Hi, my husband recently entered a memory care facility and as expected I am having a terrible time. I was hoping to get some input on a couple of different situations.
First, going to visit him almost kills me every time. He still knows who I am and as our visits progress he becomes more aware of our relationship. He can even still say "I love you" sometimes. Although he is usually very upset when I leave, from the reports I get he does seem to adjust after I'm gone. I'm wondering if it makes sense for me to go visit at all, or at least not very often. I want to go see him; I miss him so much and want to see him and be with him but I don't want to upset the careful balance that exists for him at the facility.
Second, since moving into the facility he has started to become violent and aggressive towards the other residents. Not long after he moved in, he had to be hospitalized for three days while his meds were adjusted. Since he's been back at the facility his anti-anxiety doses have had to be raised several times and he is now also getting a sleeping pill. Even so, he doesn't always sleep through the night. I'm wondering if anyone else has had a similar experience with all the medications. I realize they are necessary so he doesn't become combative, but he is so out of it all of the time now. He even fell asleep while eating lunch the other day.
It is all so hopeless and watching him have to go through all of this feels like more than I can bear at times. My heart is so thoroughly broken and I am so, so lonely without him.
No experience personally but from what others have said over the years, it sounds like one: he is over medicated; two: they might have him on the wrong meds. Could be the anger is partly due to his frustration and feelings for being there.
As for visiting - only you can decide which is best for you. Maybe when it is time to leave, the him you have to use the bathroom or have to go ask the nurses something vs saying goodbye. Glad to hear he does settle down after a while.
Pamwiebe, thanks for sharing your comments. My husband just moved from ALF to NH. I too am having a very difficult time visiting. He has declined a lot in just 2 weeks and it breaks my heart. I do understand what you r going through. Altho he is not violent the main issue is he is still walking mostly shuffling and urinating wherever he pleases. They take him to the bathroom every 2 hours but when they take him a lot of times he says he does not have to go. There is a care plan meeting tomorrow so I am hoping for the best. When I visit it takes me hours after I get home to recoup. Now I am going about 2 x per week. I am going to see about decreasing the trazadone. They increased it for sleep but he is a zombie most of the time. They have tried a wheelchair but he will not stay in it. I thought maybe if he is in a wheelchair he would say when he has to go. He still knows me. When I go I mostly just go and hold his hand. Feel free to contact me personally if you want to chat further.
The first few weeks of LTC facility is the hardest on everyone. I've been through it twice. It is different for everyone so there aren't set rules.
How often to visit. At the beginning it can be helpful to visit less so your hb can learn to depend on the staff and not on you. Than after a few weeks start visiting more, what you are comfortable with. Some caregivers visit every day or multiple times a day, never allowing for the resident to depend on staff. In my own case when my wife was at a Sunrise I didn't visit every day but I was coming over and intervening every time she complained about something. There were things to complain about and unfortunately my intervention was necessary, but looking back I also see mistakes I made and that I believed her version of reality too often.
It probably makes sense to visit. Transitions (you ending the visit) is difficult for someone with dementia. And he probably gets tired out from the visit. It is a matter of decking how often to visit and for how long. I can't imagine you being happy not visiting even though the visits can be hard on you.
As to the violence, I've been there too. This has mostly disappeared. I don't know if this is due to my wife's decline or to changes in medication. The neuropsychiatrist at my wife's ALF has been reducing her medications and they have done some replacements. There is a suspicion that Lamictal was contributing to her aggression, it took 4 months to ween her off of it.
I suggest therapy for yourself. It is a way to help your work through your feelings and to get some practical suggestions on how to handle this transition and your journey (you mean I want to just stay at home but I have to take some crappy trip?). You want a therapist who is familiar with dementia.
Hi pam, I took Fiona's advice. I make my visits seem casual and avoid any formal "leave-taking behaviors." I say I'm going to wash my hands or use the ladies' room or if necessary, I sneak out while the staff distracts him. These tactics seem to reduce or eliminate any anxiety tied to my leaving. I don't think he even realizes that I live elsewhere. He often suggests going "home" (by which he means his childhood home) and I discuss it as though it is somewhere we will go together (later, of course). I also try to give him a change of scene, which helps to relax him and tire him out. Whenever possible, I take him out of the unit, even if only to the lobby or the rec room. If weather permits, I take him for a ride in the car or a walk on the grounds.
l cannot imagine not visiting my husband regularly. How else would I know how he was doing and if he was being well cared for? My father was a business executive in the days when manufacturing was still an economic force in the U.S. He always told us that there was no substitute for taking a walk around the shop floor, getting to know the workers, and speaking directly with them once in a while to learn what their concerns were about the product and the process. That strategy seemed to work for him and I don't see what the difference is here, except that my husband is a lot more important than some widget. If I could not personally monitor my husband's welfare, I would ask family members to do it or if that were not possible, I would hire someone.
My only advice about behavioral issues is to make sure that physical causes (a UTI or pain) are ruled out before they start loading him up with drugs. Many others on this site have a lot of knowledge about the drugs that are given to calm people down and what the side effects might be.
Pam, and when you leave, be very matter-of-fact about it and be on the way to do things that are not too great…like say you have to head out because you've got to do three loads of laundry, or you have to stop at the bank, the post office, and drop off dry cleaning. So that it all sounds normal-normal to him, and also, not particularly fun.
I visit Sonny almost everyday,I go for lunch to feed him and when he takes his nap I go home and go back for supper(Ilive only 3 miles away).I get to know bothe day and evening staff,I've made it a point to become friends with all the non nursing staff.Somtimes treating them to pizza or pie.Luckily, Sonny worries more about our dog's welfare than his own.SO I always say it's time to go home and feed Scoobi and take her out. Sonny always says OK,.It has made it so easy to leave.It's then home to an empty house and a long evening alone.I do feel more fortunate than a lot of other members.
My husband was attuned to words and language, both spoken and written, and this was something he retained for some time. In the later stages of FTD the variability of this increased. I always tried to stay aware of how the words I chose might affect him.
As mentioned here, while he was in the rehab facility and later the ALF (he was never in a NH or memory care unit), I never said "goodbye". I thought that might prompt a negative emotional reaction/memory such as saying goodbye to his parents who lived at quite a distance, or saying goodbye to his grandmother before her death. So, I would say things like "see you later".
I would never say I was going to or coming from "home", for the same reasons as mentioned in posts above.
A couple of times he really caught me, he said: "when you come back here, where will you be coming from?" I sidestepped the home issue by pointing to the hall that led to the dining room and said that I would be coming from there. Unless he asked, which he almost never did, I didn't mention anything about our companion cats because I thought it might trigger sadness or that he would ask me to bring them to visit.
He was angry, confused and frustrated with his situation. He wanted out, and I was familiar to him. I think that generally the visits were, in the relationship context, more loaded for me than him.