Conversation

[Lilac Blossom]

I visit hubby in care home most days - mostly he does not know who I am, keeps asking "what did you say your name was", conversation non-existent and yet carers tell me he is such a lovely man who is very chatty when they are getting him washed and dressed in the morning. Similarly at bedtime they have "lovely chats".

Although I have heard this mentioned by others, visiting is very hard for me. This strange life in which I am in limbo is something other people do not understand - Oh you still have each other they say - how little they know of the loneliness of living like this. Relatives and (former) friends back off and it's only on TP that we can expect understanding.

Sorry but I am feeling particularly down at the moment so thank you for reading this - it helps to have support from TP.

Bless you x

 

[marionq]

Totally understand your situation. This is the slow death or simple withdrawal from life that dementia brings. It will continue unless you make changes. You still have the gift of life and so you have to look for things to do which make it worth living. Are there any rambling groups in your area? Any clubs where you might talk with others and meet up with them for coffee. Are you young enough to be volunteering at your local primary school?

There is so much life out there but we have to go looking for it or dementia has beaten us.

Good wishes.

 

[Kjn]

Aww I understand , I visit dad and he thinks I'm one of the staff usually, often get "what now"? As I walk in
He is bett some days than others , carers say has been chatty etc.
He sometimes asks mum who she is , mum feels it same as you in limbo, feels she is stuck not knowing what's next
PWD ..They are there but they arnt there.
It's hard but we keep going, xxx

 

[canary]

You are in the state that has been referred on here as a "midow" - a married widow - and you are probably suffering anticipatory grief. Perhaps counseling might help to come to terms with it. If you feel it is past that stage please do go and see your GP. A while back everything felt totally black to me and I was considering ending it all, but my GP has put me on antidepressants and Im beginning to feel better.

Once you are feeling better then I agree with marion - try and find a source of friendship/companionship and joining an activity or learning based group is ideal. Join a yoga group, knitting group, rambling club, bridge club - whatever your interest is/were/would like to be; or take evening classes - learn anything from a new language to car maintenance; or volunteer at your local library, school, charity shop or dog centre.

There are things out there. Just take a deep breath and join in. If you find an unwelcoming group (unlikely, but does sometimes happen) try somewhere else. You will not be abandoning your husband, you will still be visiting, arranging things and liaising with the staff, but try and find something else - just for you - as well.

 

[irismary]

Hi Lilac Blossom. My husband has been in a home now nearly 9 weeks. He is settled and happy, lets staff bath him, laughs at and with them, sings in bed, lets them get him up, take him to the loo, feeds himself. Why wouldn't he do that for me so he could still be at home. Who knows, but he wouldn't. Its hard but if he is happy, pain free and content what more can I ask. He knows me I think, smiles when I get there - I have only missed one day so far - mostly is ok when I leave, occasionally he looks a bit sad or confused but mostly fine. Days are fine, but evenings, night time and getting up first thing are hard. You are right - no-one other than on TP understands the sadness, the loss, the hurt, the guilt, the loneliness. Its difficult to take a step into a new life but we need to. I remember my mom going to a tea dance a while after my dad died as she saw people she knew going. It was at the local church hall. She thought people would think badly of her! A tea dance at a church hall! Best thing she could have done - made lots of friends, went out often including holidays. How about the WI, there is bound to be one local to you. Charity shop perhaps. Take care of yourself xx

 

[DMac]

LilacBlossom - so sorry to hear about your situation and the loneliness you are feeling. My OH and I have been visiting my mum-in-law in her care home once or twice a week for the past year. I appreciate it's not the same at all compared to your situation, but still, I sympathise as the visits are getting harder as she becomes more confused and incoherent.

I agree with the others - try to find an outlet that you would enjoy, something just for you. It might take a while to find the 'joy' in enjoyment, but keep persisting and you will be rewarded.

Might I also be so bold as to suggest, maybe, you cut down on the frequency of your visits? This might sound harsh and counter-intuitive, but consider whether he would really suffer if, say, you cut out one visit a week? Maybe give it a try - he might not even notice, and YOU might benefit from more 'me' time.

