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want to join in - Carers UK Forum

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Hi All,
I've just joined and am trying to find my way around the site.
I've just read Stacey's post and feel Stacey that you do need a carer's assessment and help to get help for your mum and yourself, you are quite right, you should be going out doing fun things and getting on with your life. Your situation makes me feel grateful for mine...looking after my husband of 30+ years who has a nasty neurological condition, so physically completely unable to do anything, but is fine mentally, albeit rather low most of the time. I can and do get out, with help from a very good personal assistant for my husband for a few hours a week. Without her I would crack completely.
I would really like to know how others cope when they feel they just cannot go on coping any longer. So, although my situation is not half as bad as Stacey's , nonetheless i get to the point that I am thoroughly fed up with the situation and want to get on with my retirement. I am sure I am not the only carer who feels they are at the end of their tether. So, what do you all do at this point? Liz
Hi Liz,
I care for my brother who has careworkers coming in four times a day. All I do is organize things, but I find it very wearing. I am not really conscious of stress all the time, but I find myself losing things and forgetting things. I don't like taking decisions, but as my brother is very old and has lost his short-term memory and any desire to do things, and is bedridden too, I have to take all the decisions. I also feel insecure constantly interacting with a variety of careworkers and other people. On the whole my situation is very fortunate as I can go out when I want. But am going to have two weeks' respite shortly. In my case that means getting away. I'd rather relax at home, but it's easiest for us to leave my brother at home as there are no relations or other people to help. So I have to go away. I am really looking forward to it! Up to now I've only had one week, and I felt much better after it. I am sure you need a break like that too.
It still leaves the problem that I'm not living the life (of retirement) that I would like to, but I am trying to organize myself so I feel I am doing more what I want and less adapting to the various pressures here.
Hi Liz, Welcome to the forum. That's a feeling we all recognise and share. I'd also like to start my 'retirement'. You are not alone in that. The trouble with 'for better or worse, in sickness and in health' is that if we optimistically expect 'better' and 'health' not the other option. Also, if one has a really painfully broken finger, the fact that someone else has two broken legs doesn't take the pain away. Having delivered those profound and not very helpful observations, what's the answer to your/our problem?
Well, there's no magic wand. There are steps to take. You are both feeling frustrated and 'low' and perhaps reacting to the other's feelings to make things worse? Him feeling bad makes you feel worse and vice versa? So change the mind set. Find something to make things better. Could you and your husband sit down and make a wish list of things that you think would improve the situation, both as individuals and as a couple? Perhaps you could do with more 'time out'. Would he like old friends to visit? I cannot possibly understand your husband's situation except that being trapped in an unresponsive body would be my own worst nightmare, but is there anything he/you would like to do/see/experience/have? If you had a list perhaps you could improve or achieve one thing at a time.
Is there any equipment or technology available that would make life better for you both? Are there any local groups you/he/both could attend? Any lectures or talks he/you/both would be interested in? Sorry if I'm suggesting the impossible but I don't know what your husband is physically capable of or what you have in place already.
Finally, have you got any outside care apart from the personal assistant or are you coping with everything all alone?
I'm not in your situation Liz, and I'm probably spouting all sorts of rubbish from your point of view but I hope I may have helped a little. Elaine
Elaine nd greta, many thanks for your replies. Just been too busy to reply lately, as had a couple of bugs in quick succession , plus other family demands, thanks for your useful suggestions. We have now visited a relatively close by holiday hotel for older peole and p with disabilities and we both plan to both go there in spring to see what it is like as previous visit prior to refurbishment was not good. We want to mkae this work tho and at least it is more on our agenda now, so thanks for your support. Liz