How much is too much? I live very close to my DHs nsg home, planned it that way. I see him for a couple hrs every day. I am Trying to move on with life, but it is difficult. I am relieved Idont have all the work that goes with Alzheimer's, but I'm having so many emotional problems. I've found it hard to get back into life.We were isolated for so long and lost friends and relationships. My counselor asked me why I visited so much? I told her because he is my husband and I love him! My duty doesn't end because we don't live together. Am I living in the past? Yes invert sad after visits sometimes. He calls me by name but doesn't know who I am, just knows I really category him! He is doing great in nsg home!
Hi, Ky caregiver. I could have written your post except I limit my visits to 1½ hours and skip a day a week, sometimes two. I visit my husband because I love him and miss him. When I told a doctor how isolated I still was after all this time -- he has been in LTC for almost 2½ years -- she suggested that I not visit him so much because even though I am happy to see him, it probably makes me sad after I do. That mad sense to me so I tried skipping some visits for a few weeks but it did not seem to help.
I have never heard any medical professional provide an explanation for the long-term effects of the years of isolation we experience as caregivers. Nor have I heard any well thought-out suggestions about how to help us. (I do not view "just get out more" as a well thought-out suggestion.) My own belief is that one effect of the years of isolation I experienced as a caregiver is that I am anxious in any environment that is not my own. Although I was initially anxious visiting my husband, I realize that now that I know all the nurses and aides and how the place operates, the dementia unit has become a safe harbor for me. It's like an extension of my house.
Myrtle, I found the same thing, that I felt most secure with my husband, just to be in his sheer presence. Whether that lessened or increased my ability to survive then and now, I don't know. I do know that in the five years since his death (and the fact that I'm now 86 and many of my friends have died) I feel comfortable alone as long as I can get out on a regular basis and be with people in a social setting. I value people more than I did. Our local Community Centre serves a very nice, low-cost lunch and has social programs, which are well-attended. Church helps, and there are friendly people there, too. New friends are made. The one thing that has remained — and that I'd just as soon lessoned — is a heightened sensitivity, especially to what I perceive as injustice. So I have no explanation or advice on the effects of long-term isolation, but I think it can shape us in a positive way. P.S. No, I think I'm crankier that I used to be.
Just like the saying goes if you have known one person with Alzheimer's then you have known one person with Alzheimer's. The journey is never the same and I think the same can be said for caregivers! How we work thought this is up to us what feels right to us. I am only at the 7 week mark of Lisa being in care but I totally relate to what you are saying I have expressed this on other threads. The difficulty in visiting, the need to be there for her, the upset and distress for both of us. I thought, is visiting the right thing if I am just getting her so upset am I making it more difficult for her to settle and it is just tearing me apart? However as you have stated I want to be there and would not feel right if I were not. I have to visit and have to get through this but I am now not going everyday. At this time I am thinking as much about my health as anything else I know how stressed I have been and I know she is well cared for.
However my experiences getting here may be a bit different than yours, we were very lucky as our friends have been there, we managed to stay active and as social as we could, not always easy but I think we did well. Last year we still travelled and met a lot of new people and had fun, well it wAs certainly different I was the caregiver not so Much the spouse but we did it. We never hid what was going on how can you. So in the last 7 weeks I have carried on trying to be social I have been going out quite a bit. I have been making the effort but you know what, it is not so easy. I don't know if it is the quilt of trying to have fun while Lisa is where she is or what but nothing seems to be fun. Hard to get motivated but I am not going to stop. A couple of days ago I woke up and realized this is the first day of the rest of my life and I am going to make it a good day. It was so I am saying that to myself every morning. Nobody is going to make it any better for me than me.
if the situAtion were reversed what would you want for your spouse? I've mentioned this before One of the first things Lisa said to me after diagnosis was I am going to find you another wife!!! Use to make me angry but now in hindsight it was just her love for me, all she wanted for me was to go on living and to be happy. She wants the best for me and what I can now do for her and for me is do the best I can to do that. I will never abandon her I will always be there for her but as hard as it is now I know I must go on I must not give in. As someone said to me early on alzheimers may get one of us but I'll be dammed if it is going to get both of us. So I am making myself go out, tonight is wing night at the local pub there will be lots of people there I am going who knows maybe I will even have fun you can be sure I won't if I just stay home. This putting myself out there is my way of trying to move forward.
