still here cont....

[sunshine chrissy]

Well done @sunshine chrissy 👍👍

you did good and it sounds like the home are managing him too - you enjoy re-discovering yourself….

❤️

This is why it`s for the best however painful.



I know it might be difficult for you and the family but could you reduce the visits a little to give your husband a chance to settle?

We left it for a week but now I'm thinking maybe visits from one of us everyday maybe too much,I'm stressing though because he smokes roll ups which I've been doing for him for a year or so now,he can't do them anymore,my son suggested today that he'd drop them off each day at reception to take my worry away so he did that today.It's all about the guilt right now but he's got no idea anyway whether anyone will come,he barely knows what day or time it is.It's going to take time isn't it to adjust to it all.

 

[sunshine chrissy]

@sunshine chrissy
Sorry to hear it was so hard for you and your daughter yesterday but it sounds like your husband may have started to settle a bit.

Must admit I'm a different person now after a week of no caring duties, I'm thinking I can't go back to that,
I think it shows how much strain is put on us being carers, we forget what real life is all about. Hopefully, they will take him full time now and visits will become more bearable for you both.

Honestly,I've had this last week to think back about my life this last year,I didn't even think about the fact I was isolated and virtually housebound this last few months,it's crazy.Now my family and close friends are saying I'm the strongest person ever,they couldn't do what I've done etc.No,I just did what I had to do and got on with it,we have no choice really do we? I just hope now that he gets a permanent place there,it's far better for him and for me.It's got the highest ratings of any carehome in our area so we're lucky,I didn't choose it,it was suggested by our social worker.

 

[sunshine chrissy]

Hello @sunshine chrissy and @jay6 - well done Chrissy for seeing it through and admitting to yourself that he’s in the right place, safe and with people who know all about his condition. You can put aside the burden of being the carer and appreciate your life without feeling guilty.
You are crying for the loss of the person you used to know and love - that’s what we know dementia does, takes the personality and leaves a very changed and difficult person behind. It’s a good thing to cry, let the grief out, you and your family.
Appreciate the time you have now, not having to be “the carer”. You have given it your best shot and have been sensible in admitting that now others can take over. No room for guilt.
I am in the same position as you were but with no hope of respite as yet. It’s an awful place to be - my husband of 48 years is gone and I am sad for the person he used to be and the good times we had, not about what he has become.
It sounds like your family are loving and supportive to both of you - best wishes to you all xx

❤️

@Kath610 you are right - it is so sad to remember the people they were and witness what they have become due to this cruel illness.
@sunshine chrissy you have done an amazing job, given your husband everything you could to keep him at home, but there comes a point when it is too much for one person and you have reached that point. You can't go back - sleepless nights and endless days, and he needs that extra support. My dad had a fall, he was suffering from dementia but had not been diagnosed. My mum was 85 and could not cope with him so we had to persuade him to go into care telling him that it was just for a short time until he was better. When we visited he wanted to leave with us, we would just tell him we were nipping out to the shops and would be back - he accepted this and it was kinder than the truth. He did settle, he loved the food and in his mind he was in a hotel!

❤️This is what I'm hoping for,it's such a friendly place with so much going on,lots of good food and treats,it's so much more than I can give him at home.

 

[jay6]

Honestly,I've had this last week to think back about my life this last year,I didn't even think about the fact I was isolated and virtually housebound this last few months,it's crazy.Now my family and close friends are saying I'm the strongest person ever,they couldn't do what I've done etc.No,I just did what I had to do and got on with it,we have no choice really do we? I just hope now that he gets a permanent place there,it's far better for him and for me.It's got the highest ratings of any carehome in our area so we're lucky,I didn't choose it,it was suggested by our social worker.

I don't think any of us really see how much it affects us or how much stress we cope with, until we have some sort of break. We just carry on the best we can without seeing the damage. I can't get mine into respite but I know how nice to is when we visit my daughter for a week at a time.
I hope he gets a permanent place Chrissy, and you can get some kind of 'normality' back in your life. You'll be able to visit without all the stress.

 

[JaxG]

❤️

❤️This is what I'm hoping for,it's such a friendly place with so much going on,lots of good food and treats,it's so much more than I can give him at home.

