How do I make the decision to move my Mom?

Rusty39

We just moved my 82yr. old Mother in with my husband and I knowing that she has stage 4-5 dementia. I should have done my research prior to the move because I am just beside myself and have started having small emotional breakdowns myself.
She has been here for only 2.5 months but I may have taken on more than I can manage. She is consistently crying over the smallest things, retreats when my husband gets home, she can't make it to bathroom (commode in bedroom now), can't shower alone, tears her room apart for no reason and refuses to let anyone outside the family help or even come chat with her. I have found myself tied to the house 24/7 because she freaks out if I am gone more than 5-8 minutes.
I want to move her to a full assisted living facility near us, but then my heart hurts thinking about doing it. How can I a make that decision and not feel like I am discarding her when she needs me the most. I am at a loss, loosing sleep every night. Any advise would be greatly appreciated. Thanks for listening.

Shan

Rusty39, welcome to the group, and let me start by assuring you, you are not alone in what you are going through with your mother, even though I’m sure it often feels like you are. I for one have been through an abbreviated version of what you are experiencing with my own 83 year old mother diagnosed with dementia before my sisters and I made the decision to move our mom to MC in December of 2022, moved her into the facility we chose February 2023, and I still have days when I think it’s the best decision we could have made and days where I’m not so sure. How you choose to care for your mom is a very personal decision that only you and your family can make, and she is very lucky to have such a loving daughter willing to take her in and sacrifice your own health and well being, as you worry so much about doing what’s best for her. And the fact that you have been her primary care provider for 2 1/2 months with the level of care she needs is a testament to you and how much you want what is best for your mom. I don’t profess to even try to tell you what is the best decision for you and your mom, but I can share my similar journey to help you decide.

My mom was living in a 55+ community after my dad died because she was very lonely living alone for the first time in her life. In May of 2021, we started noticing concerning memory issues that indicated she was no longer able to live alone without assistance and we received a diagnosis of mild dementia to validate our concerns. Because she was enjoying living on her own, we decided to try a senior care center that offered independent living, assisted living, and memory care. The facility chosen was within 5 miles of my oldest sister who has POA for our mom, and it was her intention to be the primary care provider with the help of the facility. Our mom’s assessment put her at the assisted living level of care and we moved her into her new apartment in November 2021. They allowed her to move in with her small dog, but it soon became clear that because of the dog and the facility’s lack of staff that was willing to care for a resident with a dog, my sister ended up having to take on way more of our mom’s care needs than she had planned. Staff refused to bring our mom meals or meds because of the dog, so those duties fell on her every week day while she tried to still work full time, and weekends she found it was easier to just bring her to her house all day to provide the care the facility promised but didn’t provide. And no, it wasn’t because her dog was big and mean. She has a very docile lap dog that loves everyone, so we were shocked about the staff’s reaction. It wasn’t long before this took its toll on my sister, and I became her respite care, bringing my mom and her dog to my house for 4-5 day weekends to give my sister a break. It was during those weekends that I can completely commiserate with what you are going through with your mom. What you describe is exactly my experience; the crying jags, the inability to entertain herself for even 5 minutes, the angry outbursts if we did something she didn’t like, her refusal to let me go to work even though we brought in a care provider she trusted for a couple hours on week days, the sleep disruption because she would wake up at 1:00, get dressed and pack her suitcase and knock at my door to wake me up because she wanted me to take her home now. She did this every moment of every day and every night she was with me. It was like caring for an infant you could not pacify no matter how hard you tried. By the end of these long weekends with her, I was so emotionally and physically exhausted, I was more than ready to bring her back to her AL apartment, and dreaded the next one before it even began. So the fact that you have been going through this for 2 1/2 months, 24/7, and are considering a new solution is definitely not something you should feel guilty about. From what I went through with my mom during those exhausting weekends at my house, when my sisters and I were deciding what was the next step when the oldest had a break down and couldn’t do what she had been doing anymore, as much as my heart wanted to say I could take Mom in full time, I knew it was not an option unless I closed my business so I could be with her 24-7; I operate my own interior design business and there was no way I could have kept it going if I chose to move her in with us, and we rely on the income it provides. It was a terrible decision to have to make. I, like you, felt it was selfish to even consider placing my mom somewhere other than my home despite the hardships if we chose to care for her in our home, after all, it’s my mom and she sacrificed so much for us when we needed it, and I love her, and she’s been my best friend. After many sleepless nights, months of research, calls to the Alzheimer’s counselor care phone support line, and lots and lots of crying, we made the decision to move her to a MCF near me so I could visit often. I really struggled with the overwhelming thought that we were “putting our mom in a home” and that made us terrible daughters, and to be honest, two months into the decision I still have those lingering doubts. However, the other side to the story is that memory care is providing many positive things she would not get at our house like 24/7 awake care providers, a set routine, a completely safe environment for someone with memory issues, daily activities that reduce her looping and obsessing behaviors, staff highly trained in dementia care to help her through difficulties, and other peers for her to visit with and care about. We were worried that she would look at the residents that were much further along in their dementia journey than she was and be mad at us for putting her in a place like this. However, she actually likes being one of the more independent ones there and she is getting a lot of benefits to her own self worth being able to help those that need more than she does. I think being around her family that has fully functioning brains is difficult for her because she knows there is something wrong with hers even if she won’t admit it. It seems to be comforting for her to be around others like her that she can help. Now, to be honest, it hasn’t been all rainbows and butterflies, and I still have my moments where I question our decision. But I know with this disease nothing is going to be perfect, there are going to be difficulties no matter what path we chose, and we just have to do what we feel is best for everyone involved, including ourselves. Your health and well being is important too: keep reaching out for help and support as you work through this decision. This is a good group with so much guidance and care from others who are going through what we are.

