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Loved ones in a Care Home.

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello Bugsbunny, l know how upsetting it is for you l have the same problem with Ed he always wants to come with me when l leave, it has got better now that l told him a few months ago that l live in the CH, l just say to him, l am going to bed now, sometimes he says l am coming with you, l say l am like the Queen we have seperate rooms, then disappear very quickly, l don't think he knows what l am talking about. I always say see you in the morning. Makes me feel better, we have to make up stories, sometimes it works.
 

Bugsbunny4

Registered User
Nov 6, 2015
80
Yorkshire
Hello Bugsbunny, l know how upsetting it is for you l have the same problem with Ed he always wants to come with me when l leave, it has got better now that l told him a few months ago that l live in the CH, l just say to him, l am going to bed now, sometimes he says l am coming with you, l say l am like the Queen we have seperate rooms, then disappear very quickly, l don't think he knows what l am talking about. I always say see you in the morning. Makes me feel better, we have to make up stories, sometimes it works.
Thankyou,
I know you understand only too well. A friend gave me a quote.

Accept what is
Let go of what was
Have faith in what will be.

I read that every day, it's on my kitchen wall. Trying very hard to live by it and it helps. X
 

Bugsbunny4

Registered User
Nov 6, 2015
80
Yorkshire
Oh dear, Bugsbunny, it's awful, isn't it? I think I'd definitely take a day off. A similar thing happened with me; seeing him standing on the other side of the door saying, "As far as I know I'm supposed to be going too," was one of my worse times. It certainly made me feel like not going back!

I tend to say we have to wait till the doctor says it's OK. Then he's likely to say, "What's wrong with you?" !! Sometimes it works, but if I have to I ask the staff for help as I need to go and they're great.

Hope it's all forgotten by now and he's in a better mood next time. Does he like music? I found playing what he liked on phone or tablet did help to change mood.
Hi optocarol,
Yes he does like music and that usually works. Yesterday he wasn't sitting long enough to listen to anything.
It was only when I went to sit in the back of the lounge and there happened to be a vintage channel on TV playing all the old songs that he became more calm.
X
 

tigerlady

Registered User
Nov 29, 2015
427
I think I had my worst visit today. My husband had convinced himself that we were going on holiday and kept asking when we were setting off. I was unable to get him off this theme, even the food ( home made stuff) I had taken failed to lighten his mood.
Finally I said I thought the doctor would think flying wouldn't be a good idea at the moment. That didn't go down well and he became quite verbally aggressive towards me saying it was typical of me not to want to do what he wanted , I never did!
He continued in this mode becoming more and more agitated so I finished up saying I would have to leave if he carried on because it was upsetting.
He said he didn't want me to leave him. I stayed three hours altogether and he calmed down but still had the idea in his head that he was coming home with me. So when I left at tea time he was pleading for me to take him with me. I could only think to say that perhaps we could do that another time.
Today has really put me off even thinking about taking him out because in his present mood he wouldn't go back in.
I think I will have tomorrow off and hope he is more calm when I visit next time.
Hi Bugsbunny. So sorry you had a bad visit yesterday. I do hope you had a day off today - its so stressful to have a bad visit, and you need time to recover when that happens. I don't see my husband every day - I go 3 or 4 times a week and they say he's fine when I'm not there. He doesn't miss me as he has no short term memory at all. Sometimes if I am out of his sight for 5 mins, he either doesn't know who I am when I get back, or else he greets me as if I have just arrived. He never forgets our dog though, and I take her in on nearly every visit. He has a life sized toy dog there which pops up in various locations, so he thinks the dog is always there, and probably thinks I live there as well. He actually asked once what was this place so I told him the name and then he asked if we lived there now and I said yes. I visited Monday, and it didn't really go well, although I've had worse times. I'll go tomorrow as it music therapy, and he usually enjoys that. I hope your husband is calmer when you next visit x
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
Today l had a phone call from the Memory clinic Dr. She visited my husband in the CH, she said Ed's Alzheimers is now too far advanced to take Donpenzil, l was told by his previous Dr if he stopped taking it, he would go down hill very quickly.
Does anyone have a loved one that has stopped taking this drug, if so what were the consequences.
Ages ago my husband stopped taking donapezil, and he DID go downhill, so it was brought back. That was our local GP who knew him, but now he has a new GP at the Care Home, and I don't know if they will change his meds.. I don't have Power of Attorney for health and welfare, so I'll have to rely on the Next Of Kin argument.
 
