Hullo, my First time on this message board, although contributing to Talking Point. Briefly my wife has declined over the last 2 years with a diagnosis in 2019. In the last 3 weeks there has been a rapid decline culminating an admission to hospital with a serious infection over Christmas. Arrangements made for a placement in a Care/Nursing Home which is likely to be permanent. This was done after 3 nights without sleep, patience and anger control tested to the limit. Now in a safe and caring environment, I have to consider myself. I belong to a support group, but it doesn't help after a difficult visit returning to an empty home. I could easily fold, but Iam trying to be positive for the long term. I get periods of sadness and despair, but thinking I have now some freedom to seek new opportunities. Luckily at this stage we are self funded. Family support is limited. Any views or advice would be welcome. Yardman
Hang in there, Yardman. You are not alone. Such a rapid decline is unusual from all I've heard on my support sites. You have had a lot to deal with in a relatively short time. Give yourself some time. Take one day at a time. All Best Wishes to You. CarolVT
My husband is still at home, but placement is going to happen in the next few months. Over the years, DH has gone to respite quite a few times. (Not the same as placement, but sort of a preview of what it would be like.) After a couple of times of just wanting to cry when he was gone, I started to always have a project planned to help me get over the issue of being alone in the house. Sometimes I would have everything set up so I could start it the minute I walked in the door. One time I listened to every music cd I had, and watched a lot of dvd movies. These things reminded me of better times, and life before dementia. I'm a reader, so I'm planning to make good use of the nice library that is close to our house.
Over the years, I've been amazed at the activities that are available out in the non-dementia world, for people who have the time to pursue such things. Even in the relatively small town where we live, there are lots of ways to start getting out and being around other people. But it's going to take me a while to be ready for socializing. I find that sometimes people who haven't been through caregiving are dismissive and hurtful about our ongoing struggles.
The best advice I can give you, based on years of listening to other caregivers who have done this, is to give yourself time to figure things out. After years of not thinking about what we want or need, it's hard to shift gears and allow ourselves to hope and dream about things. But one day, you will find something and think, "Yes! That's it." And small pieces of life will start coming together again. It may be different from the life you wanted and had planned, but it's life nonetheless. I hope that can happen for you, and for all of us who have been caregivers.
Feb 6th marks the 1 year anniversary of placing my husband. At first it was great to finally be free of 24/7 living with AD after 10+ years. I enjoyed the freedom of doing what I want when I want. Then grieving started to hit bad around Sept getting worse during the holiday season. This was the first Thanksgiving and Christmas in 49 years we were not together. I deliberately did not go on those days deciding for me it would be less painful to be home by myself than with him and it was. But this holiday season has been one of the hardest. Even though things are little better emotionally I still cry a lot often out of the blue. March 8th will mark 12 since his diagnosis. In Sept thought he was heading towards the end but he seems to have stabilized but I know it can happen any time now, next week, next month or still years. I am one that does not have a network of friends or family to lean on, so it is just me, myself and my computer. It is hard to be a 'living' widow.
I placed my wife 6.5 years ago. It takes time to being alone no matter what the conditions were before.
So give yourself time. Don't suddenly make major changes to your life. Over time you might start wondering why you do things a certain way and realize you can live differently.
I suspect the infection might have to do with her sudden decline. You may see some improvement as the infection is treated. You may consider that her care is better since many people are caring for her.
Do not feel guilty if you find that you can sleep better or do activities that were impossible before.
Since you mention FTD, which is my wife's diagnosis, I recommend the book "What if its not Alzheimers" and https://www.ftdsupportforum.com
January 5th, marked the 2nd anniversary of my husband's placement in Long Term Care. Previously he had been in private care since June 2017. It's already been 2½ years since he's been away from home. Even though I see him daily I still miss him so much. I go every lunch time to feed him & visit with him afterwards.