❤️

 

[sunshine chrissy]

I don't think any of us really see how much it affects us or how much stress we cope with, until we have some sort of break. We just carry on the best we can without seeing the damage. I can't get mine into respite but I know how nice to is when we visit my daughter for a week at a time.
I hope he gets a permanent place Chrissy, and you can get some kind of 'normality' back in your life. You'll be able to visit without all the stress.

❤️

 

[Slipstitch]

Sunshine Chrissie - This is my first time back on the forum for several months. When I was last on here, you and I had a lot of parallels. I just wanted to say hello, and tell you that my husband has also very recently gone in for respite, and I've made the decision now that he should stay. Like you I had almost completely forgotten what normal life was like.

His condition has gone beyond what I can manage on my own. We had carers in at home for six weeks - worth trying but it was hopeless because he wouldn't let them do anything and it just made things more difficult for me. So I know it's the right decision, but it's made me feel almost unbearably sad.

It was such a shock on my first visit seeing him in that setting, just another old man in a chair, and the dementia unit is a bit bleak and rather institutional looking. I held it together while I was there but couldn't stop crying afterwards. This business of having to slip away while he's distracted feels wretched, too.

The respite happened rather suddenly so it's a huge adjustment - such an enormous change in both our lives. I suppose I'll get used to it all. Still on the edge of tears a lot of the time. I don't have family so it's just me - sometimes I wish I had a son or daughter to go there with me. I fear I will come to dread the visits, but let's hope not.

Anyway, just wanted to say hello to you again and wish you the courage, strength and resources all of us on this forum need all the time, whatever's happening and whatever stage things are at.

 

[Grannie G]

Welcome back @Slipstitch Keep posting for support.

No one is alone on the Dementia Support Forum. We cannot replace family but we are a good second best .

 

[Slipstitch]

Thanks GrannieG, I think I'm going to need the support of this forum again for a while now. Feeling very tearful.

The enormity of this decision I've taken for him to stay as a resident... the contrast between his life (diminished, locked in the rather bleak dementia unit with other old people he doesn't know) and mine (still in our home, seeing friends, expanding again into the colourful world) .... I know I couldn't carry on and couldn't look after him properly any longer, it was time, and I had to do this, but living with it is proving pretty awful so far. I feel unbearably sad.

I also worry that there are more welcoming, homely dementia units elsewhere. Really I had no choice - this was the only home that could do respite, then they created a place for him on the dementia unit so he could stay on if I wanted, they do nursing care when it's needed so he wouldn't have to move again... it's all fallen into place just when it was needed and it's near home. I like the managers, the care staff are kind and they are coping with the things I could no longer cope with. But could/should I have tried harder to find somewhere with a less bleak looking dementia unit? This is eating at me.

The other thing is telling friends, acquaintances & family about the decision. It's painful and exhausting having to repeat it all again and again and I cry every time I have to do it, however hard I try not to.

If you've recently got through similar things, come out the other side and are still standing, please tell me about it. It would really help.

 

[Kath610]

Thanks GrannieG, I think I'm going to need the support of this forum again for a while now. Feeling very tearful.

The enormity of this decision I've taken for him to stay as a resident... the contrast between his life (diminished, locked in the rather bleak dementia unit with other old people he doesn't know) and mine (still in our home, seeing friends, expanding again into the colourful world) .... I know I couldn't carry on and couldn't look after him properly any longer, it was time, and I had to do this, but living with it is proving pretty awful so far. I feel unbearably sad.

I also worry that there are more welcoming, homely dementia units elsewhere. Really I had no choice - this was the only home that could do respite, then they created a place for him on the dementia unit so he could stay on if I wanted, they do nursing care when it's needed so he wouldn't have to move again... it's all fallen into place just when it was needed and it's near home. I like the managers, the care staff are kind and they are coping with the things I could no longer cope with. But could/should I have tried harder to find somewhere with a less bleak looking dementia unit? This is eating at me.

The other thing is telling friends, acquaintances & family about the decision. It's painful and exhausting having to repeat it all again and again and I cry every time I have to do it, however hard I try not to.

If you've recently got through similar things, come out the other side and are still standing, please tell me about it. It would really help.

