How do we survive?

[Unhappy15]

Hello to everyone on TP.
I am desperate for advice. My OH is in care and has been for two and a half years. The home and the staff are very good. He does not talk very much but seems relaxed and always smiles and kisses me when I make my daily visit, I suppose you could say he is now at a stage in this illness where he just is. He is like a lovely child.
I know I should be thankful, I read the posts here and I know that we are fortunate to have come through so much, he was violent at one point and was sectioned, but now all seems calm.
The problem is that I cannot accept that he is 84 has dementia and it will not get better.
I am 12 years younger than him but I always see him in my mind at about 55, I expect one day to walk in the home and that's how he will be.
I just do not know what to do, I sleep badly, I think of him constantly, I just want back what I have lost and I know that is never going to happen.
I do go out with friends and try to rebuild some sort of a life, but it's not what I want, I just constantly cry, my heart aches and I'm scared, sometimes the pain feels too much to cope with.
I am sorry tobe such a misery but can anyone help?

 

[canary]

You are not being a misery - this is called ambiguous grief. You are grieving for the husband you had, even though he is still here. Any sort of grief takes time to work through. Have you tried going to a counsellor? Be gentle with your self, you are doing all the right things by going out and trying to rebuild your life, but it will take time.

 

[kindred]

Hello to everyone on TP.
I am desperate for advice. My OH is in care and has been for two and a half years. The home and the staff are very good. He does not talk very much but seems relaxed and always smiles and kisses me when I make my daily visit, I suppose you could say he is now at a stage in this illness where he just is. He is like a lovely child.
I know I should be thankful, I read the posts here and I know that we are fortunate to have come through so much, he was violent at one point and was sectioned, but now all seems calm.
The problem is that I cannot accept that he is 84 has dementia and it will not get better.
I am 12 years younger than him but I always see him in my mind at about 55, I expect one day to walk in the home and that's how he will be.
I just do not know what to do, I sleep badly, I think of him constantly, I just want back what I have lost and I know that is never going to happen.
I do go out with friends and try to rebuild some sort of a life, but it's not what I want, I just constantly cry, my heart aches and I'm scared, sometimes the pain feels too much to cope with.
I am sorry tobe such a misery but can anyone help?

Oh my dear, all my thoughts. I am same age as you and my OH has been in care for five weeks now and like you, I visit daily. Every day my heart seems broken, I am going through this too. You are doing the best thing in trying to rebuild your life and of course it will not feel what you want. How could it? Grief is normal, that's what I tell myself. I think it takes all our efforts to find some glimmer of light in this situation. Please keep posting, it's so good to hear from you. This forum really helps, we can be ourselves and tell it like it is, the depth of our heartbreak and all.

 

[Izzy]

Hi there.

I'm so sorry that things are so bad for you just now. My own husband was never in a care home but I do recognise your feelings. He was 21 years older than me but honestly looked around the same age as me. I always held him in my mind as a younger person so I think I know what you must be feeling. He passed away in July 16 at the age of 86 but to me he still felt like my young (er) boy.

There's no easy answer to it. It won't help for me to tell you that it will get slightly easier with time but that's the case. Perhaps easier is the wrong word. I think we grow more used to our situations. My heart always broke for my husband as his Alzheimers progressed and he could do less and less. We just soldiered on and I think an acceptance grew.

As I said he was never in a care home so my experience can't be the same as yours. I just feel so much for you. Please keep going out with ypur friends and so on. It may not be what ypu want to do now but I think it will help eventually.

I'm glad you've shared on TP and I hope that helps just a little. Remember there is always someone here to listen to you and understand.

 

[karaokePete]

You are not alone @Unhappy15 and canary has already given good advice and TP will be here for you.
Would talking to someone on a help line be of any assistance to you? Whilst AS has it's own helpline, there are also others that may be of benefit, details as follows
National Dementia Helpline
0300 222 11 22

Samaritans: Call 116 123 or email jo@samaritans.org

Open 24 hours, 365 days a year

Age UK: Call 0800 169 2081

Open 8am-7pm, 365 days a year

Mind: Call 0300 123 3393, email info@mind.org.uk or text 86463

 

[Beate]

You could ask your GP to refer you for grief counselling? Because this is what this is. In dementia, we grieve before a person dies, because we have lost that person and the life we lived with them already.

 

[maryjoan]

You could ask your GP to refer you for grief counselling? Because this is what this is. In dementia, we grieve before a person dies, because we have lost that person and the life we lived with them already.

I so 'get' what this is all about - lots of lovely people on here have explained it to me. It's horrid, isn't it, you look at the person, but you cannot see where they have gone to. They have left you behind, and it's almost like a betrayal of all you meant to each other.
I am still at the stage where there are sometimes 'little windows' where he is himself again, but it does not last for very long, minutes maybe.

The only comfort I can offer you, if any, is this:-

" It is said that time is a great healer - it is NOT
we just learn to live with something we cannot change..."

Its the learning that is hard, but we are all here in the same leaky old boat, and you will have days that aren't too bad. Earlier on this week I was distraught because my OH pees in the wash hand basin ( gross or what?) But today, it doesn't bother me - I don't know why.......

