We are not placed yet but Told we are on the top of the list so I have been anxiously waiting the phone call both hoping for it and dreading it. When we placed fil we were told to wait a week or so to visit to give him time to adjust. We did and it was fine. Our home care worker, who now by the way is a very good friend feels it is definitely time Lisa was placed she is very good with Lisa they get along great. I was a bit shocked when she said when placement comes give it a month or so before you visit to give her time to adjust. I could not wait that long nor thing I should. I feel maybe I should wait around a week? know when I took Lisa for respite for 8 days in march she did not recognize our dog or me when I picked her up. As this is getting close i have been thinking about it what have others done? Thanks.
Hi Rona, Others on this site have written that they were advised by the LTC facility to delay visiting for one week after admission to visit. The logic seems to be to give the person time to get used to getting care from someone other than their spouse. That approach seems to work for some. No one is the same and different strategies might work for different people, so you should use your knowledge about Lisa and your common sense and intuition about what would work best for her.
I was not asked to stay away for the first week. In fact, my husband's facility encouraged me to visit whenever I wanted. I find the advice to stay away "a month or so" to be bizarre. My husband and I were never away from each other for more than a few days in our entire marriage, so it would have been cruel to subject either of us to that trauma. Not to mention putting so much trust in strangers, without even observing what is going on or how they are treating him. Talk about abdicating responsibility!
I did the opposite of what your friend advises. Early on in my husband's disease, I had decided that my most important management tool was my husband's trust in me. When he was admitted to LTC seven years after diagnosis, I continued to implement that strategy by doing everything I could to make him feel (1) that I had not abandoned him; and (2) that he was not trapped. To that end, I visited him from the start, took him out of the unit after a few days and out of the facility after a week. Since it was summer, I took him for rides in the car a lot. The passenger seat in my car is still stained from the sodas and ice creams he spilled on it.
Yes I dismissed the one month comment right away and as mentioned when I had her in respite and I went away for a week she did not recognize me when I went untill I told her it was me. I of course called everyday to check how she was doing. I do not want to stay away for a week and arrive just to find out she does not recognize me on the other hand I want to give her time to settle in. Myrtle We also have hardly been apart throughout our entire marriage. How did your husband react when you first visited? Did he want you to take him home? Right now everyday Lisa says to me I have to get out of here I just want a little place on my own. She does not want to run away from me but I think run away from Alzheimer's, she wants a place where she does not have to remember how to do things. I feel in a way she is ready to be in a home where there is no pressure.
Rona, the time is coming before too long when Lisa won't recognize you no matter what you do -- that's the way this disease works. Your concern about her forgetting you if you delay visiting comes across to me as more a matter of your catering to your own present emotional needs and feelings rather than thinking about what would be best for Lisa in the long run as far as her successful adjustment to the new environment is concerned. I expect the recommendation of waiting a month was focused purely on Lisa's well being and assumed that you would also want to do what is best for her, your own emotions aside. Letting go is hard.
I waited a month. Factors for waiting included my wife being under a 3 week evaluation period and my showing up could have reset the evaluation back to day 1.
Her behavior. At 3 weeks the staff felt she wasn't ready and they were still tweaking meds
My wife was unusual in that it took her over a year to acclimate to the ALF, and that partly depended on the progression of the FTD. Most resident adjust much faster. So it depends.
Lisa needs to learn to trust the staff. Sometimes caregivers make this impossible with frequent early visits. A friend of mine was spending every day with her husband after placing him but then stopped, she saw that she was making life more difficult for everyone, including herself. But this means that you also have to trust the staff and not all staff are trustworthy (been there, done that).
And I know others who started visiting very quickly and frequently and all went well.
Ask the ALF staff for their opinion and why. You are lucky to have a home care worker whom you trust. Ask her if her advice for a month was a general guideline or if she thinks this would be important for Lisa.
Rona, I try to operate on the principle of doing unto others as I would want them to do unto me. If I were in my husband's place, my worst fear upon being admitted to LTC would be that he had abandoned me. So that's why I made sure to visit from the beginning. I think my visits helped my husband to successfully adjust to the new environment. I always keep my visits short (1½ hours max) and am flexible depending on his mood and what else is going on in the unit. Your home care worker's advice about such a drastic separation makes me question her judgment. Even if she is a good home care worker and is focused purely on Lisa's well-being, that does not make her knowledgeable on the subject of visiting. As far as Lisa recognizing you, my own husband is well into stage 7 and has been in a dementia unit for 2 years and still recognizes me (although it's anyone's guess who he thinks I am at any particular time) and gets a lot of pleasure from my visits.
Another reason for visiting from the beginning is to monitor Lisa'ss care. My experience in life and in business is that there is no substitute for being on site. (As a former high school principal, I am sure you can relate to that.) We have all heard about problems with spouses' care and the only way to know about them for sure is to be there. Best to get off on the right foot from the start.
As I said before, everyone is different. Some people have found it better to wait awhile to visit, especially if their spouse has behavioral problems. Why don't you call the unit the day after Lisa is admitted and find out how she's doing and make your decision then?