Hello @Slipstitch , I haven't experienced putting my husband(Alzheimer's) into a care home yet though I look forward to the day when I can - I have had enough. What I have done is created two WhatsApp message groups - one for family, one for family and friends. I use these to keep lots of people informed about what's happening. Everyone is supportive and I don't have to justify myself or make excuses. No-one judges me (not that they have any right to) and they are all aware of what's going on. Would this be useful to you?

 

[Violet Jane]

My mother had to go into a care home and I remember clearly the shock of seeing her in there, surrounded by other people with dementia, when I visited. Away from the home environment she looked worse as there weren't familiar things around her creating an air of normality.

Sadly, your husband is diminished wherever he lives now because that is the nature of his illness. Please don't let the contrast between his life and yours prevent you from rebuilding your life after the toll of caring otherwise dementia will destroy two lives rather than one.

There's no rule which requires you to visit a particular number of times a week or for a particular length of time. If you find visiting upsetting then you can visit less often or for shorter periods or take a break from visiting for a while. I found visiting in the later stages, when my mother couldn't really talk any more and couldn't engage with anything, very difficult and an hour was about as much as I could manage.

 

[canary]

Dementia units are often a shock @Slipstitch . They are often a bit shabby, but try and look beyond the decore. My mums care home was a dementia home and it looked shabby and old fashioned, but it was homely, the care was wonderful and mum was happy there.

Its going to take time for you to adjust, as well as your husband. Your head knows its the right thing to do, but your heart hasnt caught up yet.

 

[Slipstitch]

Thank you so much Kath610, Violet Jane & Canary for your replies and for the comfort and help they've given me. You are all wise and sensible. I think I just need time.

I visited today and talked quite a bit to the staff, and came away feeling a bit better (although I still cry when people in the town ask after my husband and I have to say he's 'in care' now).

I don't think my husband knew who I was today. This is the first time this has happened. Oddly it didn't upset me any more than I'm upset already - I've lost him anyway now, and as long as he knows I'm someone kind who's on his side, that's enough.

I'm going to set about personalising his room. I'm not sure if he really notices, but he might, and it'll certainly make me feel better.

Thankyou again, lovely people. What a hard road we're all on.

 

[Banjomansmate]

Just remember not to take or leave “precious “ items or original photos at the care home as anything can happen to them,

 

[The Saint]

I think a few of us have added to @sunshine chrissy 's post but it seems a number of us have been in a similar situation over the last few weeks. My husband has been in respite/permanent for a week and a half now and yesterday was my first visit. The home asked to leave it until they thought he was ready. I cried before I went in and really dreaded the visit as I thought he would beg me to come home. When I walked in he gave me a big smile and started showing me "his treasures". He keeps all sorts in his pockets, socks, golf tees, anything his magpie nature can find. He seemed happy and more animated than I have seen him for a while. I was told any activity to do with music attracts him and he will participate. He didn't ask once to come home, he just seemed to have an 'acceptance' of the situation.

This sounds all very positive and it is. I should be happy to see him happy but I'm sad at the acceptance of the situation. It's very difficult to put into words but at home he wouldn't accept carers and had the 'nothing wrong' attitude so it seems a complete turn around. How do I feel? Well it's great to be able to go out and not have to rush back but I feel as if I have been widowed and yet I'm not.

 

[canary]

Well it's great to be able to go out and not have to rush back but I feel as if I have been widowed and yet I'm not

Oh yes, @The Saint . My OH is not yet in residential care and I feel that way.
A member on here coined the term "midow" - a married widow

 

[Slipstitch]

I'm sitting here again crying. It's a bereavement, The Saint, a horrible form of bereavement.
I went yesterday and for the first time I think he wasn't sure who I was and didn't know my name. This is a sharp decline from two weeks ago when he went there (he started memantine at the same time, but I don't think that could account for this). I've brought this about by taking him there, but I can't feel guilty because I had to have respite, so he had to go there and I doubt if this change would be reversible now even if he had been coming home.

