Wants me near always

Bowerbird · January 23

My husband only wants me with him to care for him - no relatives or caregivers. He wants me around all the time and if I leave the house, he forgets where I am and thinks I am dead, even with reminders from the relative or caregiver with him. He worries the whole time I am gone. I am his everything, which is a lot to carry, but he is a gentle soul and it is hard to watch the anguish.

I am getting ready to place him in memory care soon and I am afraid he will become traumatized without me there with him. I am struggling with the suggestion of not showing up for a week or two right after he is admitted. I do not know how to approach this situation.

Chris20cm · January 23

https://alzconnected.org/discussion/75178/wants-me-near-always

I am in a very similar situation with DW, and I hope someone has some constructive suggestions on how to make the transition. I have consulted many sources, forums, MC Facilities, PCP, family members, Senior Solutions organization, read tons of material, but everyone is apparently stumped. They don't seem to know how to handle the separation anxiety, the paranoia, the temporary hostility. There is little or no creativity offered. I have been ill, but still carry on 24/7 caregiving, but there may come a time that placement is necessary.
You can DM me if you want to discuss.

annie51 · January 23

By the time I placed my DH in memory care, he had moved past the point of asking where I was whenever I was not around. So my experience wasn’t so traumatic for him - he didn’t seem to know what type of place he was in, he just seemed to go with it. I did stay away for a few days on their recommendation and that was hard but they gave me updates on how he was doing as often as I wanted. Mind you, it wasn’t all rosy because they had to call me several times to make med adjustments for his aggressiveness but he did finally settle down. He knew me when I visited but didn’t ask about me when I left.
Maybe you could do a trial stay - DH’s MC allowed a month’s stay before paying the one time “community fee”. If you tried it to see how he does, it might ease your mind a bit.

terei · January 24

Much of this separation behavior is probably caused by anxiety. I would talk to his Dr for medications to ease that.

sandwichone123 · January 24

It's hard when they first arrive, but very soon the people at mc become familiar to them and they begin to build relationships in the way they are able. They learn to trust the people around them. This process is why some recommend that family stay away for a time, so the pwd can build those relationships rather than avoiding staff and other residents in favor of already-familiar faces.

SDianeL · January 24

Welcome Bowerbird, the MC facility helped me get him there and settled in. A nurse and Social Worker were involved. They do this all the time. They suggested that we come for lunch. My daughter went with us. The nurse was at the table and we joined her. My daughter and I both excused ourselves and gave different reasons (phone call, rest room, etc) and we left. It was the most difficult thing I have ever done but was the most compassionate for him. He was upset at first, but the nurse gave him lunch and took him and introduced him to people and had him join an activity. We dropped his things off later that afternoon and left them with the nurse to put in his room. They waited a couple of days and then gave him a phone to call me. He was so glad to hear from me but wasn't angry or upset. He said I did a good job getting his stuff there. ☺️ They recommended I didn't visit for 2 weeks. When I did he was settled in. They recommended that when I visit first to come at lunch and after my visit they recommended that I not say goodbye, just slip out and let the nurse know I was leaving so the nurse could distract him by giving him ice cream for a treat. The guilt is the hardest thing. Just remember you are not doing it to him, you are doing it for him. Dementia did it to him. Keep reminding yourself of why you did it. You will still be his primary caregiver just in a different role. 💜

Bowerbird · January 24

Thank you everyone for your advice. I understand the reasoning and recognize that I too perhaps have separation anxiety. I have not mentioned moving to him, but I am beginning to suspect he knows deep down something is going to happen. I finally decided to tell him (when we get there) that our doctor, whom he likes, has recommended he go there for a while for the care and activities. I don't think telling him that the house needs work or that I am going on vacation will fly with him.

When he was hospitalized in November, I would stay there all day with him and as soon as I left for the evening, he would become agitated, eventually going into delirium. So there is that fear as well.

But, yes the facility said someone would be with him the whole first day and that is good. But he is shy and a loner, not a big people person. One issue at home is not having enough to do, so I am hoping he will participate in the activities.

https://alzconnected.org/discussion/comment/264287#Comment_264287

She said to give him a half dose of Seroquel, but that can cause a bit of delirium sometimes.

harshedbuzz · January 24

@Bowerbird

This is all hard stuff.

My dad was as you describe in terms on only accepting care from mom. It was to the point if I brought him a sandwich he wanted me to take it back to the kitchen and have mom bring it to him. I didn't play along as she needed a break and he couldn't hold the memory for more than a minute.

When his care became such that a facility could provide better than mom could provide we placed in in a good MCF. He was upset and angry for several days, but he soon bonded with staff and considered the facility his home for the time being. We'd told him that he was there on doctor's orders for physical rehab which allowed us to validate his frustration at not being home while reminding him he was getting best care possible.

Dad never really clicked with other residents (he knew they had dementia despite not recognizing his own issues) and didn't participate in any activities beyond live musical programing which he enjoyed a lot.

A MCF won't have all of the same issues a hospital has. My mom, who doesn't have dementia, sometimes develops hospital-induced delirium. The lack of restorative sleep from lights, noise and nursing tasks are not generally an issue in a MCF. Often medications used inpatient also contribute to delirium.