Rona I believe you and I are quite close in where our spouses are in this journey ... My husband was just moved to a long term care facility at the beginning of February...I was told to visit anytime I wanted...I was an absolute hot mess for the first 4 days so it was likely near a week before I went to visit, but I did speak to the nurse pretty much daily...I was sort of fortunate in a way in that my husband had been in the hospital for 5 days in December and he handled that fabulously which was very surprising but it also gave me an indication that placement would not be as difficult an adjustment for him as I initially thought it would be and he has adjusted as quickly and as well as I thought he would have based on the hospital stay...I would use your experience from how your wife's respite visit went as a bit of a gauge as to how well she adjusts to new environment... If she didn't do too badly then, you may find she adjusts better than you expected...I would give it a few days once she is placed but keep in daily contact with the facility and use the information they give you to help you decide when is best for visiting...I definitely think a month is much too long to wait to visit...Even if you talked to the care home daily, there is no better proof of how she is adjusting and how she is being cared for than your own eyes and ears...it will take time to adjust for both of you, but both of you WILL adjust
Rona, I was one who visited my husband every day from the day he first was placed. In fact, I told him that we both lived there now - that it was too difficult to live in our house any longer. His room was here and mine was "up there". He never asked to see my room and never questioned me. Like Myrtle, I spent about 1.5 to 2 hours every afternoon with him, joining him in the PM activities and stayed until he sat down to dinner.
One other note, my initial experience with calling to check on my husband was not very informative. I was usually told "he's doing fine". However, once I established relationships with the nurses on duty, we would discuss whether he was having any difficulties with anything. Once they knew me personally, they were more forthcoming with real information as to his mood and behaviors when I wasn't there.
I just placed my husband last Friday. The staff said we could visit whenever we wanted, but maybe call first to see how he is doing. I ended up choosing to stay away for 4 days because he had a few issues with aggression and they had to adjust his meds. I didn't want to complicate matters further by making a premature appearance. On the fourth day, when I went to visit, he was fine. I was terrified he'd ask where the hell I'd been, but he really didn't ask any questions at all. I had been dreading the whole placement experience for months, but ours went pretty well...all things considered.
I lied and said he'd come home later when he was "better" when he'd ask (he had been hospitalized prior). That was my answer if it came up, which it rarely did. I never made a big deal of leaving. I'd just say see you later, and if he objected, I'd say I had to go to the grocery to get some more of the yougart he loved. In fact, within a couple of days, he was doing fine (and I did visit from the start). He quickly forgot he'd had another home, and I really think the smaller personal space of his room, with just some of his favorite essential things, photos, and art, really was less confusing and easier for him. He has needed less and less "stuff"as the disease has progressed. Prior he had been into arranging his things all over the house. For a while it would be photographs, then whole arrangements of objects, and as you know, arguing with someone with dementia doesn't work. At one point he had been cutting short pieces of string, rope and anything else that draped and hanging it on any protrusion (knob, picture frame, etc). I did remove those - they really creeped me out, like worms hanging on everything. I just let him do it for a week, and then removed them all when he was out of the way & was glad he forgot that behavior. He'd also take all his shirts out of the closet & hang or drape them all over the house. I did get shelves and when he moved to the nursing home, I had a friend distract him in a walk around while I hung some of his favorite photos on the wall, and arranged some of his favorite things on the shelf unit - including CD's and Radio/CD player (a friend later put all his favorite CD's on an MP3 player), some books he loved that were mostly pictures, since he could not longer read, art supplies and a small card table (and he did spend the next couple of years engaged almost all day everyday working on some amazing art), and they let him have some instruments. Also a couple of our photo albums. And a patterned blanket he loved and his pillow on the bed. So there were familiar things there to make him feel at home.
Just a quick update still waiting feel like I am living in limbo. Talked to our case worker last week and we are at the top of the list but no movement. Offered a bed but on an island a ferry ride away just would not work for me she understood. Also suggested if I expanded our area to include more facilities things could move quicker. Thought about it but no. we live in a small town with two larger cities within an hour I have looked up and down that corridor and am comfortable with the facilities in our town or the neighbouring small town have seen nothing that feels better. So by staying the course and not compromising I feel that I will have done my best. I will keep you posted.
Ron, You're doing the right thing. Just be aware that when you finally get the call, you might panic. That's what I did but a friend talked me into going ahead, which was the right thing to do. Good luck with this.
Rona, if you are at the top of the list I don't think it will be long. Where my wife lives I often see some new faces and missing faces. It should be worth the wait.
Unfortunately, there is not a "one size fits all" answer to this question. Where my husband was placed, the staff encouraged frequent visits. In fact, the first couple of weeks, they asked me if I could possibly come TWICE a day. Once in the morning to help get his day started, and again in the evening to assist getting him ready for bed. I believe this helped him greatly to get used to others assisting me with his cares. Then, we gradually transitioned into the staff doing the majority of his cares until he seemed as comfortable as possible with this "new normal." He has been in the facility for nearly two years now and I still try to visit just about every day. I do this as much for myself as I do for him. Although he smiles and interacts with me when he sees me, he doesn't know exactly who I am and adamantly denies having ever been married. However, every now and then, out of nowhere, he will give me a look, or a touch, or a smile or word that for a brief second, he seems to remember I am a part of his heart. Those brief moments are worth every day I visit him because I cherish every one of those special moments and don't ever want to miss out on one of them!
Hi lindaives, Very well put! Every facility is different in the way they help residents to adjust. I'm glad this system worked well for you. Your husband sounds like he's at a similar stage to my husband, who has also been in residential care for two years.