Acceptance

[chucky]

Was at dads home yesterday for about 5 hours and i was just observing him without actually letting him know i was there. He must have walked past me a dozen times and he totally blanked me. I spoke to him a couple of times but he just wandered off and i realised that unless i take his hand and say im visiting i am more or less invisible to him. Funnily enough i actually smiled to myself thinking what a poor soul he is for not realising i was his daughter. There was a time when i'd have been reduced to a sobbing wreck because he didnt know me but it actually made me realise how far Ive come, to accept im no longer part of his world.

 

[Pheath]

A powerful post! I wonder how many others of us would have a similar experience if we were also become observers for the day. It’s a testament to how far along the road you’ve now come that you’re not so affected anymore and have reached such a deep level of acceptance. Wish I could say the same but think I’ve still some way to go....

 

[Christin]

Hello Chucky, I really just want to send a hug. I think there came a time of acceptance for us, too, but its sad all the same.

Very best wishes to you, Chucky.

x

 

[Chemmy]

So glad to hear you have reached this stage. I think it's important for others who are going though the mill at the moment to know that there should indeed come a time when you find you can accept things as they are today, and stop focussing on what's gone before.

I found it all much easier to deal with then.

 

[Mun]

I've found that since I've joined TP & read other people's experiences & of how they try & cope with different issues, I'm much more accepting of the situations I find myself in with my dad,that perhaps last year I would get so stressed about & worry(not to say I don't still worry about him)
Val x

 

[jaymor]

Hopefully I will become more accepting when my husband reaches the stage of not knowing me but not minding not knowing me. He now has spells of not knowing me and asking where his wife is and when will she come to get him and I am so crushed by his sad face and the fear in his eyes. I feel so hopeless as sitting with him and holding his hands does not comfort him or diminish his anxiety and agitation.
Jay

 

[Grannie]

I know what you mean chucky,

I sat with my mam for 30 mins whilst she was attempting to eat her tea, (watching she didn't choke to death) and then wheeled her into the residence lounge. I returned her chair to her room and when I went back to see her, she thought I had only just turned up! I knew she had very little short term memory but not that quick. A few months back I would have left, reduced to tears, but instead I made out that I had only just arrived. So very sad, some days she does not recognise us, but one thing she can do is smile xx

 

[scarletpauline]

Hopefully I will become more accepting when my husband reaches the stage of not knowing me but not minding not knowing me. He now has spells of not knowing me and asking where his wife is and when will she come to get him and I am so crushed by his sad face and the fear in his eyes. I feel so hopeless as sitting with him and holding his hands does not comfort him or diminish his anxiety and agitation.
Jay

This brought tears to my eyes, "his sad face and the fear in his eyes" what a cruel disease this is.

 

[Christinec]

Thanks for posting. I think I have also come to an acceptance. One day I had phoned to ask the nurse how Mum was doing as she has declined quite quickly this year. She said to me you know she is much less anxious and content and we dont think she is in any pain now. She is in a special chair and looks much more confortable then she has for about a year. At the time I was, as always ,upset but I think at some level thinking about this and also the fact that last year Mum was really ill and at one point I felt I was saying my goodbyes to her has also contributed. Perhaps also the fact Mum does not seem to know me at all now.

I am sure that I will not always feel this acceptance but it has been with me over the last few months. I also take pleasure from every word and smile because I know how much these cannot be taken forgranted because I know one day these will also be past.

 

[Mufti]

Wish I could get there!

I spent most of today in tears after my partner stood in front of a photo of the two of us and cried as he explained how much he had loved the woman in the photo - the love of his life - I stood and held his hand as he said this and then comforted him. I have not reached acceptance yet as this incident left me in tears on and off all day and feeling like I don't know where we go from here. Hopefully one day i will accept and not feel this way. Thanks Mufti

 

[florence43]

What a powerful post. Your words speak of peace and acceptance which are what give us the strength to carry on.

I would often watch mum from the door, just imagining what she's like when I'm not there. It did make me sad. She looked so lonely. But my mum couldn't walk anywhere, just sit in silence, and her world was in her head not in that room.

But once she was in her room, and it became permanent, where she was no longer able to be moved to the lounge, she seemed much more at peace which was probably the stage where I finally found acceptance.

They do leave our "life" or our "world" but we never leave theirs and I believe that matters immensely. Whether they know who we are, and why we're there is of no importance at a certain stage. But seeing a friendly, loving face, having personal contact and holding of hands is the richest pleasure we can give. On the whole, heart-breaking but day by day, so very rewarding.

You're doing an amazing job and I am pleased you have acceptance to give you the strength to enjoy your dad in a new way. xxx

 

[Busybee67]

Thank you Chucky for your post. I had a similar situation yesterday with my mum. She was distressed that she could not find her family and i assured her that i was her family, to which she replied "no you are not" and asked me to leave! The reply did not surprise me it was my reaction to her reply that did. I did not feel sad or upset at all and was quite shocked by that. I spent the evening beginning to think that i was becoming some heartless woman and now feel so much better after reading your post. I too i think have now reached that stage where I have accepted that my mum is in a totally different world to me and that she is never going to come back and all i can do is be there to make sure her journey is safe and as comfortable as possible!