Canary - so glad to read that you are feeling better now. Really pleased for you. xx

 

[Amethyst59]

Lilac Blossom...I'm going through this for the second time. My late husband had cancer for five years before he died, but we both knew the end was inevitable...I felt like a medieval woman who's husband had been condemned to death, we knew it was coming, but not when. I joined a choir, when he was first diagnosed (the prognosis then, was death within three months, so I left my teaching post). I sang with them through the five years of his illness...I sat and cried while they sang, after he died...and then sang again. They have seen me through the death of a beautiful granddaughter...and they are supporting me again now, with a husband with dementia. I belong to the WI too. Sorry, this is a bit of a ramble...but the message is, set up things for yourself now and it will support you, not only now...but also later.

 

[PalSal]

Lilac Blossom...I'm going through this for the second time. My late husband had cancer for five years before he died, but we both knew the end was inevitable...I felt like a medieval woman who's husband had been condemned to death, we knew it was coming, but not when. I joined a choir, when he was first diagnosed (the prognosis then, was death within three months, so I left my teaching post). I sang with them through the five years of his illness...I sat and cried while they sang, after he died...and then sang again. They have seen me through the death of a beautiful granddaughter...and they are supporting me again now, with a husband with dementia. I belong to the WI too. Sorry, this is a bit of a ramble...but the message is, set up things for yourself now and it will support you, not only now...but also later.

Dear Amethyst--how brave you are. So sorry to hear of all your loss and suffering. Life is hard. I am 63 and as you know about 15 years into our dx. I am sure I will never marry or have another relationship if I outlive my OH, which I doubt. I would be scared to death of having to do this again care for someone who is deteriorating before my eyes on a daily basis, I am basically selfish and would not be able to go through it all a second time. Poor you. take care.

 

[Lilac Blossom]

Thank you for all the lovely replies - suggestions and advice which I shall take on board. Midow is such an appropriate word for how I feel - "married widow". Evenings, especially now that it's getting dark earlier, and also first thing in the morning, I am finding quite hard.

"It might take a while to find the 'joy' in enjoyment, but keep persisting and you will be rewarded." Yes I do feel little joy in anything at the moment but thanks for reminding me to keep persisting

Amethyst you have had so much heartbreak in losing your first husband, then your granddaughter and now your husband has dementia, and yet you are posting an encouraging message for me.

I used to be a member of a walking group and have found out today that it is still going strong so I intend getting back into that. Walking and chatting seems a good combination.

I believe the local library has a reading group and also a Knit and Natter group and I intend to find out about that.

Reducing visits a wee bit seems a good idea too.

Thanks - I really appreciate your help.

Lilac x

 

[Lilac Blossom]

Thank you Baxter

Sorry that you are also in this strange limbo situation - it is indeed a very lonely place in spite of the fact that so many of us inhabit limbo land.

I appreciate your kind good wishes and send the same to you. xx

 

[Suziesibb]

I visit hubby in care home most days - mostly he does not know who I am, keeps asking "what did you say your name was", conversation non-existent and yet carers tell me he is such a lovely man who is very chatty when they are getting him washed and dressed in the morning. Similarly at bedtime they have "lovely chats".

Although I have heard this mentioned by others, visiting is very hard for me. This strange life in which I am in limbo is something other people do not understand - Oh you still have each other they say - how little they know of the loneliness of living like this. Relatives and (former) friends back off and it's only on TP that we can expect understanding.

Sorry but I am feeling particularly down at the moment so thank you for reading this - it helps to have support from TP.

Bless you x

Lilac Blossom I feel your pain. Try to feel good that he talk to carers it's good that he tries. He perhaps feels he doesn't need to try as it's hard work. There are days now when mum doesn't want to talk. Sometimes she knows me but a lot I'm just someone special snd that's ok.
I have five things that the present time she seems interested , weather sun clouds rain. Flowers in her room have opened more, I tell her what I've done ( often make things up to entertain! )
Check snd discussed the biscuit supply I take her snd replenish.
Ring my sister sometimes so she can listen. Doesn't have to talk but feels like she's involved. Don't feel like you have to stay long. It's quality big quantity that counts and Don't Ask Questions. Because it's a nightmare fir them and it emphasis their problem to them.
You could ask carers to make a note for you of what he talks about. Best Wishes.