My visits use to make me cry - so difficult to see him so lost. Every time I cried it would always ruin the rest of the day. I was so tired of crying all the time - it was draining. I realized I would either have to try & make my visits more pleasant or I wouldn't be able to visit him daily - couldn't take that constant sadness. Since I wanted to visit him daily, I worked hard at making a crappy situation a bit more pleasant. I focused on the fact I could still hug him, kiss his cheek, hold his hand & see him smile. There are times when I hold his hand, close my eyes, take deep breaths & imagine or "pretend" everything is as it use to be. It may only last for a minute, but it actually feels good.
He's been in a wheel chair since last May because he loses his balance when he walks. That was very difficult for me to accept. But, now that he's in a wheel chair it's easier for me to take him out. I've taken him to the mall which luckily is across the street from his residence. I've even taken him into the grocery store to pick up a couple of things I needed. It's a change of scenery for him & time for us to spend together out of the residence. I can't do that now since it's winter, but looking forward to doing it again in the spring.
For the past few months I've been knitting "Izzy dolls or comfort dolls" for children in war-torn countries. So now I bring my knitting when I visit him. I sit him in front of his window since he likes to look outside, I sit close to him & we listen to the music I bring & I knit. When I hear a good song I take his hands & move them around like we're dancing & that often makes him smile - that makes me feel good. He sometimes dozes off, which is fine & when he wakes he sees me. Most of the time my visits are comforting & pleasant. There are still times I cry when I see him which I've accepted (instead of fighting it), because I know the sadness will pass & I've become much better at focusing on the positive(even though there's not much positive).
Nicky, good to hear you have found a way to make it work for the better for you. Thanks for the ideas.
I wish I could leave without sneaking out. I think it would be easier if I could say goodbye, see ya later but I can't or at least don't think I can. One of these times I am going to tell him I have to leave and see if he starts crying like in the past. I have not wanted to put him through that enough to try. The last visit we were sitting on the bed, was rubbing his back when he laid his head on my shoulder. I was not expecting that and it did affect me.
Charlotte, so sorry to hear you have to sneak out - it must so very difficult for you to see him cry as you leave. I've been fortunate that my husband has not cried when I leave - I don't think I could handle that well - that requires a lot of strength - not sure I have that strength..... Good for you Charlotte, for being so strong. When I leave I always tell him I'll be back & he seems to be OK with that.
Perhaps my husband is a bit more advanced than yours? Last year when he was mobile, he'd hug me tightly & tell me how much he loves me & that would make me cry, but now he barely speaks & doesn't hug me since he's been in a wheelchair. He sometimes squeezes my hand & I see that as his hug. I believe my husband is less aware than yours, which in a way makes certain situations a bit easier.
You mention your last visit where he laid his head on your shoulder - I can certainly understand why it would affect you - very emotional situation. Sorry, to hear you're going through that ((( ))) hugs.
Thanks for all your comments. My wife has been in a Care/nursing floor for 1 week. To date she has not settled,dislikes the food and drinks. The Antibiotics prescribed have been spat out until I suggested a prescribed liquid form. This is to combat a cough and possible infection. Diagnosed over the phone at this stage!!!! I am finding the daily visits very difficult. To sit in a lounge with a dozen others who are either sleeping or just lost in their own world is soul destroying. However when activities,like music,exercises and singing. Some become animated including wife who smiles and sings along. It is clear after this short while each day is different with its own challenges. What I thought was unusual behaviour is the norm with FTL. I am told by everyone I meet that I must look after myself. I have started to network and belong to 2 support groups. I would like to be involved in the Voluntary Sector. How have I felt returning home to an empty house alone? Deverstated,sad with periods of despair. I am trying to be positive, but it is so difficult. Yardman
It can take awhile for them to settle in and depend on the staff instead of you. Sometimes you have to stay awhile which could be a few days, a week or longer. Talk to the director/administrator of the facility to seek their suggestions.
When I visit I take my husband elsewhere, usually his room. When the weather was nice we would go sit outside. Now it is his room or we sit at the table. He is in a home like facility where there is a living room, kitchen, dining room and their bedrooms are around the sides.
It is good they have activities she enjoys. My husband has always refused to be involved in any activities.