Ky caregiver you used the word duty that just didn't sit right for me. You love him you are doing what you are doing out of love for him not out of duty. What would he want you to do? As you said he is doing well in the nursing home don't you think he wants you to do well too! Hope my words aren't too harsh just trying to help.
Hi Ky caregiver, when I read your post my first question was the same as your counselor, why are you going so often? For each one of us, we must weigh what is the best thing for us. Some people like going each day and it works for them. For me when I went often, I would come home depressed, emotionally drained and it would essentially ruin the entire day. After a few months I had to take a step back and reevaluate and admit to myself that emotionally I could not handle going every day. Just because we do not visit every day does not mean we do not love them. Even when I did go often he never remembered when I came and would always ask where have you been? Then I would feel more guilty until I realized that he never remembered if I was there or not. As we progress through the nightmare, it is so difficult for the caregiver to focus on themselves because it seems so unnatural because all,our energies have been on taking care of our loved one. But only as we start making decisions for what is best for us can we begin to build that new life. When I placed him I did not really move on with my life. I sort of kept the same routine and just added visits to see him into my routine. He has been gone almost 16 months and I am making progress but still am finding it incredibly difficult to try new things. Making new friends is also a challenge but again I am making progress. I would suggest that you try making small changes by first asking yourself if something is working for you or not. A huge challenge when I did visit was there was nothing to talk about and he could not participate in any of the games and things. I would read out loud from some of his favorite books until he could no longer focus and would fall asleep. In nice weather we would sit outside. Just remember you are doing a fantastic job and one day the nightmare will be over. Keep coming to this forum because you will find true support as I did. God bless.
I moved my wife into long-term care a couple of months ago, and it was the hardest decision in my life. I visited her every day for the first week or so, then every other day, and then took a long business trip where I visited her on weekends. I'm back to a few days a week now.
My wife hardly ever speaks, or looks up, or engages at all with what's happening around her. This is how she was at home before the move. I'll sit with her for a while, talking with her, showing her photo albums, feeding her a milkshake, putting flowers in her hand from a bouquet to transfer to a vase, and so forth. I generally leave when it becomes too sad to bear. It's draining, but it's my responsibility and duty to be there. Do I love my wife? Of course! That doesn't lessen the pain--it increases it. Some days I'll say to myself, "I don't have the emotional reserves," and I put off my next visit until another day. With some guilt. But preserving myself is important, too.
Rona, No not too harsh! Thank you all for your comments ! I guess Ido need to cut down visits, he doesn't really pay much attention anyway. There really isn't any conversation between us! I take him to play bingo (and play for him) or take him To a worship service, he likes those! I guess I'm going there for me, I miss him so! I know I my mind my husband is gone, I'm just trying to hang o I guess! I wish there was a how to manuel for this! Thank you again for responding! God Bless each of you in your journey!
I haven't been here since I lost my husband Lynn last September. When Joan told me she was doing a new widow blog, I had to come check it out. I really don't have the strength these days to offer support or advice, but your post grabbed my attention.
As was already stated, every one of us will feel differently. Some will visit daily, some won't go at all. There is no right or wrong, just what feels right to you!
Having said that, I will share that about the 6 month mark after placement, my doctor strongly suggested I not go in every day. Until that time, I was spending most of the day there, feeding him both lunch and dinner. He recommended I try to go in only once or twice a week to see if it helped with my health and depression. I also had family telling me to not go every day.
But you know, it was just the wrong choice for me. Not only did I cry from not being able to see him, but he also suffered and declined. Unlike some, I never lost my love for Lynn as my husband. Yes, our relationship was drastically different! But his eyes lit up and he got the biggest most beautiful smile every single time he saw me. In turn, my day was made better! Yes it was sad... But, I had the ability to make his little world better, happier.
I don't know, maybe I am different than most? Not seeing him daily was much more painful for me. I did cut down the hours I stayed though. I went for an average of 4 hours a day. It wasn't rigid, it was just the normal amount of time I stayed. Even in the hell of Alzheimer's, we found laughter and joy every single day. My goal and life purpose became keeping him safe and as happy as I possibly could in his little world.
