2 years on.

[Davebyrne]

My wife had a heart attack 2 years ago but despite rescus she suffered catastrophic brain damage. Linda is PEG fed has minimal speach (may say "Hi, fine " etc. early in the morning) to the carers she does recognise me, my daughters and the grandchildren with smiles etc. She has very limited voluntary movement but does struggle to sit up especially when she is sitting. Linda is now in a nursing home. I am struggling knowing that she may never be well again, speak to me, and being apart is horrible, we have been married for 46 years and constantly together, it is like being in constant limbo land, I've had counselling but the loneliness is awful, can anyone give me help, there is always hope.

[Stardrop]

Dave, you are in limbo, you are probably feeling 'survivors' guilt (why her not me) and I bet a lot of your 'friends' have backed off. Please try to find something you can do to socialise and enjoy yourself on a regular basis. If you were a girl I'd say try a knit and natter or some sort of craft activity half a day a week so perhaps helping a stroke club gardening group, walking a neighbor's dog whilst they are out at work.

You need to have a laugh, chat to people. Go out walking with people, sadly there are many lonely people.

Feel free to post on this board as people will reply to you.

[cat3]

Dave, we don't need to be bereaved to grieve for the loss of someone precious. You've reached a point where hope of Linda's recovery has faded and the prospect of a very different life is too difficult to face right now.

But the loss of the person you knew will be hitting hard after such a long period of hope, and your loneliness is something which will take considerable time to get to grips with.

It can be the worst kind of loneliness when the person we have spent a lifetime with is still here but not 'with' us any longer and, though you've had counselling, it looks like you need to keep talking to make sense of this massive change in your life.

My brother died a couple of years ago and, although it was heart-breaking for me, my sister-in-law had shared 45 years of her life with him and was left totally bereft. But myself and other family members encouraged her to keep talking and rationalising her emotions over a period of 2-3 years, 'til she had come through the first stage of loss.

The guilt of looking elsewhere for solace (children, grandchildren, friends, outings etc., can stop us from the essential process of distraction, and will feel even greater when the person is still around, but we badly need those distractions to keep ourselves strong.

I suggest you keep on talking, to anyone who'll listen. There are always folk here ready to spend time with you and you can get extra professional counselling from Headway by contacting the helpline on 0808 800 2244 (free call - office hours) which I really do recommend, because you have quite some way to go in finding your way Dave.

Please try to keep sharing your thoughts ; it really does help.

And let me add how truly sorry I feel for Linda's predicament and for your sadness. With love, Cat x

[Alibongo60]

Hi Dave, you and your wife have really been through it, I work in a care home, so can understand the stage she is at. Yes there is always hope, but I think you have to accept how she is now and continue to support her but you have a life to lead as well. I know a gentleman similar to you who visited daily and used to make drinks for visitors, he chatted with other residents and became invaluable to staff, maybe have a chat with the manager see if there's something you can do at the home on a voluntary basis, that way you spend time with your wife while helping others, good luck and I hope things improve for you xx

[Hidden]

Oh Dave this must be so hard! Sadly it is not likely that her brain will be able to heal significantly after all this time - your neurologist will give you the latest advice of course. I am in the reverse position - I am the one with the TBI and due to undiagnosed hypoventilation and anoxia I have memory problems and neurological deficits which are getting worse. I feel very strongly that I do not want to be a burden on my husband and children (now young people!) and also not a financial drain. But that aside I would offer you this perspective: imagine that you were in conversation with your wife as she was - you knew her very well. What would she say to you? Sadly she is unable to do anything now but if she could what would she say to you?

I know that one of the things that I would say to my husband is that hey we had many good years and produced two wonderful children and contributed a lot in our time - and you are still! If I have now effectively gone please don't worry about me - except to check that I am being properly cared for. Get on with your life - I want you to be happy!

(My husband and I have an agreement that if I become 'lost' he will end my life using pure nitrogen - this is quietly becoming the preferred method as it is very pleasant for all concerned as our brains cannot tell that there is no oxygen in it and hence there is no sensation of suffocation - one just goes a bit high and falls asleep. Evidencing it through contract and possibly video will be accepted by the courts and become case law - when someone is up for going public that is...)

[TaIaV]

Dear Dave,

I don't know if your comment about there always being hope refers to hope that your wife's capabilities will improve or hope that your emotional distress will improve.

There is certainly hope regarding your wife's situation, but that is a rather constrained hope, with downsides. I know that well-intentioned people sometimes focus on that hope, because they want to cheer you and themselves up. When, in fact you know that that possibility is small, it can just make you feel more lonely (like people are not really listening to you) and it can make you feel guilty for not being more upbeat. Those effects undermine you. If any of this is happening, please listen to those who have written already: Compartmentalize this hope, keeping it there, on one side of your life, ready to activate if there is some real sign of improvement.

There is great hope for your emotional pain to improve. I am guessing that you have been wrapped up in very turbulent times that may have involved crisis, hospital, total uncertainty about what would result, home modifications, home care, various other crises, tons of new learning, searching for a good nursing home , managing that transition and setting up a new routine for your life with each change in hers. This may well have dominated the 2 years, leaving scant real time and energy for making the substantial emotional discovery and adjustments that can take you to a new peace. All this leads me to say: Be gentle with yourself. Don't think that you will always feel as you do now. You are right about where you could expect to be given all that has happened. But you are also right at the point at which you can start to heal and establish a new balance of happiness and sorrow. The fact that you reached out to this group is one indicator of that.

Practically, I will be so bold as to give this additional unsolicited advice: If appropriate, establish a new basis of physical health (some exercise, better eating habits, drink water). This will enhance your energy and outlook, setting a great foundation for your further counseling and exploration of interests and service opportunities.

Wishing you the best as you grieve, gain the acceptance of the situation and explore the ways that light and joy can reenter your life.

Taia