Husband in care home, I’m lost

[Lilac Blossom]

Hi Baggybreeks and everyone who has posted on this thread. I have husband with vascular dementia in care home for almost a year and can echo the feeling of emptyness and pointlessness in knowing that we can never again enjoy the companionship of our loved one at home. I also do some gardening and find myself thinking I wish J could see this. He has not died but will never again be my companion. I love his so much but living in this limbo state breaks my heart - I did not know that it was possible to experience such sadness and loneliness.

However, it is helpful to read the experience of others here on TP and I thank you all for posting. xx

 

[firevixen 121]

There is a great truth in respect of 'expectation ' and the manner in which it presupposes a situation, i.e. you are going once again to the Home or hospital, knowing that your loved one is unwell, or will be worse or will be in pain or ... whatever? You DO know that things will not improve, let us say in respect of Alzheimer's (my own direct experience) and so, if you can, you go once again to the Home, WITHOUT expectation, either positive or negative. Therefore, you go there without that mental precondition, that 'image' taken from the last time you made the visit. You go there afresh. Then, once there, meet it as it is, in the moment (a rather abused phrase I am afraid to say). Simply owing to the fact that you cannot change a thing, you neither accept nor deny it - both are mistakes. This does not imply that there is a sudden release of all the emotional angst and pain - as stated by others, you can only understand any of this if you have lived it out and felt the complete onslaught of despair which ca be thrown at you - but perhaps you can then address the 'here and now' in a different light. People mean very well when they speak of counselling or 'taking a break' and so on. The problem remains, however, when what is taking place inside YOU, belongs to you and you alone. Communicate with the real YOU and something extraordinary takes place. A choiceless awareness of the situation negates a tremendous burden. Thank you.

There is a great truth in respect of 'expectation ' and the manner in which it presupposes a situation, i.e. you are going once again to the Home or hospital, knowing that your loved one is unwell, or will be worse or will be in pain or ... whatever? You DO know that things will not improve, let us say in respect of Alzheimer's (my own direct experience) and so, if you can, you go once again to the Home, WITHOUT expectation, either positive or negative. Therefore, you go there without that mental precondition, that 'image' taken from the last time you made the visit. You go there afresh. Then, once there, meet it as it is, in the moment (a rather abused phrase I am afraid to say). Simply owing to the fact that you cannot change a thing, you neither accept nor deny it - both are mistakes. This does not imply that there is a sudden release of all the emotional angst and pain - as stated by others, you can only understand any of this if you have lived it out and felt the complete onslaught of despair which ca be thrown at you - but perhaps you can then address the 'here and now' in a different light. People mean very well when they speak of counselling or 'taking a break' and so on. The problem remains, however, when what is taking place inside YOU, belongs to you and you alone. Communicate with the real YOU and something extraordinary takes place. A choiceless awareness of the situation negates a tremendous burden. Thank you.

 

[firevixen 121]

There is a great truth in respect of 'expectation ' and the manner in which it presupposes a situation, i.e. you are going once again to the Home or hospital, knowing that your loved one is unwell, or will be worse or will be in pain or ... whatever? You DO know that things will not improve, let us say in respect of Alzheimer's (my own direct experience) and so, if you can, you go once again to the Home, WITHOUT expectation, either positive or negative. Therefore, you go there without that mental precondition, that 'image' taken from the last time you made the visit. You go there afresh. Then, once there, meet it as it is, in the moment (a rather abused phrase I am afraid to say). Simply owing to the fact that you cannot change a thing, you neither accept nor deny it - both are mistakes. This does not imply that there is a sudden release of all the emotional angst and pain - as stated by others, you can only understand any of this if you have lived it out and felt the complete onslaught of despair which ca be thrown at you - but perhaps you can then address the 'here and now' in a different light. People mean very well when they speak of counselling or 'taking a break' and so on. The problem remains, however, when what is taking place inside YOU, belongs to you and you alone. Communicate with the real YOU and something extraordinary takes place. A choiceless awareness of the situation negates a tremendous burden. Thank you.

firevixen121
Having read your post I thought you put that all so well I certainly couldnt have written it better myself it is only if you are living through this hideous cruel disease that you would understand it. Everything you said is so true I cannot even add anything to it infact I started to reply but had to walk away from the P.C for 10 minutes as the tears were bouncing off my cheeks, mascara running and I was just sobbing. Yes I understand only so well what you are saying and am sure so many more lovely people on this site are all feeling the same but we all carry on somehow but I dont quite know how x

 

[Baggybreeks]

Thank you all for sharing and responding. I too enjoy my plants and want to share the pleasure I get from them. I take flowers in to M as he always liked giving them to me and we can sit and look at them together.
I’m away visiting my daughter at the moment and as I can’t see him for a few days, I asked the care staff to take the phone to him and see if he recognised my voice. Apparently he smiled and listened which was good to hear. As they say, little things mean a lot... even more now.
I do appreciate we have had a long and busy life together. So will try to hold on to the moments.
Thank you for easing my pain.

 

[Caz60]

I am finding that to have the life I was given to split myself into two people is my way of surviving being in limbo.
I am a loving wife and caring and just as I have been over our 50 years of marriage.
I visit most days and don't know what to expect when I get there,sometimes it's a sad visit sometimes it's a calm accepting feeling of a visit.Either way I am not a couple anymore and it's not what I expected just yet at 68 and my hubby is 72 .So ,do I want to live .....i sure do so away from the nursing home I am free from the carers role and am lucky to have made a new circle of friends very similar situation to myself.
Whether it's a coffee lunch or an evening out at a show ..i am happy ...i have forced myself into this position and I'm not saying it works all the time but I owe it to my children to be strong and enjoy what years I have in front of me just as I cherish the years I've had.I feel a better person coping and saying I'm fine I'm ok and meaning it rather than crying and upset and everyone worrying about me .Not everyone can do this I understand that, but surly the love from your partner will keep you comforted ..i feel the love in our home it makes me feel positive.lots of love to all xx

 

[Hazara8]

firevixen121
Having read your post I thought you put that all so well I certainly couldnt have written it better myself it is only if you are living through this hideous cruel disease that you would understand it. Everything you said is so true I cannot even add anything to it infact I started to reply but had to walk away from the P.C for 10 minutes as the tears were bouncing off my cheeks, mascara running and I was just sobbing. Yes I understand only so well what you are saying and am sure so many more lovely people on this site are all feeling the same but we all carry on somehow but I dont quite know how x

A most touching and humbling response. Perhaps the greatest irony of the role of dementia in a loved one, is the fact that it brings about a heightened sense of what we truly are - faults and all. Other debilitating illnessess, whilst certainly challenging and very demanding of all one's faculties, nevertheless remain in the 'here and now' and are confronted within 'normal' boundaries. Dementia in a loved one enters realms which are for the most part, unexplored, simply due to the sheer complexity of the human brain, but more to the point, owing to the fact that the 'loss' of the person we have known, is a living loss, for us, as carer or indeed, partner. By any standards that is very challenging - made all the more so by the unavoidable fact, that unlike many illnessess, Alzheimer's, as yet, has no cure. Thus, we look to our humanity, our ability to engender a depth of compassion, which cannot be found in any book nor be taught, and yet can, at times, bring about solace and mutual comfort. Beyond this, at present, exists the unknown region - that of the world inhabited by the one living with dementia. Is it any wonder that tears are shed and the heart broken? And yet out of that, perhaps, something very special arises. A fundamental sense of what makes us human beings, with the potential to be able to truly make claim to being 'the salt of the earth.'. That has to be wholly worthwhile, despite everything.

And I am quite sure, that you will 'carry on'.