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Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
The break with your dog will do you good Geof, and lovely that Anne was contented when you saw her recently, so yourmind can be at peace.

Terribly sorry, bugsbunny that your visit was so distressing. The one thing my husband seems able to keep in mind is me...and that he feels he should be coming home with me.

I've tried various tales to distract him from this purpose, the latest being that we have painters in our house and it's a terrible mess, and also cold, with all the doors and windows open, so we can't go back until they've finished. When he pursues his theme, I tell him I'm camping in our son's single spare room. It seems to work, and there's a grain of truth in all of it; our regular painter IS very slow, and I can stay in our son's place if I want to. It's the best tale so far, that I've invented. There have been others. He lives in the moment, no short term memory now, so I can get away with little fabrications.

I know, it breaks my heart to deceive him when he's battling with his difficulties, but somehow we have to find the best way to cause the least distress...
 

Bugsbunny4

Registered User
Nov 6, 2015
80
Yorkshire
Hi Bugsbunny. So sorry you had a bad visit yesterday. I do hope you had a day off today - its so stressful to have a bad visit, and you need time to recover when that happens. I don't see my husband every day - I go 3 or 4 times a week and they say he's fine when I'm not there. He doesn't miss me as he has no short term memory at all. Sometimes if I am out of his sight for 5 mins, he either doesn't know who I am when I get back, or else he greets me as if I have just arrived. He never forgets our dog though, and I take her in on nearly every visit. He has a life sized toy dog there which pops up in various locations, so he thinks the dog is always there, and probably thinks I live there as well. He actually asked once what was this place so I told him the name and then he asked if we lived there now and I said yes. I visited Monday, and it didn't really go well, although I've had worse times. I'll go tomorrow as it music therapy, and he usually enjoys that. I hope your husband is calmer when you next visit x
Hello,
Yes I did have my day off but I rang around 6.00 pm to see how he was. I had phoned at 8.30 to speak to the manager and was told he'd had a very unsettled night and she had been walking around the garden with him at six. He was talking about a granddaughter who is ready for the RAF!! Where this has come from I don't know, our oldest grandadaughter is 11.
So at 6.00 when I rang I was told he'd been not too bad that morning but was agitated and unsettled all afternoon asking where I was. The carer Said she had been going to ring me so he could talk to me but decided against it.
I asked to speak to him and was met with a very angry husband demanding to know what I was playing at. He had been left and I had just walked away from him the previous day. I said I would never leave him I just went for my tea but hadn't visited because I'd had a bad night.
Then he wanted to know who was the man I had taken up with. Whatever I said he didn't believe me. All of this was said in a very angry tone. In fact he sounded furious.
After the carer came back on the phone I said that in my opinion all his recent agitation and anger was due to the reduction made in his diazepam. A local doctor reduced his dose of two a day in gradual stages to 1/2 tablet in the afternoon. This was done because he had been falling. The review by the psychiatrist from the hospital and the CPN is due on 16th /Sept.
If this trend carries on I am worried he will end up being sectioned again and sent back to hospital before the review.
I don't want to go today because I only have about an hour free this morning as I am expecting visitors this afternoon and not sure of the time.
I hope music therapy goes well.
X
 
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Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
I'm so sorry Bugsbunny, how upsetting this must have been for you. Nothing, but nothing would convince John that I wasn't having multiple affairs, and in the end I just apologised, and say I'd try really hard not to have any more in future.

I always found protesting my innocence about everything just annoyed him even more, but apologising worked quite well. :) My motto became "go with the flow".
 

optocarol

Registered User
Nov 23, 2011
315
Auckland, New Zealand
Sorry from me too Bugsbunny - sometimes it seems nothing works, whatever we try.

Agree with Scarlett re going with the flow. I wish now I'd done more of it. I haven't (so far) been accused of affairs, but have died numerous times or disappeared for various reasons. A helpful friend who used to work in a psychiatric hospital said, "Maybe it's his befuddled brain's way of making sense of why you're not together." Also sent me something she'd read which said the dementia patient does not need to be grounded in reality.