I hope it goes well for you.

HB

Bowerbird · January 24

https://alzconnected.org/discussion/comment/264353#Comment_264353

I really appreciate your post. It feels similar to my situation and is full of insight, especially about the hospital delirium. I've considered the fact that my husband may not click with any residents, but if he comes to enjoy the staff, that is enough for me. And the doctor's orders "ruse" sounds more and more like to way to approach the move, another issue worrying me.

There is so much guilt along this rough road. I know he will get good care, better in some ways than mine, and more stimulation, but the idea that he will spend the rest of his life, however long, in a facility is tough to take.

Thanks for taking the time to comment. It gives me some hope, which I desperately need.

harshedbuzz · January 24

@Bowerbird

When I finally convinced mom it was time, we decided it would be best to just bring him to the facility telling him it was to see a new doctor for a second opinion to make sure he was getting best care. Telling him before hand would have been upsetting for him and likely make the move harder on all of us.

We arrived at snack/matinee time where the activities director swept him off to meet two of the more social residents while shooing us off. We had shared our fiblet with staff so they could go along with it.

But yeah, the week or so heading up to move-in date was some of the most difficult time of my life emotionally. I felt physically ill until he was safely there. And leaving, not to diminish or disrespect your husband, reminded me somewhat of the pain of leaving the vet's office with an empty carrier after opting for euthanasia except multiplied exponentially.

Before the move, I moved dad's clothing and things to the MCF. Since this was presented as a temporary move, I brought new linens and art that made the space look more like a Holiday Inn rather than try to replicate his home. Over time, we brought his favorite throw and some pictures.

I drove my parents there so mom wouldn't be making the drive there or back alone. And then I brought mom to my house for dinner before taking her home. If it would help you, see if there's someone who could meet you in the parking lot after so you don't have that solo drive to an empty house.

HB

Bowerbird · January 25

https://alzconnected.org/discussion/comment/264372#Comment_264372

Thank you for sharing your experience. I too feel physically ill every time I think about all this. I've had to postpone bringing him in, once because of an ER visit and now because of the terrible weather. It feels like it was not meant to be just yet for some reason and just puts off the agonizing inevitable, especially when he says things like "don't leave me." I brought some of his things in earlier, but I am not sure he even notices much of his home surroundings.

Bowerbird · February 4

I brought my DH to the MC yesterday and all went quite smoothly. He was in a calm, quiet, seemingly peaceful mood. I told him we were going out to buy some bagels, but that we had a stop to make before that. He said ok and did not ask any more questions. As we pulled into the MC driveway, I began my little speech about the doctor recommending this place, but he was more interested in looking at the building. Inside they welcomed him and whisked him away, introducing him to another new male resident and showing him his room. I was told he did not want to be in the communal dining room for lunch, so ate in his room. He actually asked for help with toileting, which made me feel hopeful that he understands the staff will assist him.

I will take the seven days off option and then go see him next week, which is already making me nervous, though my heart is broken and I miss him more than I could ever have imagined.

Chance Rider · February 4

I’m glad that things went smoothly when you took him to MC and that he had already asked the staff for assistance.
I hope your anxiety eases during the coming week. As Diane suggested in her post above, remember you did this FOR him not TO him. Thank you for sharing your experience. Sending hugs.

annie51 · February 4

So glad to hear that things went so smoothly. That is step 1! You will feel guilty, broken hearted, lonely…but it does ease up a little over time. Once he settles in and you see the good care he’ll get, you’ll gradually realize it was the best thing for both of you. You’ll never stop missing him but you’ll begin to feel your stress level going down. Keep us posted on how you’re doing.

Bowerbird · February 4

https://alzconnected.org/discussion/comment/265244#Comment_265244

Thank you for your kind words. I did hear today, his first full day, that he became very angry, wanting to know where I was and banging his walker on the floor. He has eaten very little, except for some snacks. So I am, of course, fretting that all is not well, even though I am learning that this is the path it takes to adjustment.

annie51 · February 5

Yes adjustment can take a few weeks sometimes. My DH was getting very aggressive with the caregivers for the first couple of weeks and the facility doctor increased his meds and added some until he was calmer. They have to do this for the safety of the staff. Every time they called me to approve a med adjustment I’d get stressed out and wondered if I did the right thing. After a few weeks though he had just occasional outbursts and adjusted well. Things should calm down after a while for your DH. I’ll pray for you that it does.

KDSG · 12:31AM

My husband is always looking for me. He is still home and I plan on keeping him home for now. He is stage 4/5. If I go out in the yard and gets very anxious saying he can’t find me, if I am taking a shower he is calling me. I always tell him what I am doing but he can’t remember anything. Does anyone else experience this with their loved one?

iowagirl1961 · 2:16AM

https://alzconnected.org/discussion/comment/271443#Comment_271443

you might want to start a new thread with your experience to get more replies, but I definitely experience the same thing with my dh. He is Stage 5/6. Several months ago I could give him a note that said I am taking a shower and that worked. But now he immediately misplaces the note or puts it in his pocket and forgets so I can really only shower when he is in the room. It’s like having a toddler in the house.

Wants me near always

Comments

Commonly Used Abbreviations

Community Guidelines

Categories