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Posted: Thu Aug 28, 2008 1:13 pm
Hi Everyone, well again I haven't been in touch for a while because my computer gave up and I've had to buy a new one, but I haven't any information as I lost all my addresses.
I haven't started a topic for a long time, but this has to come out in the open or I'll just go mad.
I am totally and utterly lonely, my days are so full but I haven't any time for myself, briefly I care for my husband with P/D and Dementia, and also my son who's forty with A/S and learning disabilities.
There are people constantly coming in and out of my home who help me with both problems, but I have no one at all who I can talk to personally.I haven't got a life at all, I rescently had an operation and my husband had to go into a home till I got well again, and that it where we are now, I have to start again next week and I can't face it, I could decide to let him stay in the home, but he wouldn't last six months and I couldn't live with that, plus my sister in law says I have a duty to care for him, well I have done for eight years, I have never ever had respite from my son, as he won't go anywhere, which leaves me where I started, not having any personal life at all, it would be lovely to have someone just put their arms round me and give me a cuddle. I joined a friendship agency saying I only wanted friendship, but unless you can have days off or weekends away(after being married for 44 years I wouldn't know what to do even if I had the inclination) so that hasn't worked out, anyway it made me feel like a loose woman, I'm sixty four, why does young men want with a sixty four year old, I've had them as young as 31, I've food in my freezer older than that! So can anyone tell me how to go on from here please,I will have my husband home without a doubt, but it still leaves me having no one to talk to or share my hopes and dreams with.
You'll probably think it's a pity I haven't anything more to worry about, but I feel so lonely. Thanks for listening Mary
How does any of you manage?
Aw (((mary))), things sure are
Posted: Thu Aug 28, 2008 1:35 pm
Aw (((mary))), things sure are a struggle for us Carers aren't they!
I think, from time, to time, if we are honest, we have all felt a bit like you do just now.
Have you a Carer Centre near you? they usually have a worker who can come out and visit for a chat if you can't get to them.
Some centres run support groups where you can go for a chat and a cuppa or they can put you in touch with another Carer in your area who can come to you if you prefer!
For some respite, have you got a Direct Payment going?
Don't struggle on alone- I did for years and it's much better now as the DP let's me get some me time!
I know you say your son won't go anywhere but would he accept someone coming in to take over to let you get away for a bit?
Get your Carer Assessment done or even re-assessed as your circumstances have changed a bit since you have had some health issues yourself!
Maybe Social services will up the support for you as a Carer
and try to meet some of your needs to get out and meet a carer group or visit the Carer Centre & have some time away?
Come and chat here!
Someone is always going through similar hard times or just come out the other side and will offer you a ((hug)) and a friendly word.
Loneliness is a terrible thing,
Posted: Thu Aug 28, 2008 3:22 pm
Loneliness is a terrible thing, even more so when you are in the midst of a lot of people.
Marie is right, you need to get some 'me' time, but until you get an assessment sorted, could your sister in law not give a little of her time to give you a break?
One may have a 'duty of care', but not to the point of totally subjucating someone else's whole life.
((((( big hug)))))
Do you have
Posted: Thu Aug 28, 2008 3:38 pm
((((( big hug)))))
Do you have any siblings to talk to?I know it sounds silly,but a brother or sister can take you back to the little girl you used to be.My sister helps me so much when I feel as low as this, and we can end up giggling about the silliest things you could ever think of, things that only siblings can share.My caring role has a fullstop at the end of the day,if my sister stays with us, as we sit with our memories until we are crying with laughing. I don't get any sleep, but who needs sleep anyway?!When my late mother was terminally ill, she used to tell me that her two sisters helped in different ways; one cried with her, the other made her laugh!
Good luck, and another (((((hug)))))
Thank you for trying to
Posted: Thu Aug 28, 2008 6:02 pm
Thank you for trying to help,I have just had 5 weeks free from caring as I've had an operation, and I do get respite, but I've always got my son who hasn't a clue about my being lonely, but I have no one at all to try to explain about how lonely I feel,although my husband is sat in the same room, more often than not he's asleep,or if he isn',t he struggles to speak so there's no conversation as such, I sit hour after hour just sitting there with no one to speak to just watching over him to make sure he's OK, I don't watch TV very much as quite often my son has repetative "Only fools and horses " on and it's on so much he can quote any sentance from any program or any series.