He seemed content and smiled at lot at the carers (not at me!). Like your husband, The Saint, he was hostile to carers when we had them at home and they couldn't do anything. I'm glad if he feels ok towards them there. But I was hoping for a smile for me, and something like 'showing me his treasures' but really there wasn't much connection.
I came away feeling better about the home (the staff are just lovely, with just the right approach) but with the knowledge that I have truly lost him now. They say you can stop being a carer and go back to being a wife, but I don't think that's going to happen. I've lost that as well.
I'm trying to keep hearing Violet Jane's words: "Please don't let the contrast between his life and yours prevent you from rebuilding your life after the toll of caring otherwise dementia will destroy two lives rather than one."
I just feel SO SAD.
Thank you everyone for listening. I didn't think I'd be doing these sorts of agony posts, but here I am.

 

[sunshine chrissy]

Sunshine Chrissie - This is my first time back on the forum for several months. When I was last on here, you and I had a lot of parallels. I just wanted to say hello, and tell you that my husband has also very recently gone in for respite, and I've made the decision now that he should stay. Like you I had almost completely forgotten what normal life was like.

His condition has gone beyond what I can manage on my own. We had carers in at home for six weeks - worth trying but it was hopeless because he wouldn't let them do anything and it just made things more difficult for me. So I know it's the right decision, but it's made me feel almost unbearably sad.

It was such a shock on my first visit seeing him in that setting, just another old man in a chair, and the dementia unit is a bit bleak and rather institutional looking. I held it together while I was there but couldn't stop crying afterwards. This business of having to slip away while he's distracted feels wretched, too.

The respite happened rather suddenly so it's a huge adjustment - such an enormous change in both our lives. I suppose I'll get used to it all. Still on the edge of tears a lot of the time. I don't have family so it's just me - sometimes I wish I had a son or daughter to go there with me. I fear I will come to dread the visits, but let's hope not.

Anyway, just wanted to say hello to you again and wish you the courage, strength and resources all of us on this forum need all the time, whatever's happening and whatever stage things are at.

Thank you,I'm really struggling this week,he's been there 2 weeks tomorrow and the visits are no easier,he doesn't seem to have settled at all yet,I've not been for 4 days now but my children have been taking it in turns,I'm not sure it's helping,all he says is oh you've come to take me home🥲I'm going tomorrow with my friend who's a big part of our life,I'm dreading it.I must admit though I'm becoming myself again,sleeping,eating,enjoying the clean house and peace on my own,I've been out with my grandaughter today for a mooch round the shops and a coffee,not done that for a long time! There's an underlying sadness there all the time though,I'm enjoying life and he's not but does he think like that? Oh this is far worse than I thought it'd be,I just wish he'd settle and be some kind of happy there.I keep telling myself it's out of my hands,it wasn't my decision and I know there's no going back,I couldn't cope with it again🥲

 

[sunshine chrissy]

I think a few of us have added to @sunshine chrissy 's post but it seems a number of us have been in a similar situation over the last few weeks. My husband has been in respite/permanent for a week and a half now and yesterday was my first visit. The home asked to leave it until they thought he was ready. I cried before I went in and really dreaded the visit as I thought he would beg me to come home. When I walked in he gave me a big smile and started showing me "his treasures". He keeps all sorts in his pockets, socks, golf tees, anything his magpie nature can find. He seemed happy and more animated than I have seen him for a while. I was told any activity to do with music attracts him and he will participate. He didn't ask once to come home, he just seemed to have an 'acceptance' of the situation.

This sounds all very positive and it is. I should be happy to see him happy but I'm sad at the acceptance of the situation. It's very difficult to put into words but at home he wouldn't accept carers and had the 'nothing wrong' attitude so it seems a complete turn around. How do I feel? Well it's great to be able to go out and not have to rush back but I feel as if I have been widowed and yet I'm not.

 

[sunshine chrissy]

Oh that's so good to hear,I'm so glad for you,there's no way to tell how it will go till it happens is there?Mine isn't settling so good yet,2 weeks tomorrow he's been there but must admit I'm enjoying the peace,sleep and clean house! I've been out and about making the most of it,I'm visiting him tomorrow,dreading it,all he says to anyone who's visited is oh please take me home🥲It's out of my hands now so I've accepted what's coming next,I'm hoping it's permanent care cos I really can't go back there even though I fill up multiple times a day,mainly when a song comes on the radio or a memory pops up on facebook🥲I've got to stop thinking of him upset thinking we've all left him in there.