How to make the move from home to a facility.

MarDel0917

Hi i am 39yo caring for my bf who is 45yo EOA. He has speech aphasia and i can understand him. The dr say he is stage 6 transitioning to stage 7. He is fully in depends now and sometimes tells me when he has to pee. He recently in the evenings (sundowning) has been saying "i need to go to school" i say he can go in the morning. Sometimes he gets angry. He can be verbally abusive at times also which i let roll off my back. We do have 45 hours of in home caregiver who is here while I'm at work. However he doesn't take him out cause it can be hard to manage him to get him back in or he "knows everybody he sees"

My question is and his mom and my parents have said it's time to find a facility to put him in. Somewhere where they can have him involved in activities. That scares me so much as he still recognizes me and family. I feel that he may feel like he is being abandoned and HATE me. Will I still get to take him to his moms on weekends here and there. Will he want to go back to the facility? Are they going to take care of him fully and well. I dont want them to just drug him up.

How have you done the transition from home to a facility?

We are all in this together 💜

LindaLouise

I had to place my DH in a MC facility due to not sleeping, wandering, and delusions. It was the hardest thing I ever did - broke my heart and I'm still reeling after 9 months. It is not easy - BUT he is much calmer with all the activities, doors that open (ours had to be locked) to outside areas (safe courtyard!) and people to talk to that don't look askance at his nonsensical comments. I can still take him out for lunch or to visit family and he is never over drugged - he is actually better as they have helped him sleep at night and the routine in the MC is very soothing, compared to the routine in our house with grandkids dropping in, picking up kiddos after school, repair people coming in, and helping care for my 93 year old mom. Oddly, he doesn't usually want to leave to go out, so there is that to consider. The fact that the staff are on shifts and not exhausted is also a plus. I'm grateful that I have been able to sleep after several sleepless years. However, living alone after being married for 47 years is unbelievably sad and hard. No way around that, but what we were doing was not working. Lots of thoughts and feelings about doing this, but ultimately you need to do what we can to survive and care for your LO.

SDianeL

many have blamed the doctor. Or make up a fib that you need to go in the hospital and he needs to stay there until you get home. Wait 2 weeks to visit. If he asks to go home tell him when the doctor says so. Then change the subject or distract with a treat. Make sure the caregivers know it’s a fib so they can reinforce it. Although he knows you he probably doesn’t understand days and times which will help with the transition. If he has anxiety and aggression he needs to be on medication. They will manage it. Remember you are doing this for him, not to him. You will continue to make sure he is well cared for. Hugs. 💜

harshedbuzz

@MarDel0917

I am sorry you find yourself at this point of progression and at so very young an age.

Are you the DPOA or does one of his parents fill that role? The DPOA is the ultimate decision maker in this situation. It's likely your parents are concerned for the toll this relentless caregiving is taking on you. It could be his parents feel his need to be socially engaged could be better met in a facility.

I fail to understand why being able to recognize family is considered criteria for placement (not a dis towards you, lots of folks say this). I think it's a positive that he would know the people who are his advocates and regular visitors as he settles into his new community. I can't imagine how hard it would be to support someone in the transition to a MC community if they didn't know and trust you.

He probably will be angry initially. You may even be a trigger for a couple of weeks. But he will be in a purposed built setting with a well-rested team of trained professionals, and you will be able to slip back into the role of girlfriend. My mom was a devoted caregiver, but he more readily accepted care from the aides at the MCF and as a result he got better care in terms of hygiene, medication, food/hydration than he did at home. Home isn't always best.

If he tends towards agitation and aggression, it is likely he will need medication if caregiving strategies aren't enough to tamp down his anxiety. He might benefit from that now. He will not be sedated or chemically restrained.

Your descriptions of his outgoing personality suggest that group living with dementia-informed programing could be a nice fit for him. My aunt absolutely blossomed in MC with the social interaction, entertainment, and failure-free activities.

Whether you can take him out for weekends will be dependent on how he settles in and whether visits are triggering for him. Some people do this regularly; there was a lady at dad's MCF whose daughter placed her for 4 months each winter to travel to Florida for the winter. Mom was agitated by travel but was familiar and content at the facility. We didn't take dad out initially, but about 2 months into his stay he had an appointment, and we offered to go out for lunch and he declined wanting to "go home" which was the facility in his mind.

HB

MarDel0917

https://alzconnected.org/discussion/comment/237952#Comment_237952

Yes I do have DPOA and Guardianship. He is on medication for aggression. I know he will be mad and feel some type of abandonment which breaks my heart. He has been theiugh so much in his life. I have been his one positive constant for the last 6 years.

MarDel0917

You line of "im doing this for him, not to him" those words have been echoing in my mind all day. I appreciate them

Mint

Sorry you are having to deal with this.

I was on this journey a few months ago. The case manager at the hospital suggested a company called CarePatrol. To find out if there is a franchise in your area simply google CarePatrol and then enter your ZIP Code and you can find out if this is available in your area.

Care patrol works like an insurance agent. You will not pay them any sort of fees they are paid by the companies who use them.. For me they made the process much simpler as they new what was available, they knew how it worked, set up appointments, went with us but did not interfere in any way. They were just a great resource. They were just extremely helpful in my case. Also know they will help you even with getting the person there. For example, I know one person they invited him out to eat and took him actually to the facility and had a meal and he never left. They will definitely be with you through every step of the way

My mother was placed against her wishes and I thought it might not go very well. My mother quickly adjusted and she’s just back in her delusional world, but now her delusional world is her assisted living, she thinks she owns it. She’s very happy there and I think sort of grateful for the people there that take care of her. The challenges had caused a lot of non-contact with her by other family members at home. That is all gone now and I’m so thankful for that. She’s getting to see people now that she hasn’t seen for a long time and I now can be her daughter instead of her target for her delusions.

I hope things work out well for you and him