I know none of us choose this life, but this is no life for anyone, I always imagined that when we retired, all out hard work was over and perhaps we could have a bit of pleasure, but this is not to be.
I read your post
Posted: Sat Aug 30, 2008 5:09 pm
I read your post and it made me feel sad for you, just remember what you are doing is important, you are maintaing the health and wellbeing of your loved ones and saving lives, nobody could do that better than you, even if they were paid to do it - however you need your own interests too and time to reflect and be more refreshed, that makes you a better Carer.
I am posting you some links here that might be of help
http://www.spiritofwomen.com/whentheyre ... _ways.html
http://health.yahoo.com/other-other/car ... cares.html
The favourite bit of advice from the article is this]http://bestsmileys.com/hugging/6.gif
I think you are
Posted: Sat Aug 30, 2008 10:51 pm
I think you are doing an absolutely brilliant job looking after two people who so obviously depend on you so much. It nearly drove me bonkers being a full time carer for just one (my Dad), and I found that the only thing that prevented me from going totally doo-lally was having three hours out of the house on a Wednesday afternoon when a lady from Crossroads for Carers came in to sit with Dad. We were referred to Crossroads by hospital social services when Dad was being discharged from hospital and I made it clear that I was going to struggle if I didn't get at least some free time on a regular basis. I don't know if you have any such service in your area, but you definitely need to sort out some "me time" for yourself as a priority. Do it now, and all three of you will benefit in the long run.
I think Dee has
Posted: Sun Aug 31, 2008 9:58 am
I think Dee has said it all. I would not be here today if it was not for "Crossroads" and the lifeline they offered when I was caring for three and relying on local shop delivering groceries and the butcher with the weekly meat order.
We had two hours twice a week and the Monday one was spent doing other shopping and bill paying (before I persuaded dad to use direct debits). Hubby used the time to do gardening when he was able, but the Friday session hubby and I went out together, drove to a lay-by on the outskirts of town and relaxed together, the only time we had together for two years. If it wasn`t for crossroads we wouldn`t even have had that.
After mum died we were re-assessed and by that time it was obvious my hubby had cancer and the prognosis was not good. Crossroads continued to visit my dad to give me free time and when we were hundreds of miles away with hubby undergoing five operations dad was ill first in hospital, then respite, but during that time Crossroads attended to his laundry and library run and shopping he needed so I wouldn`t worry so much about him being neglected.
Take all the help you can get, but you will have to hunt it out.
Being a carer can
Posted: Sun Aug 31, 2008 10:46 am
Being a carer can certainly be a lonely time.
Age Concern offer a befriending service and councelling.
Plus some of the carer forums have chatrooms too, which can be good fun as well as sharing and talking about problems.
PRTC has one you can find it Carers.org, as well as just everyday chat, they hold hosted chats and quizzes.
The Lonleyness of the longterm carer.
Posted: Thu Sep 04, 2008 2:30 pm
I can only comisserate with your problem, my wife has muscular dystrophy and her care needs are increasing all the time, I provide care overnight, in the mornings and at the weekends I am fortunate that we have paid carers coming in at various points during the day which allows me to work. My jobs used to be fairly high pressure running IT departments etc, but we decided we needed to change which meant moving and being able to payoff the mortgage as part of the change I took on a far less demanding role in IT. This has had the unfortunate consequence that I realise now that I was just covering up the lonlieness by being busy. Its not what chaps want to do but sometimes I would just like to sit in a room and cry and talk to somebody who would be able to be nonejudgemental about it and not start trying to establish action plans etc. My family have always been fairley distant emotionally and I am perhaps hindered by that, my wifes family is not an option. Why have I typed this I don't know other than to add my voice to the others who have already said it affects us all.
Best of luck