 

[Unhappy15]

Thank you all for you kindness, I suppose it's a situation where heart and head do not match. On good days (very few) you can think that we all have to die of something and this is my husbands way and I have to accept it.
But on most days I just want to scream, I hate to see couples together, it just underlines the fact I am alone and I don't want to be. I hate dementia with every part of me, it is so cruel, I feel it takes you both.

 

[Trapisha]

Hello to everyone on TP.
I am desperate for advice. My OH is in care and has been for two and a half years. The home and the staff are very good. He does not talk very much but seems relaxed and always smiles and kisses me when I make my daily visit, I suppose you could say he is now at a stage in this illness where he just is. He is like a lovely child.
I know I should be thankful, I read the posts here and I know that we are fortunate to have come through so much, he was violent at one point and was sectioned, but now all seems calm.
The problem is that I cannot accept that he is 84 has dementia and it will not get better.
I am 12 years younger than him but I always see him in my mind at about 55, I expect one day to walk in the home and that's how he will be.
I just do not know what to do, I sleep badly, I think of him constantly, I just want back what I have lost and I know that is never going to happen.
I do go out with friends and try to rebuild some sort of a life, but it's not what I want, I just constantly cry, my heart aches and I'm scared, sometimes the pain feels too much to cope with.
I am sorry tobe such a misery but can anyone help?

"Unhappy 15 I'm sorry you are feeling like this but i know how it feels its my mom that has
this vile illness and i thought last july when it all came to light that i would have to go into
hospital because i couldn't stand the way i was feeling it was the worst feeling I've ever
had my stomach was nervous all the time i had to go onto medication for anxiety because
i would wake up every morning so very frightened that the phone would ring to say something
awful has happened. Its taken me 9 months now and i am dealing with it kind of! still
getting days when i want to curl up on sofa and stay there for ever, but also days when i
feel a little better. My life has been turned upside down and hate every day but somehow
dealing with it. Then i read about anticipatory grief and think that must be what i have
been going through because i thought i was the only person that has ever felt like this
i thought everyone else just deals with it. i am still not myself but have improved from how i
was from having panic attacks and lying on sofa most days not wanting to do anything all
my interests had gone. I know its your OH but i think you have been going through this
anticipatory grief too its the worst feeling, but only time can help you face it and start
doing things again and accepting the way it is. I still have a long way to go but hope
that i can get stronger as i can help mom instead of wanting to run away and crying
all the time. I hope you can too. My anxiety has improved but still frightened in a calmer
way if that makes sense and i think i wonder if i will ever feel normal again and wake up
in the mornings with no worry how lovely that would be but people tell me this is life.
Why does if have to be so painful. I hope reading all the posts on here helps you know
you are not alone. xx

 

[Hazara8]

Hello to everyone on TP.
I am desperate for advice. My OH is in care and has been for two and a half years. The home and the staff are very good. He does not talk very much but seems relaxed and always smiles and kisses me when I make my daily visit, I suppose you could say he is now at a stage in this illness where he just is. He is like a lovely child.
I know I should be thankful, I read the posts here and I know that we are fortunate to have come through so much, he was violent at one point and was sectioned, but now all seems calm.
The problem is that I cannot accept that he is 84 has dementia and it will not get better.
I am 12 years younger than him but I always see him in my mind at about 55, I expect one day to walk in the home and that's how he will be.
I just do not know what to do, I sleep badly, I think of him constantly, I just want back what I have lost and I know that is never going to happen.
I do go out with friends and try to rebuild some sort of a life, but it's not what I want, I just constantly cry, my heart aches and I'm scared, sometimes the pain feels too much to cope with.
I am sorry tobe such a misery but can anyone help?

'Loss' of someone dear to you, who is still here, is both profound and extremely demanding of a 'willingness to accept.' As has been stated, the term often used is 'Anticipatory grief'. The one who you knew, say as 55 years of age and, held in your mind's eye, much like a photograph in an album, with all the attachments that this image entails, no longer, physically, exists. The husband, now 84 DOES physically exist, in FACT. Physically, this is the 'what is'. Denial of that, invites perpetual conflict and pain and perhaps fear. But this is not the whole story. Whilst FACTS are just that and cannot be denied or changed, like that morning sunrise, there is an overriding truth here which also, cannot be denied. The husband, who is now 84, is STILL not only the 55 year old husband, but the WHOLE being, the child, the youth, everything from birth, is there. None of that can be changed. Not ever.

Allow me this, please.

When my late mother was in hospital, I provided the medical team and the Healthcare Workers with some photographs. Mother was 99 and subject to Alzheimer's disease. One of the photographs was of a seven year old little girl with long golden locks, wearing a pretty frock, seated rather nervously on a large chair. One day, a Nurse noticed this picture and when I told her that it was my mother, she actually shed tears. This very nice, professional nurse who had been tending mother (who was sleeping most of the time) suddenly realised that this frail, bedridden, dementia-afflicted elderly lady and mother, had once been just a small, vulnerable, pretty little girl, who had played and laughed and been loved dearly by a mother and a father, from birth.