Lynn could still engage, right to the very end. The day before he got pneumonia I have pictures of him laughing right out loud while catching a beach ball. I worked hard to keep him engaged and bought many activities that I thought might intrigue him and stimulate him. As wonderful as the staff in nursing homes are, they just do not have the time to spend one on one. Lynn thrived with the attention and stimulation. Not all can or will, I do understand that... But Lynn could, and I fought to keep what little abilities he had.
So yes, we can all listen to advice, but really nobody can possibly know what is best for you and your loved one. I listened to my doctor and limited my visits and it was the worse month of the whole 6 years and 7 months that Lynn was in the nursing home. Going every day certainly made Lynn happier, but it also made ME happier! Just being in his presence was a gift. I often said I had the best of both worlds, I could visit with Lynn during the day and then at night I could do whatever I wanted. Rested! Which I never was when I was caring for him at home.
As bluedaze told me years ago "follow your heart". It is excellent advice! My greatest comfort now, in the afterloss.. comes from knowing I did what was best for us. Not one regret, and that brings a measure of peace.
It's hard, the second hardest thing I have ever done. Be gentle with yourself, we each do the best we can in this impossible situation ((hugs))
Nikki, I always appreciated your comments, and this one is no exception. And I do think you must have had an exceptional relationship with Lynn, as many others here have had that kind of love story with their loved one. Sadly not everyone can say that, but I admire (and envy?) those who can.
Glad to see you here again, at least on occasion as you are able.
When I placed my husband in 2013, I wondered how often I should visit. Nikki, I remembered reading your posts about how and why you came to your decision to be with Lynn everyday, rather than staying away some days. I took your advice to heart and it worked for me for almost 3 years. Lately I get more depressed seeing him everyday because he rarely engages with anyone and does not seem to know me. I closely monitor my emotional health and sometimes I take a day off, but I am always happier with him than without him. I remember that your devotion to being with Lynn every day helped you as much as it helped him and I keep that in mind on the bad days. I am trying to create a life that brings me some measure of satisfaction, if not happiness.
I went Sunday to see my hubby...I hadn't been able to see him for about two weeks, due to the after-effects of chemotherapy treatment #5, plus he's about 20-25 miles away. Anyway, talking to the aide - she told me that he's becoming a little more aggressive, demanding to know why he's there, when he can go home, balking big time about showering (it's my body & I know what to do with it). His daughter & son from his first marriage have been to see him, his sister has been there, but it doesn't seem to satisfy. He wants to see me! And our son, but mostly me. That's really hard for me to shoulder that responsibility, due to my personal health issues, & the guilt has kicked in again. I will go to see him again on Wednesday, but chemo is Thursday, so there will be more time that I can't get there. Yi, what am I to do? If I try to find a place closer to home, what will it do to him? Will a transfer be too much for him, confuse & anger him even more? He apparently still isn't sleeping much at night, sometimes doesn't even change into pajamas, just sleeps in a chair in his clothes. They can't keep arguing with him about it & upsetting things even more, so they back off. I can understand that. She said they can tell when he's getting upset & angry...he gets "the look" on his face...I'm very familiar with that look. The eyes narrow, he stares & his mouth gets very "set" is the only way I can describe it. When he did that at home, I always thought he was pouting more than anything, but maybe I misread it.
Anyway, just had to get this somewhat off my chest...maybe time for a little wine? :)
Yes Mim, definitely time for some wine!! It all sounds so difficult for you. I am watching my sister suffer from the effects of chemo and radiation so know that you would be suffering too. It was good that you did get to see Dan but if you are not able then you are NOT ABLE and please do not feel guilty. You have so much to worry about at the moment so just do what you can when you can and when you can't, be kind to yourself and remember the healthy Dan and what he would want for you if he was still able to speak the words. I send you my very best wishes, cassie
Thank you Cassie. I know for a fact that if he was well, he would want to do what's best for me. When I've been physically down in the past, he was quite helpful. Almost hard to remember the healthy Dan :(