Respite to Permanent AL / MC questions

RobinNicole

Hi all,

I have posted on previously asking about what it would be like when we placed my mom.  Everyone was so helpful. I am very glad we had started the research and I had identified some potential facilities.  We had emergency work needed on her house which was a safety issue.  She could not be there for the work and we moved her into a hotel with my brother until I found a respite room.  We were planning for AL/MC for later this spring but here we are! Now that we are here we know she will not return home.  While it was a fire drill and very hard on her seeing her house damaged and having to move to a hotel - it was a relief to get her into the facility - or as we told her a nicer all inclusive hotel.  There is no fiblet at this point about her house is not safe while work is being done- its fact, but we plan to keep going with that until she hopefully no longer asks.  Or we may have to address it head on later.  For now it is relief to have her eating hot meals, safe with lots of company and activities.  

10 days in and its been mostly good to great.  This morning when her companion came to visit she had a bit of a melt down but she pivoted and went out with the group on an outing.  

It is hard to let go of the management of her care.  I am relieved, but its so strange to not have to refill her prescriptions, fill the boxes, make sure she is eating (more than cookies ).  And trusting that the nurses will let me know if anything is amiss.  I visit a lot and my sons visit and the companion.  So we have eyes on at different times.  And so far it all seems good.  First question is how do you start to unwind the control?  I am so glad but sometimes I wonder- did they get her pills on time?    As this was last minute the respite room is a studio and it happens to be on memory floor.  That was the one they had available.  They had advised we can and will move her when rooms open, but should I care?  And we always thought we would want a one bedroom as she lived in a four bedroom home, but she seems content with the “hotel” and seems to be in the community most of the day and only in the room at night or for a break in the afternoon.  I heard some find the smaller spaces comforting.  

I know I am still involved (I got several calls today confirming permission on outings, billing, that we want to use their pharmacy etc.  but its strange.  Like handing over the care of my child.  As independent as she is  (or was at home) I had taken charge of decisions, financiers etc. while she did her own laundry, cleaning, dressing, etc.).  

Guess I am just asking for how others felt and navigated this part- and things to watch out for and any recommendations.  Relieved and lost at the same time.  Thanks 

harshedbuzz

RobinNicole-

It sounds as if you've had an experience with transition to care that has been a fairly soft landing. That's wonderful. It sounds as if you chose well in terms of a facility.

But I do hear you on getting used to your new role in caregiving with the delegation of the day-to-day hands-on stuff. Many report feeling guilt or regret at not being up to managing care 24/7 at home even if their LO didn't make that possible with a LTC or investments to pay for care. Others feel as though they aren't living up to the standards of care the parent offered them as a child or that they are living the "in sickness and in health" part of their marriage vows. I just felt bad the my dad needed such care and wasn't going to get better.

The whole experience did give me parenting flashbacks. My son was a kid with special needs and touring MCF was pretty much exactly like touring special schools for kids with dyslexia even down to struggling with the rose-tinted glasses that made my own kid seem like one of the more higher functioning ones there. And kitting out his room for the transition to MC was almost exactly like preparing for DS's first sleep-a-away camp right down to the clothing list and sewn in labels. 

Your role has changed but you are still the one overseeing care. Think of it more as being the general contractor on a project- you have hired in the best subs available but still need to coordinate their efforts, to make sure the plan is being followed and help problem-solve when and if there's an issue. Visit often and be her daughter. 

HB

May flowers

I felt many of the same things when we placed my FIL in memory care last year. The role definitely changes - from hands on to overseer. Over time, it brought some relief, but also some different challenges. But I have to say, it was nice being able to visit and just be able to enjoy the time without the caregiving. 

Fairyland

I am trying to get my LO into an AL ASAP because I need to return home in a distant country. I want to stay nearby at first so I can keep an eye, sort out problems etc. And make sure she can use the communication devices which are new to her, meant to be simpler but who knows if she will “bond” with them. Since I simply won’t be able to visit.  

No idea how long that will take, I just want to pull the trigger and let the games begin!

There is one relative who says they will visit but I think they are stressed out with their own issues so I can’t count on that!  I will be grateful if they do visit.

JJ401

While having the house need repairs is not good, making the transition easy is great.

As to moving rooms, if this is what they use for respite, there may be no choice. But, if she is happy in a studio and one becomes available, now you know that a studio will be fine. 

Letting go of control is hard when you have done it for a while. But, it does get easier. She is happy. She is getting good care. You won’t be able to let go instantly. You will be able to let go bit by bit.

RobinNicole

Inevitable bumps in the road have started.  Yesterday mom got out of sorts and thought she needed to be in NYC.  Companion was there visiting and they called me and she helped pivot her- and she went out on a group outing for pizza.  

I just got a call and my mom wants to go home.  Although I reminded her (truthfully) her house is under construction - she said “she knows” but wants to talk to me.  The family is having lunch with her tomorrow so she said she will save what she wanted to say until then.  I know she will forget, but I think the honeymoon is over.  Thanks to this forum I searched on “wanting to go home” and found reminders that “home” could be childhood home, or just a feeling of a safe place.  Also that I should go along with it, “sure. We can plan for that”.  

I will go over the meds - as neuro was going to up them soon in any case - and change my responses to ease the anxiety and agitation.  Would appreciate any other suggestions and reminders.  I share these with the family so we can best navigate this.  Thank you again for this community.  It’s a life line - and I know there are others who have already travelled these roads.  

GothicGremlin

Hi RobinNicole -

This is something that I've grappled with over the last... almost five months now, which is when I placed my sister in memory care.  There were a couple of tantrums at first, but she settled in and has been doing well there.

Her loop isn't "I want to go home", it's more "I want my own place and I want a cat."  The other day though she wanted to go wine tasting (hahahaha, no). 

Not being responsible for the day to day aspects of her care took me awhile to get used to, but I'm very present and have created good lines of communication with staff.  I know Peggy's getting good care - I can see it. I can tell she's been getting her meds, and she's always dressed well.

Peggy herself will often tell me that the people who work there are really nice to her and help her out. The only weird thing is that every time I see her she has a different hair style (styles she'd never wear). But I get it, she still has long blonde hair, and there's a lot they can do with it.

But man, the guilt. I can feel guilty about anything at any time.  I blame it on being raised Catholic.    Part of me feels terrible that I placed her in memory care, the other part of me knows that it was absolutely the best thing I could do for her.  The driver behind the guilt for me is that when we first talked about assisted living and memory care, Peggy was really worried that placing her meant that we wanted to throw her away (and those are her exact words).  I worked long and hard to dispel that fear, and I think I succeeded. But I can't unhear it, so it's always there in the back of my head.

Therapy has helped me a lot. Spending a good amount of time with Peggy in memory care also helps. I've also made friends with her friends, so we're now a small team. Between us we make sure she sees one of us most days, even if the visit is short. I feel good about that.  Building trust with staff and Peggy's friends has all developed over time, since late October, so I've had time to get used to all of the changes.

I guess I'll just add that even though I no longer have the day to day responsibilities for her care, I'm still in charge of her overall care. I set up doctor/dentist appointments, I do her taxes, and all things financial, so there's plenty of work to be done.  The big upside to memory care (for me) is that I get to be her sister again, not her caregiver. That's huge.