There are many of us here who still battle that loneliness even after months or years of placement. Feb 6th marks one year. I enjoyed the first few months then last summer the grief hit me - was really bad during the holiday. When I am honest the grief is not only what he is loosing but I think more of what I am loosing.
Charlotte is right - it takes them a while to settle into a new environment. And you also need time to adjust to your new life. Everything you're feeling is normal. You must take it one day at a time - it does get better. You need to try & distract yourself - give yourself permission to put your stress 'on the back burner' even if it's only for 1 hour - it will help.
It's good you belong to 2 support groups. Support groups are great for sharing, knowing you're not alone & finding out ways to cope with certain situations. But you also need to go out with friends. You need to talk about other topics – not just the disease. Being with friends will allow you to temporarily forget your problems - not completely, but at least give you a little break. Go to a movie, sporting event or dinner at a restaurant – allow yourself to laugh.
I speak from personal experience. My husband has been in residence for 2½ years. I went to a support group, but I realized I also needed the distraction friends can offer. I needed to talk about something other than my husband's illness. The friends have given me an opportunity to forget for a little while – sometimes it's just ½ hour, but trust me it feels good. As time goes by, that ½ hour turns into 1 hour. And I had to go out & find friends because we moved to a new province shortly before he was diagnosed - I didn't really know anyone, so I didn't have any friends.
I know everybody deals with stress in their own way, but I hope you find some comfort in the posts you read. The folks here know what you're living & are here to support you.
It took my wife a year to settle in. Now she is very settled and couldn’t be anywhere else. Next we she has to deal with moving to another wing where she can be better watched after.
So a week is a very small amount of time for you and her to adjust.
Think about staying away and if currently visiting her every day is making it more difficult for her to adjust. Discuss with staff.
And ask staff how she is doing. It is common for a resident to tell a LO that it is terrible but have a good time when LO isn’t there.
Thanks for your advice. Visiting my wife in her Care Home in this short period is a very steep learning curve for me. Each day is different for both. Where. I thought her moods and behaviour were unusual, speaking to staff and looking at this Forum. There is a 'normal' which I have to accept in this difficult journey. Another difficulty is backing off attempting to do tasks for her that I have done for a long time in our home. For instance helping with her feeding and walking. I am gradually building a relationship with all staff and so far this helped a great deal. Yardman
My wife appears to have nearly recovered from her infection.She is able to communicate in a limited fashion now. She is brighter, eating and drinking. Yesterday and today she asked are you taking me home? How long do I have to stay in here? When I get home etc. Currently she is unable to walk without help or do the basics for herself. Therefore I can say honestly she has to get better. Will the time come when I have to tell her she cannot come home and I am unable to look after her? What advice would you give me to handle the situation? Yardman
I told my husband I could no longer take care of him at home. Once he got better then he could. He accepted that and after almost a year finally does not ask anymore. For you tell her until she can walk without help and help take care of herself, she can't. Others have told their spouse they have to stay there while they are getting some type of medical care. While that is happening they can't take care of them like they need.
One thing you will get good at and stop feeling guilty is telling 'fiblets'. I was raised to not lie and I never lied to my husband. But, I have become good at fiblets. I really felt convicted at first but finally accepted it was necessary and God understood (which was important to me).
Sometimes it is better for someone else to give her the news. I am talking about the medical people. It is important that she not blame you for any decision.
My wife never really got that I couldn't look after her, though she did voluntarily move to an ALF. Both her psychiatrist and neurologist brought up the move to her.
You can try to distract or deflect the conversation when she raises the subject, as in "Oh, look at that bird outside the window. Don't think I've seen that one before." Or, "Let's see what the doctor says. You can come home as soon as she/he says you are ready." Or, "The heating system is having a problem. It should be okay in a few days." I concur with Paul that someone else needs to take the blame, and the professionals should be willing to do that. You may never need to tell her directly and bluntly that she cannot go home. What is important is that you know in your heart that she cannot come home, and you do not need to keep rethinking that decision. You can cover it with fluff for her. One day at a time.