dangerous because of the cold and/or ice. So I bring her favorite food to her and share photos of my cats, sunsets, or random outdoor photos. (In my heart of hearts, I still would love to take her home "one last time" but I think my motivation might be more for me - I want to feel home the way it was before…even though the last "before' was challenging and stressful (when we were constantly fighting about AL/MC). My heart breaks a little when she mentions she hasn't been out in a long time, but as others have mentioned, I know it's stressful for her (physically especially) and me because I'm constantly watching to make she doesn't fall, have other issues, or gets overwhelmed.
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@pamu wishing you and your family a peaceful holiday. I know how hard this is! I hope everything goes as smoothly as possible for everyone in your family (you, mom, kids, all.).
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Update: Thank you to everyone for your comments and support! I don’t know how it happened but we had a lovely Christmas with mom at MC. I still can’t believe it. Shortly after my initial post mom’s charge nurse had a sit down with her and talked about how she’s staying there over the holidays and that our family was planning something special. That evening I talked to mom myself (again) and said that we are concerned that she would be upset that if we took her out for a couple hours she would not want to return. She explained that she wanted to spend a night or two at her sister’s house (not an option) and that she wanted to visit her great grand daughter to see her Christmas train (which was a gift mom gave her last year). It was explained that wouldn’t be the plan. She was very disappointed but was not overly upset. We ended up reserving one of the lounge rooms privately at the MC for Christmas Day at noon and seven of us went over with Chinese food and gifts. Mom was dressed up and in a great mood. She enjoyed the food and kept looking and talking about her gifts. She was engaged with my niece’s 3 YO daughter and really enjoyed herself. The family left and my sister and I stayed behind to help her bring her things to her room and get her settled. The staff was wonderful and came in several times while we were there and told mom that wanted her to show them her “haul”. She was pleased as punch to show off her stuff. It’s been two days since Christmas and mom was a little tired but still wanted to chat about her things. She still mentioned that she wanted to go to her sister’s house. She doesn’t know it yet but there is a plan for her to visit mom tomorrow (pending health issue). I hope she does.
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Such a great update! Thank you for sharing the good news with us. That is a special day for sure!
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It might be short lived but we’ll take some happiness while we can. Thank you!
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It sounds like you gave your mom a lovely Christmas. Well done you.
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Commonly Used Abbreviations
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