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Looking to move my recently widowed Mom who has EO AD to MC, seeking advice.
Posted: Friday, April 22, 2022 6:28 PM
Joined: 4/22/2022
Posts: 1

My Dad passed away suddenly from a skin infection a little over two months ago leaving behind my Mom (56 y/o) who was diagnosed with EO AD in 2019. I am the oldest of four siblings and have been the one driving the care train for my Mom since the loss of our Dad. My Grandmother (76 y/o) moved my Mom (her daughter) into her home about a month ago and I currently pick my Mom up during the daytime from 9-5. I am 33 y/o with a husband and two little boys  (3y/o and 5 months). 

 These past two months have been nothing short of a traumatic nightmare that exhausts not only my Mom, but my whole family on so many levels. While I am in counseling and making progress to handle my grief and pain, I still feel so lost and alone at times. AD is not easy to witness and I feel incredibly sad for my Mom as I watch her decline - from what I have read, she seems to be somewhere in stage 6 of AD. She needs constant care from showering, to reminders to eat/drink, to getting in and out the car, etc. She does not know who I am most days and usually thinks I am one of her sisters. The only thing that really sticks is that her Husband has recently died and she is now living with her Mom.     

Due to the level of care she needs and seeing her decline even more so after only two and a half months, we have made the decision to move her to a MCF. I know she will function better in a place designed to work with her changing needs. I am struggling with how to present this information to her as in past conversations she is admit that she will not go into "one of those places". She is aware she has AD, but she does not see her condition as a cause for such care. She constantly says it's her body and her life and that she can do what she wants. I have made an appointment with her Neurologist and let them know we'd like to discuss the need for MC. I also have her POA and will most likely need to get guardianship soon.

Just here looking for some support and advice on how to make the transition into MC. I want to show my Mom dignity and respect as much as possible, so I am struggling with the idea of making the decision for her knowing full well she will hate it. She is already so sad from the loss of my Dad.

Posted: Saturday, April 23, 2022 10:48 AM
Joined: 12/15/2021
Posts: 45

Hi ASwallow - Your mom is blessed having you as a caregiver, sounds like you're doing a great job.  As to transitioning to MC, I can share a bit of my experiences with this and my DW who has FTD and in her fifties.  Totally abandoned the idea of explaining, approaching it with my wife as she won't understand anyway, will get confused and very upset.  Understanding the disease, for me was helpful, and since the executive functioning as well as speech and cognition are severely impaired having a conversation was too far gone at this point. Though I care for her now at home, knowing the need for MC placement down the road will happen, I opted to shop around, visit ALFs with MC units to place her for respite care (short term stays) as a way of testing the waters to see how she does.  Fortunately, Medicare picks up our costs for these. Meeting, touring and asking questions and sharing as much as you can with staff about my wife before her stay was helpful.  On the day of respite, I simply got her into the car for a "drive".  Once there, I set her up in her room, staff were ready and prepared, and I had one distract her and I left.   Sounds cold, but for our situation, believe was best option I had.  Your gonna feal guilty, ect., but change of this kind is never easy, but please remember thousands have walked before you on this path, your not alone.  
For my wife, she has about 10 second attention span, so she moves quickly beyond the moment to the present situation so a quick stay and exit was best.  After the visit, I met/talked with MC Administrator, shared ideas on what worked and what didn't and updated our plan for the next visit.  Hopefully, things will improve with each successive visit and the plan is when permanent placement happens my wife (as well as the MC unit that has been working with her) will be in a much better prepared as well as myself.  Good luck, and always remember, your not alone..

Posted: Saturday, April 23, 2022 8:28 PM
Joined: 4/7/2019
Posts: 504

Hi ASwallow -- 

Here's my take/experience -- My sister has early onset Alzheimer's - she's not that much older than your mom) and I placed her in memory care in late October, 2021.

It was a difficult transition, and there were tears and a meltdown. Some people are better, some worse, while making that transition. I think my sister was somewhere in the middle.  She's adapted pretty well at this point, and even told me that she wished she had moved to memory care sooner.  I think it's because the environment is so structured and manageable for her. Home had become overwhelming. She couldn't navigate it, she couldn't find the bathroom, just really basic things.

My sister is in late stage 6 now, she was probably in mid-stage 6 when we moved her.  The way we did it was to have her go to memory care every other afternoon for "activities" for a couple of weeks. We wanted to get her used to it and see that memory care wasn't the bugaboo she thought it was. She was onto me though and knew that taking part in activities  was a precursor to moving her there. She wanted no part of memory care at the time.

I felt horrible about it, but I was the one who made the decision (me and memory care staff). We prepared her room while I had one of her friends distract her outside in the courtyard. I made sure that her favorite clothing was in the closet and drawers, we hung all of the family photos on the walls, etc.  By the time she was ready to come back inside, her new room looked like she'd lived there for years.

Even so, like I said, there was a meltdown. It took probably close to a month before she could see that memory care is a great place for her.  She gets so much more care and attention than I could give her at home (I still work).  And she needs 24/7 care, no question.

I haven't regretted that placing her, and most of my guilt has gone away.

Gig Harbor
Posted: Sunday, April 24, 2022 11:17 PM
Joined: 3/10/2016
Posts: 1161

You could make up a story that her mother has to have some tests done in the hospital so will need to be gone for two weeks. Tell her that you have found a respite situation that will be a really fun place for her to stay. She might actually like the activity. This is another part of her journey through life and you absolutely can’t feel guilty. You can make sure she is fed, clean and warm and cared for. Good luck.