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New to forum - Carers UK Forum

New to forum

Tell us a bit about yourself here.
Hi everyone, I have just joined the forum after receiving information about the site following a call to a help line.
I am hoping that reading your posts and comments will help me cope better with life.
Hi Barry. Welcome to the forum.
I found the site when my husband had strokes and then diagnosed with vascular dementia. He is now in a nursing home. Life is very different and heartbreaking for me but the forum has helped me tremendously.
Can you tell us about yourself?
Pet66
Hi Barry, welcome to the forum. I have cared for a total of ten relatives, in various ways. Now there's just my 37 year old son, who has severe learning difficulties. Whoever you care for, we all have many things in common, as carers. If there's something you are struggling with, share it here. Usually there is someone who has faced the same problem.
Yes, there's a huge amount of collective experience, and a very good measure of expertise itself, both amongst members and, of, course in CuK folk themselves.

What, at the moment, in your own caring situation, do you feel you want to be able to cope with better?
92
Lets hope we can come up with some helpful suggestions! :)

Though often, it's a case of knowing that the problems you face are 'understood' here, as we are all carers in one way and another (my caree, hands-off now, as she is in a dementia care home, is my 92 yo MIL.), so we do sympathise.
Hi Barry and welcome to the forum! Have recently joined the forum myself and care for my Mum who has a rare stroke disorder . Can assure you that you will find much helpful advice and good friends here and we are all in the same boat here so to speak as carers albeit caring for various members of our family . :)

Look forward to meeting you and take care .

Sue
Thanks to all of you for the warm welcome.
My wife suffered a very sever stroke on 2nd Jan 2015 which has left her paralised with a peg feed and trachi. Yvonne was in hopsital for 8 months and has been is a care home since September 2015. Over the last 20 months I have seen some slight improvements but feel we are now where we are going to be. I have only recently started to accecpt the fact that my beloved wife may never come home again and to be perfectly honest it is the future, without Yvonne that scarers me.
We have been married for just over 34 years and the majority of this time everything we have done we have done together and the thought of having to do things without her is very hard to cope with and because of this fear the last 14 days have been a nightmare. I have not had one day where I have not been in tears at least once in the day and feel like things are getting too much.
I know there are others out there who are having the same issues and just being able to hear how they cope will help me to cope,
Hello Barry
Oh I do understand. It's very hard to come to terms with the fact your much loved spouse won't be able to return home. I still struggle. However I know that my hubby is well cared for 24/7. Unfortunately and sadly I am not able to do that. Can you start teaching yourself that being cared for by experienced staff is in your wife's best interests so it's in your best interests too. You can conserve energy for your visits.
Have you been referred to the stroke society? Have you been to your GP to explain how you feel? The tears will flow, the anger will come and go and you will feel bereaved. You are going through bereavement. My husband hasn't been home for nearly 9months now. We've been married for over 48years. I do have my children and grandchildren to support me as I do them. I'm not much help I fear but I truly know how you are suffering.
Others on the forum will be along to support you. My thoughts are very much with you
Barry I was widowed after 34 years - what you are going through now is, in many ways, the same grief. The knowledge that plans won't be fulfilled, the loss of so much. I think in many ways your pain is probably even greater than mine. Acknowledge that it is grief, allow yourself to be tearful and angry at the injustice of it all. Building a new life is difficult, impossible overnight. Just take it one day, one hour at a time. Gradually you will move forward once more, but for now, allow the tears, they are better out than in.
Trying to keep going every day is getting harder and harder and I feel it is becoming impossible! I have not, as they say "had a day off" since Yvonne became ill and have been with her as much as possible every day since 2nd Jan 15. I know everyone is thinking about my health when they tell me to take a break and not come in to see Yvonne for just one day but I cannot do it, I need to see and be with her yet being with her hurts so much.
It may sound like self pity but I feel so insecure at the moment and being with Yvonne helps me feel better although when I am with her I do not know what to say and spend most of my time holding her hand and stroking her hair and telling her I love her.
Barry. Yes I really understand that. When I'm not with hubby I desperately want to be with him. When I'm there ,to be brutal I'm looking at the clock. Ive cut my hours down now. Started with making the visit a little shorter, then one of the days I had no choice about taking the day off. Was racked with guilt. Just to discover hubby was still well looked after and the day made very little difference. Can you try making a visit a little shorter to start with.? I've actually witnessed a visitor doing the same as you. Eventually became so poorly there were no visits for a month. Fear this can happen to anyone.
I love my husband dearly. Would rather the shorter visits are quality, ratherr than quantity, for both our sakes.