I said to the nurse, 'that same child lives in my mother, even now'. I had seen it in her eyes, in her smile, in her vulnerable expression brought about by a dementia which engenders anxiety and fear. In the holding of a hand, to calm her in the dead of night. Despite her aged body and her deterioration, that little girl was still there and there in FACT, not 'in mind'. And therefore, even with the dementia and the 'loss' of the mother who I was living with some 12 years before, this did not change who she truly was. This was how I came to terms with everything you cite so painfully. Seated at the bedside of my mother, 'in the moment' as it were, with the true mother, the existing mother and the mother who was still - the little girl, the art student, the young mother, the widower, the elderly lady, all of that - but above all, the living breathing mother.. In that way, you could be in touch with the whole person NOW, in the present and not be trapped by a past image which, like a photograph, fades and is gone.

This is my story. Your own belongs entirely to you. But, if it in any way casts aside some of those clouds of despair and enables you to "accept", then so be it.

And with it, I send my warmest wishes.

 

[Caz60]

I have read your posts with great interest and realisation that instead of me feeling like I'm not normal anymore,I too must be suffering from Anticipatory grief.
I feel exactly like yourselves I have been trying to deny what has to be and when I feel I am getting there I loose confidence and start shrinking again feeling unsettled and not sure what to do with myself .I am getting there so to speak ,I look better in my face I am told but still got a long way to go.
My hubby with Lbdementia and Parkinsons has been in a nursing home since February, but I have cried and struggled for 7 years ....
It's my birthday tomorrow and although I am declaring it here I don't want to tell anyone I don't want to celebrate without my hubby ..i just want peace and quiet ...maybe next year.
Love and Hugs to all of you ,it will get better,I'm sure...xx

 

[Trapisha]

I have read your posts with great interest and realisation that instead of me feeling like I'm not normal anymore,I too must be suffering from Anticipatory grief.
I feel exactly like yourselves I have been trying to deny what has to be and when I feel I am getting there I loose confidence and start shrinking again feeling unsettled and not sure what to do with myself .I am getting there so to speak ,I look better in my face I am told but still got a long way to go.
My hubby with Lbdementia and Parkinsons has been in a nursing home since February, but I have cried and struggled for 7 years ....
It's my birthday tomorrow and although I am declaring it here I don't want to tell anyone I don't want to celebrate without my hubby ..i just want peace and quiet ...maybe next year.
Love and Hugs to all of you ,it will get better,I'm sure...xx

Sending you peace and quiet on your birthday xxx

 

[kindred]

I have read your posts with great interest and realisation that instead of me feeling like I'm not normal anymore,I too must be suffering from Anticipatory grief.
I feel exactly like yourselves I have been trying to deny what has to be and when I feel I am getting there I loose confidence and start shrinking again feeling unsettled and not sure what to do with myself .I am getting there so to speak ,I look better in my face I am told but still got a long way to go.
My hubby with Lbdementia and Parkinsons has been in a nursing home since February, but I have cried and struggled for 7 years ....
It's my birthday tomorrow and although I am declaring it here I don't want to tell anyone I don't want to celebrate without my hubby ..i just want peace and quiet ...maybe next year.
Love and Hugs to all of you ,it will get better,I'm sure...xx

It will and I am so moved by your description of yourself as losing confidence and starting to shrink again ... This is something I have to battle against all the time. I felt that my inability to influence the situation diminished me and made me invisible. Remember we are coping with awful trauma and shock all the time. It will make us forgetful, too and drain our energy. It's normal to deny what has to be in this situation. Not sure how we confront it, how can we? Thank you so very much for posting and raising these issues as you have, thank you.

 

[Caz60]

It will and I am so moved by your description of yourself as losing confidence and starting to shrink again ... This is something I have to battle against all the time. I felt that my inability to influence the situation diminished me and made me invisible. Remember we are coping with awful trauma and shock all the time. It will make us forgetful, too and drain our energy. It's normal to deny what has to be in this situation. Not sure how we confront it, how can we? Thank you so very much for posting and raising these issues as you have, thank you.

Thankyou ,it is such a massive help being able to speak and be understood if I can help someone else through a situation that makes me in return feel better .
Much love to one and all xx

 

[Trapisha]

I know how you feel. I too live my life in a complete limbo. My OH is deteriorating in a secure mental health unit. I feel that I am enduring the first bereavement. I sleep fitfully, some days I cry but fear that if I give in to crying too much , I may never stop. I still hold down a part time job but that can be difficult because so many people know my man and ask after him constantly when I'm at work. However, going to work gives me a reason to get out of bed three days a week. I take weekend breaks at least three times a year, by myself, but at least it's an opportunity to step away for awhile. Having said that, I call the hospital every day whilst I'm away and can get to the hospital in 30 minutes if needed. I would love my man to come home so we could share what time he has left together but I know this can't happen. We were having such a great life together before this happened. It's awful that such bad things happen to good people like my lovely man who worked hard and would do anything for anyone. Best wishes.

Yes Baxter 1 it seems to happen to the best people doesn't it? My mom is the kindest person
and would do anything for anyone always making a situation better if i was worried, and now
no conversation this life is just not fair !!! xx