Busybee xx

 

[Christin]

Hello Mufti, I just wanted to send you a hug too. Your experience is so different to my own, and it must be completely heartbreaking for you.

xx

 

[rajahh]

My husband sometimes knows me and sometimes doesn't I was getting increasingly tearful, and just not coping. I go to counselling and my counsellor made me face up to the fact that I have to all intents and purposes lost my husband.

I realised that I had been harborouring an impossible dream, I kept imagining if only this " stranger" would go away that my Gordon would come back.

Through a lot of tears last week I have finally reached peace, How long it will last I do not know, but I now am able to care for this " stranger" with tenderness, and not feel resentful towards him or to the limitations which are placed on my life.

It truly is a wonderful place to arrive at.

Love Jeannette

 

[Loopiloo]

A deeply moving thread. I am not yet there, at acceptance, and it helps to read that others are. That in time acceptance can come. I think recently I may have had a brief glimse of it though.

Due to having been in hospital for three weeks in March and housebound since, I went through agonies being unable to visit my husband. Fortunately I have managed, with assistance, four visits over the last two of the past three months. Trying to accept that has been tremendously difficult. Also that it will take time until I can regularly visit as before.

However, I learned from it that my husband's life in his nursing home goes on much as usual for him, it isn't the end of the world for him that I have not been there several times a week. Although it has felt like it to me.

He knew me when he did see me, if not always my name - and I suspect not always that I am his wife. I think there was an awareness of time having passed between my visits, but he has not been distressed, asking where I was, when was he going home etc., as has been the case for many months. I found him content. The staff assure me he has been content, not agitated. He has his 'moments' but they pertain to things such as not always wanting to get up in the mornings until he decides.

Difficult to explain what I mean by having had a brief glimse of acceptance.

During my husband's six months in hospitals and a year (plus 3 days) in a nursing home, my life has revolved around him. Of course, it did that the years we were at home together living with progressive dementia and his increasing dependence on me. But my enforced absence from him has made me realize that his life as it now is no longer revolves around me as it previously did.

It is a hard one to accept - a 'letting go' by enforcement. The realization that the nursing home staff he now knows well and who look after him well are now more in his world than I am.

A letting go of my husband who once was, and the start of accepting how he now is? I thought I was accepting the dementia changes but perhaps I was also in denial, without realizing it? I am still trying to work it out in my head.... A glimmer of acceptance?

Loo xx

 

[Sox]

Hello all - I am in a similar situation but because my husband is totally unable to communicate, I don't know if he knows me or not. Everyone assures me he does, but I don't think so as he treats me exactly the same as the carers or any friend who pops in. He may know that I am the constant in his life, but I don't think he really knows me. However I find I am able to accept that and have realised that I "lost" my lovely husband years ago. In lots of ways I think that at last I am more accepting of the situation than others in the family and that makes it easier for me to put him into respite and take a break. Thinking of you all. Take care. Sox

 

[Chemmy]

A letting go of my husband who once was, and the start of accepting how he now is? I

That is the key, and with that should come the realisation that life for you, too, must go on. Above all, please don't feel guilty about doing things for yourself; visit when you can, but don't feel compelled to let these visits run your life. He's safe and content; that's about as good as it's going to get.

So go out with friends and family, make new friends, take up a hobby, treat yourself to some pampering, whatever makes you feel good. We all only have one life; we should make the most of it whilst we are able. Funnily enough, I suspect that if you could consult with your husband about this, he'd be saying the same.

 

[rajahh]

when y daughter and grand daughter died 3 years ago I felt drawn to the grave as the only place I could " reach " them. This in a way is similar I feel to the position I amnow in with my husband who has dementia.

I am not sure where I can " reach" him but as he lives at home still he is always here .

Now I have accepted that my daughter and grand daughter are here within me and I do not visit the grave very often Oh I go and tidy it up etc but I do not feel badly for not going.

I am not neglecting them I carry them with me, and in the same way when someone you love disappears to this dreadful disease, then you can still carry the real person with you, and hopefully accept that the person they have become does nothave the same ties with you so you do not need to feel guilty about not visit9ing, or indeed of making some sort of life for yourself again.

I feel I have waffled a bit here, I know what I am trying to say, I hope you can see it too

Love Jeannette

 

[chucky]

Hi Thanks for all the posts it is so good to be able to talk with people who are all sharing the same illness, coping in our own ways, but giving hope to some who are still struggling. It took me 3 years to finally find acceptance of dads illness and there has been a lot of heartache and sorrow along the way. Its been tough, its been sad, its been emotionally draining, but its also been a huge learning curve for me. I never realised how much i loved my dad till he became ill, and i might never have known if he hadnt got dementia, so in a way its been rewarding for me in that sense. I found my dad but sadly dementia found him first, that part is hard to get your head around. We've been through a lot and theres been many a tough time, it has by no means been plain sailing. There was a period in time that i found it very hard and my own mental health suffered enormously. However, what doesnt kill you makes you stronger and i live my life by that motto. I honestly cant think of anything in life that is tougher than caring for a dementia sufferer and some people take longer than others to find acceptance. I still have days when i cry but they are few and far between, i am as happy with my life as i was before dementia sneaked in to the equation and thats a statement i could never have made a few years ago. To all of you that are still struggling dont give up, there will come a day that you will find your way to cope and life does get easier.