talking to my spouse about going into a community

JSJ

My name is John and my wife has been diagnosed for almost 6 years.  In the last 6 months the dimentia has really excellerated, I feel she is going into the final stages.  As I read more, I realize I should have had a conversation long ago with her about entry a memory care facility, not sure how to start now.  I have just started interviewing facilities near my home, again probably late.  I know this will sound familiar but I don't want to give up yet on having her at home but I also am realizing the realities of the situation.  

I would appreciate the opportunity to communicate with someone that has gone through the decision concerning a spouse.  Any thoughts will be appreciated.  Thanks

Beachfan

Hi John,

I thought someone would have dropped in by now to offer suggestions for your dilemma.  I don't have any useful suggestions as my DH is in Memory Care almost 6 weeks now, but our arrival at this point was relatively easy.  My DH was an uncomplicated patient, as Alzheimer's patients go.  He didn't wander, was not aggressive or combative, slept all night, his sundowning consisted of harmless pacing and nonsense gibberish, he was continent under my hawk eye supervision.  I expected to keep him at home for as long as possible, hopefully until the end.  About 2 years ago, I began researching MCF's "just in case".  By that time, he was so far progressed into the disease that I was able to take him along to tour facilities and be met by staff.  He was oblivious to where we were and why we were there. Fast forward two years and my kids intervened, insisting on a 30-day trial respite, more for me than for him.  The respite morphed into permanent placement and only now do I realize how much of my own life I sacrificed in caring for him 24/7, 365.  It wasn't that I couldn't do it any longer; I didn't want to do it any longer.  He is 38 miles away; I miss him and visit him at least once a week.  He doesn't know me, the kids or grandkids.  There is no interaction/reaction with him.  I never felt guilty; I just felt defeated.  I know I made the right decision and hope and pray that you and all other caregivers can arrive at a point where you can find peace.  The whole process stinks.  Good luck to you.  

sandwichone123

Hi John, my situation is only about discussing a day program at this point, but one thing I've learned on this forum is that reason doesn't work well, especially if they don't recognize their condition (which most don't). Many people have moved their LO "for testing" or as a "temporary" move while the house has repairs or something like that, or because they (the caregiver) need medical care. Telling your wife it's memory care is unlikely to have a good outcome because she doesn't understand the situation. Framing it as something she can understand is likely to work better.

billS

Hi John, yours is a common topic here and one that I am facing currently. I had been going back and forth trying to decide when the time for placement was right, but the other day my wife almost caught the house on fire. That incident made it clear that our mutual safety was at risk if I did not place her. Thread here: https://www.alzconnected.org/discussion.aspx?g=posts&t=2147559302

Stuck in the middle

John, this isn't something you can really discuss with her.  If she needs memory care, she is beyond being able to participate in the decision.  You will have to choose one and take her there.  

I have had nightmares about being forced to do things like this all my life.  I am sorry you are in this position.

harshedbuzz

JSJ-

I supported (bullied) my mom in the decision and process of placing dad in care. Things had gotten to a point where caregiving was impacting mom's health; I knew I would lose one parent to dementia- I wasn't willing to offer the other up as well. Plus, dad's difficult dementia "personality" and mom's age/exhaustion meant that what care he got at home was not optimal. 

I'd already done the basic research for MCFs- I toured a dozen and had a curated list of 3 top choices to share with mom- there was one closest to her house, another with a well-regarded reputation for more challenging residents and the VA home which has a nice masculine atmosphere with a waitlist. I made appointments at each of these to tour. She picked the closest which was my least favorite- their Medicaid bed memory unit (which she didn't see) was very depressing but odds were dad would be well into stage 7 by the time he'd need that. The DON came and interviewed dad and declined to offer him a spot based on the potential for "behaviors" associated with one of his two dementia diagnoses. We settled on the place with the great reputation which turned out to be perfect for dad.

We did not discuss the move with him. Given the anosognosia which prevented him from appreciating his needs, the lack of empathy for the impact this had on mom and his general poor short-term memory, I didn't see the point. I will say, however, that having the knowledge of what we'd chosen to do weighed very heavily on us both. This period of time before deciding and the move was harder on our hearts than even the early adjustment phase after he'd moved.

Dad needed a check-up and form filled out by his PCP. During the appointment, the doc brought up memory care- if looks could kill, he'd be a dead man- and suggested them moving into "assisted living together" which dad carried on about in the office but quickly forgot. His reaction confirmed my thoughts that discussing this would only upset him- it wasn't as if he could participate in a reasoned decision or understand why the move was necessary.  

The day of the move, I drove him to what I said was "a new doctor" to make sure he was getting all the care he needed. The staff at MC, spirited him off to a snack and activity while mom signed the paperwork. We visited the next day and explained the new doctor wanted him to have extensive rehab and that we picked the nicest private rehab we could find. To that end, we sort of decorated his room like a hotel rather than with familiar stuff from home initially and brought in a few things from home over time. 

The rise home was awful. I was really glad I insisted on driving them, so mom wasn't alone for the ride. I think we had her over for dinner that night as well. It was an adjustment for both. The first week he was angry, and we made it a point to reiterate our story that he needed rehab. It helped to do the visits in the more public areas of the facility rather than the privacy of his room where he'd really let it fly. About 10 days in, he settled down and visits became pleasant. He always commented on how kind the staff were to him. 

HB

Lorita

Hi John,

 I agree with Stuck in the Middle.  This isn't something you need/should discuss with your wife.  If she's going into the final stages the decision is up to you - when you want/need to do it.  Of course, she'd rather stay at home - all of us would in the same situation.  I'm so thankful I never got to that point.  I did have applications in to the State Veterans Home and turned down two or three vacancies.  I don't remember ever discussing it with Charles. 

 I'm sorry you're in this situation.  Hopefully it will turn out that you can keep her at home - if not, the decision is yours.

loveskitties

Hi John,

I understand how much you want to keep her at home and be her caregiver, however, at this stage her health and safety and yours are first priority.  Just consider, if you stretch yourself into ill health...how will your wife be cared for?

I have these discussions with my 97 year old mother who is primary caregiver to dad who is 96 and has dementia.  They have both had great physical health, but my mother cannot understand that she can no longer do all she used to do.  It is like "getting help" is a failure on her part, even though all the family have told her otherwise.

24/7 care is draining on the caregiver both physically and mentally.

Her ability to understand the need for the move is gone.  You will have to make the decision for both of you.  Remember, being relieved of 24/7 caregiving will give you time to be the loving husband who visits.