It feels like there are no good choices

Sarah.B

Hello,

I'm new here. I originally posted in the caregiver group, but I don't think it's very active. I could use some support.

My mother with Alzheimers lives with my 89 yr old father in an Assisted Living facility nearby. She is still full of life. She is the sweetest and most loving mother. We still have a wonderful time together. But, she'd now in the moderate stage and can get it into her head to leave. She mostly thinks she needs to go help her own mother or something along those lines. On top of assisted living, they have to have a 24 hour care or the facility says memory care. Fortunately, they have the means. Then she managed to get by her companion and we lost her for 30 minutes at 4am. Now, they say Memory Care and I just can't. I'm terrified that she will deteriorate and I don't think it's right for her. For my mother, it would be cruel. I imagine that if she was one of my children (and she really is) and had the same some same symptoms, I would never put her in Memory Care.

But, what am I suppose to do? I would bring her home in a heartbeat, but I have teenagers and that wouldn't be good for them. My youngest is only in 7th grade. My husband is amazingly supportive, but I think it's too much to ask.

I wish there were two of me. 

Has anyone successfully brought their parent home while they still have children? Is it possible to make it work?

I am under enormous pressure to put her into memory care. I finally agreed to try. But, before we do try, we are having the porch turned into a bedroom and putting a shower into the bathroom. I told my siblings that I couldn't try unless I knew that I could bring her home if she started deteriorating. 

Anyway, I'm glad to be here.

Sarah

machelriller

Your mom sounds like my dad. He is so sweet and full of life. He’s 78 and physically very healthy.

I moved him into memory care about three weeks ago. It was a really hard decision and I’m still full of doubt. I’m 35 and my partner and I want to have kids of our own, and I couldn’t see a way I could be a new mom and care for my dad at the same time. So we picked memory care.

Its hard to see my lively dad around so many people so much older, frailer, and further along in their dementia. But in my visits, he seems to be doing really well. He is loving activities that I previously thought he would find infantilizing. He seems content and is friendly with a few people. He’s adjusted better than I could have hoped.

But you’re right, there are no good choices. Everything is working out better than I could have hoped, and I’m still full of doubt and sadness. I don’t have any advice to answer your question, just solidarity. Good luck to you making this impossible decision.

Quilting brings calm

If your mom managed to get by an awake caregiver at the AL in the middle of the night… there’s a very real possibility that she will do the same at your house. Is someone going to stay up all night every night with her? What is your house like for someone of her age on her own in the middle of the night? What is your neighborhood like? Could she get into traffic, cornfields, woods or water?

How are your kids going to feel when you can’t go to their events, or even transport them and come back and get them because mom can’t be alone for a few minutes? Never mind about a family weekend away.

People with dementia deteriorate regardless of where they are. I think you are feeling guilty when you have no reason to. The most important thing is to keep her safe. A Locked MC does that.

Have you considered moving both of them into MC… even if you need to move facilities to do so.

Emily 123

Hi,

What are your dad's thoughts on moving her to MC?

If the current choices don't seem viable, then why not research if there are other options nearby that have secured doors? My mom's in an AL/MC that you have to have a keyfob to enter and leave, and the AL and MC residents share the common spaces. Or maybe a care home might be an option? Or asking the facility if your dad can stay in AL and mom could still participate on the AL side during the day?

As others have said, she will progress. That means that she will deteriorate enough to need MC no matter what. You've already recognized that having her home will put a big strain on your family.

M1

I am glad you have agreed to try. She may surprise you and do well in an environment that is geared to her level. I'm not sure i understand why you are so worried that a move will make her deteriorate? This is a progressive disease regardless. Coming to terms with that may help you.

housefinch

I think it’s hard for families to accept that their beloved family members, who look healthy on the outside, are not healthy in their brain. What would truly be cruel, I think, would be for your mom to live in an insufficiently safe environment for her actual level of functioning. You and others think memory care would be cruel because you still see her as an active, vital, healthy participant in life who has some memory issues, maybe? She is telling you with her behavior (elopement) that she can no longer live safely where she is. Please don’t think you can operate a locked memory care ward at your home and still have a life and function well for your mom and your other family members who need you. She is going to deteriorate at memory care because she has a degenerative, progressive, fatal brain disease. Remodeling your house and bringing her home will not stop, slow down, or change that. I’m sorry. This disease truly is heartbreaking and it would be a shame to spend your money and time doing those things instead of maybe using your money and time in therapy working towards acceptance of this heartbreaking reality.

psg712

You are right ... there are no good choices. But where will she be safest, not only now, but a year from now when her capacity is less than it is today? Will she have to make another move?

I know that it is heartbreaking. I am looking at a similar move for my mom, who is not exit-seeking or aggressive, but simply needs more help than she can receive in AL. It is so hard to face her decline, to pack up the books she no longer reads and the music she cannot play. But we will still treasure time together, wherever she is living. I pray the same for you and your mom.

DCCEPEK

My MIL is stage 6 plus. Totally incontinent, eats like a horse, mean as the day is long. My husband and I are doing our very best with in home care but it's not easy.

She's not very verbal unless she's mad and the evenings are horrible until she decides to sleep. Her wandering is contained to childproof house. We have grands that are in and out all the time and that will not change despite her behavior. MC for her isn't an option with language and combative behavior. MIL is legally blind 83. We're both mid 60s and it's not easy. We cry alot, pray often. Getting home health care isn't easy unless you're ready for hospice.

Sad situations we face in older year.

Diana B

Hello Sarah, I sympathize with your situation. I have a Dad who is 93 years old and lives at home. It wasn't until four years ago that he started the excelerated decline. Money is an issue to afford a private assisted living facility. So managing home care is stressful with a combination of part time in home care and family care meaning me.

avieDa921)

Hi Sarah B, my husband has ALZ 6 years now and does not recognize our son, daughter-in-law, 3 grandkids, (2 are teenagers) when they come to visit. I can tell the grandkids feel uncomfortable and don’t know what to say to him. I love seeing my family, but it can be stressful for me when we get together. He is not recognizing me now sometimes, which breaks my heart. I can tell you are a good daughter and want the best for her, but I think your mother living with you and your family will make it very stressful for you & them, especially with her having ALZ. You will be worried who to focus on! She may do well in MC, better than you think! Best to you & your family!