Turning Corners and Crossing Bridges

CindyBum

Belated Happy Thanksgiving, y’all! I remain so grateful for this group, the life I’ve had with my DW, and even for parts of the life I still have with her.

With that, the holiday was difficult as she turned another corner. Her stepdaughter and family were here, which was so nice on one hand. On the other, my DW asked me who was visiting us. She raised her stepdaughter from 3years-18years. She’s been a wonderful part of our lives. Just another heartbreak on this awful journey. I would sob, but either I’m getting used to these hard changes, or my antidepressants are really working! Ha! Probably both.

I’m sure it’ll hit me harder when she forgets me. She does call me “mom” now and again and quickly corrects. I take that as a complement. She loves no one more in this world than her mom. And no one made her feel so loved.

This all reminds me that I will have a very difficult bridge to cross pretty soon. In home care if I can get it arranged or placement.

For those that have crossed that bridge; What do you wish you had thought of or done in preparing and finding a good place for your LO?

BPS

I looked at several MC facilities and most looked like they were doing a good job. The bigger ones had more resources so they were able to offer more activities. I choose a smaller one because I think my wife would be lost most of the time in a larger place. There is staff to help them get to and from their rooms, but I felt like she would be more comfortable in a smaller setting. The smaller facilities have activities, but just not as much and my wife doesn't want to do many of them anyway.

mrahope

I would say, plan ahead and look at your options before you need them. I waited until it was an almost unbearable situation and perhaps could have done better with more time. Despite that, DH has adapted reasonably well and seems to be getting good care.

harshedbuzz

@CindyBum

Mom was dad's primary caregiver, but I toured MCFs as part of my Plan B planning as I wasn't certain she'd outlive him. I got recommendations from folks in my local support group, looked at CMS ratings and toured. I found dropping in for tours offered a fairly accurate sense of a typical day.

After touring a dozen, I began to get a sense of where dad might fit. He wasn't the sort of pleasantly befuddled but well-dressed grandpa type, so we avoided the fancier places that cherrypicked residents. We avoided looking at places that didn't accept Medicaid should he need it in 2-3 years. I looked to see interactions between the hands-on aides and different residents, at meal quality and whether the scheduled activities actually happened.

If you don't have time to devote to this, might her stepdaughter be able to do this and come up with a shortlist for you to tour. I took mom to my top 3. My first choice had too long a wait list and her first choice didn't accept dad into their community so he ended up at a highly recommended MCF that was a 2nd choice for us both. They were awesome with dad.

HB

Crkddy

I have been looking a few months now and have picked out a primary and a back-up. I am now on waiting lists for both. First impressions mean a lot to me. You can tell almost instantly if a facility is well run by the way a place looks, what the staff is doing, and what the population is doing. I also value a smaller facility - they just seem a lot calmer, though that can be based upon the population at any given time. Everyone's situation is unique. Recommend you tour enough places to get a good sense of what you like and don't like. If it's a MC facility, make sure to ask if your loved one can remain there until the end, or if they force a move to a skilled nursing facility.

Traveler18

First, a huge thank you to all that have commented on this post. I am in the midst of this process right now and have leveraged your insights! My DH is somewhere in about stage 6 FTD Bv (early onset) with anosognosia and I know from helping support my mom (who went through all of the aging support stages from driving herself to passing in 6 months) that you need to plan for the next step while things are still relatively calm in your current stage. I just introduced some in-home respite care. I have two people who each come in one day a week in the morning from 9-noon (his "busier" time of day). I introduced them as helpers for us so that I can get some things taken care of and so we have people familiar with the house if I get sick. I did have breast cancer last year (fortunately early stage so no chemo) so this is real. He loves their company.

I am very fortunate in that there are about 10 MC facilities within 8 miles of our house. I picked the top 6 to view (based on online feedback, what I hear from others in the community, experiences I may have had in the past). I am using the respite care to look at the facilities. I put together a list of questions and have refined them as I go. I am sharing them in the attached if you want a jump-start. Refine them to fit your needs.

On the parking reference, I had two practical needs - one is if you want a dedicated spot (especially underground in adverse weather) when you visit. In my case, my husband was an avid motorcyclist and is very uncomfortable if his bikes aren't near him (the car our son uses to get to high school sits out in the driveway during MN winter because DH won't let the bikes move to storage). I am assuming that it may ease his transition if he can go visit the bikes on site (and it is cheaper than a storage garage for them!). Or, he could be so far gone by the time I move him that he won't know and I won't have that need. We'll see!

My challenge is figuring out what the trigger point is to actually make the move. It often comes after a hospitalization or an incident. My DH is healthy as a horse so unlikely to have that trigger point. He has no idea that I am looking at facilities since, of course, there is "nothing wrong with me." Not sure how to define my threshold for when to say, this is it - when our name comes up next on the waiting list, we'll take it! My guess is the level of incontinence becomes more than I can manage with him. He has a strong control/oppositional streak with me so when I can't convince him to help manage it, it will be time. Just have to make sure he isn't a "behaviorial" problem at the MC location or they will move him on too. Interested in any input on this aspect of the move! Let me know if you have other suggestions when reviewing facilities.

Care Faciility Questions.docx

Russinator

Very good questions. Thank you

Quilting brings calm

There are no MC facilities near me with underground parking facilities. I doubt that MC facilities here have dedicated parking for residents. Residents in MCs here would not be driving, nor would the MC want them to have vehicles nearby if they managed to elope from the facility. It’s possible that a spouse might move in with them and be driving.

Unless you have a great deal of money, the best use for the motorcycles after he goes to an MC is to sell them and use the proceeds for his care.

Traveler18

https://alzconnected.org/discussion/comment/230507#Comment_230507

I would sell them now, but my goal is to minimize conflict and that would maximize it. He has few passions and that is his main love, so it doesn't hurt me to keep them close so that he still feels that tie. It brings him many good memories and he still thinks he is heading to Glacier on a ride. I am not going to burst that bubble. The time will come, no need to rush it.