Not sure if this is any help, but there are many here who understand.
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello bugsbunny, so sorry you are going through a bad time, once our loved ones are in care nothing goes smoothly, Ed can not understand why l am not with him all the time, he always wants to come with me when l leave, how are you feeling? Ed has been in care a year this week, l feel so much better, l must admit l enjoy my freedom. ☺
 

Bugsbunny4

Registered User
Nov 6, 2015
80
Yorkshire
Hello bugsbunny, so sorry you are going through a bad time, once our loved ones are in care nothing goes smoothly, Ed can not understand why l am not with him all the time, he always wants to come with me when l leave, how are you feeling? Ed has been in care a year this week, l feel so much better, l must admit l enjoy my freedom. ☺
Hi,
Yes I can understand how you feel exactly. I too am enjoying my freedom and its that aspect which I feel worst about. From what you say our situations are very similar. My husband went into care last November but hasn't been at home since August so it's just over a year on my own. Sometimes I think I can't face doing this for the next ? Years I am exhausted now because visiting every day is very stressful.

I was told it would get easier but so far it feels worse to me.
X
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello bugsbunny,
Try not going to visit everyday, l now don't visit 2 days a week, l do feel much better having 2 days off, to start with l did 1 day, he didn't seem to miss me, for the last 2 months l do 2days, the carer's say he is looking for me, but he will get use to it. I have come to terms with the way life is now, it is not easy for some of us. I think of my husband every minute of the day, the only relief is when l am asleep, but life goes on, and we cannot change it.
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
Hello bugsbunny, so sorry you are going through a bad time, once our loved ones are in care nothing goes smoothly, Ed can not understand why l am not with him all the time, he always wants to come with me when l leave, how are you feeling? Ed has been in care a year this week, l feel so much better, l must admit l enjoy my freedom. ☺
Where has that year gone, Pam? It seems only recently that you were posting about the possibility of Ed going into Residential Care. Hope you're well, and thank you again for meeting me and having our lunch together. I enjoyed it so much xxx
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello Scarlett, l was thinking of you today, l am well thank you, Ed was very happy yesterday, as you know everyday is different. I am feeling more settled now. ☺
 

tigerlady

Registered User
Nov 29, 2015
427
Hi,
Yes I can understand how you feel exactly. I too am enjoying my freedom and its that aspect which I feel worst about. From what you say our situations are very similar. My husband went into care last November but hasn't been at home since August so it's just over a year on my own. Sometimes I think I can't face doing this for the next ? Years I am exhausted now because visiting every day is very stressful.

I was told it would get easier but so far it feels worse to me.
X
Totally understand how you feel - I feel the same and my husband has been away for just over 2 years now. You have to take each day at a time and not look too far into the future as its scary. xx
 

Kaatt

Registered User
Sep 5, 2016
9
My dad is currently in hospital and we have just made the decision, for him to move to a nursing home, when he is well enough. This is based on his medical needs and high risk of aspiration. It is such a heart wrenching decision. I am gutted for him, that his life is coming to an end in this way.
 

Tattoo Lane

Registered User
Jun 28, 2016
176
Devon UK
My dad is currently in hospital and we have just made the decision, for him to move to a nursing home, when he is well enough. This is based on his medical needs and high risk of aspiration. It is such a heart wrenching decision. I am gutted for him, that his life is coming to an end in this way.
Oh Kaat , what a difficult decision, but perhaps one that is right, in order to take some stress off the family, and to ensure Dad is safe and well cared for 24 hours a day. Sending huge hugs xxx
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello Kaatt, welcome to TP, it is a very difficult time for you, l do hope that your father settles into his new home.
He will be well looked after, and you will have peace of mind. My husband has been in a CH for a year now, he is in the best place, less stress for me, l enjoy my visits, l have made lots of new friends and so has my husband.
Ihope all goes well for you.
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
Welcome Kaatt, sorry it's such a difficult time for you. Your dad will be in the best place for him, that's the main thing....And you'll find plenty of understanding people on here...
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
My dad is currently in hospital and we have just made the decision, for him to move to a nursing home, when he is well enough. This is based on his medical needs and high risk of aspiration. It is such a heart wrenching decision. I am gutted for him, that his life is coming to an end in this way.
Hi Kaat, and a warm welcome from me too. You'll find that you're surrounded by folk on here who understand how you're feeling, and know how difficult it is. Your phrase "heart wrenching" describes those feelings perfectly, when the decision for a care home has to be made.
 

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