M1

There is a similar thread on the spouse's forum this morning too. No one can tell you exactly when it's time, but if her care is overwhelming you and your family, then yes, it's likely time, and there's no shame or guilt in that. Her safety and care needs--and yours--drive the decisions at this point. I will comment that from what your are describing, your mom may need memory care more than assisted living, but the assessors from the facilities can help you decide that. Rememeber you're not doing this TO her, you're doing it FOR her. But I've been there too, and I know how hard it is.

*Ollie*

This is such a difficult decision and what is right for you may be different than what is right for someone else regardless of the situation. My mom was very against moving out but when her care became 24/7, we just couldn't handle it anymore. Hiring in-home care can be a possible solution but that is a management piece that takes a lot of time as well. Finding the right people and then dealing with the scheduling challenges is a job unto itself.

While I don't necessarily wish we had moved my mom to a MCF sooner, I can see why that would be beneficial. The staff would get a chance to know your mom through the various stages of dementia. Having good relationships with the staff seems a key component to good care. My mom was too far gone to be really known by the staff and I had to help fill in the picture of who she was and what she liked/disliked.

I would also caution against painting a too rosy picture of what it's like in MC. My mom was at a facility that was only for MC and is divided into 4 cottages so the space is not too overwhelming for the residents. I (mostly) feel good about the place we chose and while some of the staff were outstanding, many of them weren't great. For some people it is just a paycheck and the level of care they give is minimal. The staff isn't going to tend to her like you have. I spent a lot of time with my mom in MC before she passed and saw some sad things there, especially after dinner and into the night. Nothing horrible but sad nonetheless. The residents were safe but not given individual attention by the staff at this point of the day. I found I had to be a strong advocate for my mom and while some of the burden was lifted from having her be there and not in our home, it was still a lot of work on my end. Please prepare yourself for this.

BookBuffBex

@Rusty39 It's a tough decision for sure! I moved both my parents into AL in November 2022. In January 2022 my dad had a 'minor' heart attack and I stayed with mom while he was in the hospital. It was 5 days, but that is all it took for me to have an almost complete breakdown. I realized after that experience that I could never be full time caretaker for my parents. I can't take care of them unless I am functional, and I can't be a full time caretaker and still be a functional human beings. Fast forward to November when my dad landed in the hospital again and I refused to stay overnight with mom. I got a few phone calls of my mom trying to guilt me into staying with her. I was there first thing in the morning, spent all day with her usually through dinner, before going home to sleep in my own bed. It's the only thing that kept me sane. It was also at this time that I realized they both needed to be in AL. I had moments of doubt, still do; but whenever those doubts creep in I remind myself that they are safe and where they need to be. You aren't discarding her . . .you are getting her the help she needs that you are unable to provide. You need support, and if that means Assisted Living, that is OK. Good luck!