Time off!

Just had my two hours, that Marie Curie provide once a week. You know the one I really enjoyed last week! Disastrous this week!!!

Popped in to see my Mum in the home she is in, then went to the supermarket. Thought it would be great to mooch around on my own, but I have forgotten how to! Spent the whole time worried about the time, ended up with 45 minutes to spare. So like all good carers, found a quiet road and sat and balled my eyes out!

I know it was my own fault, I know I should have planned it better, taken a coat and worn better shoes, so I could have gone for a walk. But the constant time watching, where is the relaxation in that.? if I had gone for that walk, I would have only got upset, because S cant do it anymore. How do you get use to this? The learning curve is very steep! This respite is meant to be doing me some good, at the moment, my hips hurt, due to wandering up and down the Mall on Wednesday and now I am totally depressed and feel so lonely, from today's effort. Is it worth it?

Lots of love


26 Replies

  • Poor Heady I feel for you, people are always saying you must make time for yourself but we are not used to having time for ourselves are we especially time between two fixed points . Like you I watch the clock ,worry about being back on time and whether V has been ok . Hopeless aren't we . Can't have all these tears though I think a visit to the doctors is in order - red wine does not always do the trick .

    love Georgepa

  • Sorry GeorgePa, but what's the point of seeing the quack! They are useless. What's he going to say. Get out more! get help in! Take some stupid knock out pill. I'm doing the first two and how can I take something to make me sleep, when I have to be able to hear S trying to move and quickly get up and help him! What I NEED is that precious magic wand to make all this go away and that is not going to happen!

    Thankfully, my son is due to stay with us tonight, so the white wine will be flowing. Know I will regret in the morning, but who cares!!!!

    Lots of love


  • Point taken

  • Oh, Heady, I wish I could give you a hug right now. You probably needed that cry though - let out some of those stress chemicals! I do know how you feel; once a week or so I get to spend my lunch hour from work on my own instead of running home, and when I waste it I feel a bit cheated or, worse, incompetent.

    All this is easier for me because we have only been together 7 years, and he was already beginning to limit his activities then, although it wasn't too obvious. So I have lost so much less than all of you who have a lifetime of love on the line, although I often wish we had met sooner. I am so sorry you are going through this.

    Don't feel lonely. We are here, thinking of you. Love and peace, Easterncedar

  • Thank you, see my new post!

  • Heady i think you have voiced what we all feel when our loved ones are in the care of another. We all want that bit of respite but we are so geared up to being on call 24/7 that we are not sure what to do with our down time. We seem to go to peices because we are more aware of the time ticking away and there is just no way of getting it right. when Brian was attending the hospice i wonderd round like put of me was missing and i spent more time clock watching instead of relaxing so was quite pleased when he stopped going.

    perhaps next time take a book and an alarm clock. Set the alarm so your not late and hide up somewhere and have a read. Have you got an alarm on your mobile perhaps set that and you might be able to relax a bit more. Because you will have the knowledge that you will be notified when your time is up. Easy to say but hard to do i know.

    Big cyber hug to you 💖 Jane xx

  • Thank you, see my new post!

  • Have you any friends you can call now and arrange to meet next week? At first my hours were like yours were today but then I decided time is so precious so I'm going to enjoy my spare time. After the first couple of wasted free time, I invited a friend to coffee at the garden centre and we spent the whole time laughing. I felt so much better when I got home and told C what had been said. I still see friends but also work in the garden without having to come in every few minutes, read in the summer house or even have a nap upstairs if I'm particularly tired.

    Life is hard but my time "off" makes it bearable.

    I hope the next break is better Heady and you get used to time when you don't have to do the caring for a couple of hours. I set my phone alarm now, giving me a warning when I have to head for home so I'm not looking at my watch every 5 minutes but it's always in the back of my mind of course.

    I hope you have a good weekend Heady and I'm sending you a great big hug......hope you can feel it.

    Take care.


  • Thank you, hug received! See my new post

  • hi heady we are down in the dumps arent we mate you said in your mail '' is it worth it'' of courser it is matey everyday you get out of bed its worth it just to get up and have a stretch its worth it

    just to look out the window and see whats going on all around you its worth it mate to take a deep breath of morning air its worth it you are a strong woman matey you will get over this upset you have had for sure and think what the hell was it all about and you are not alone you have all of us I no its no consolation but its 2nd best thing that we can offer to you so matey wipe those tears away lets get going again and if you want to you can say ITS ALRIGHT FOR YOU because that is a natural thing to say and I will forgive you for saying it mate so come on matey best foot forward your old mate peter jones queensand Australia psp sufferer

  • Thank you, don't worry, I meant is it worth having carers in! See my new post

  • Heady I do not know how you cope with only two hours. I now have my 7 hours twice a week and it does make a difference, even though I have yet to do anything truly relaxing. Have spent the time catching up on my academic work and doing domestic tasks but it is just so nice not to be listening for C's call, or the crash when he falls/knocks something over. And the satisfaction from actually getting stuff done without interruptions is also good for me. I think two hours is too short unless you really get organized - and who has the energy for intensive organization? However, setting an alarm will help I am sure and you'll get used to your snatched time off. As we all seem to get used to everything about this horrendous condition. Must go and get C up for another day of plodding on.

  • Thank you. I do get 7 hours at the moment, when S goes to the hospice. See my new post

  • Hi Heady, I know how you feel. You feel lost when you get time to yourself. Please try and arrange to meet a friend or plan something before next week. When you are so tired and anxious it is very hard to relax. Try and make the most of your precious time out. Thinking of you. xxx

  • Thank you, see my new post

  • hi heADY

    I AGREE IWHT WHAT HAS BEEN said= ab`ov e

    do try and arrange something for next week ~meeting a friend is a good idea- just to give u some me -time\

    lol JILL


    PS I FELL LAst night out of bed nD NOW I Have pins and needles in my left hand/ NUMBNESS=- makes the typing even HÅRDER!!

  • Thank you, hope your arm is feeling better now. See my new post

  • hi heady

    i have just made PSORT NEEDING ADVICE ON What todo BOUT THE hand\

    it is no better and i am seeing a physic friend todayor tomorrow zaznf will get some tips fm him

    lol jill


  • Hi Heady.

    Sorry to hear about your 'wasted' time off. I agree with all the advice given. It's hard to cope with sudden time off. The first time we had a sitter for three hours, I was so exited to finally have some me time, when it came to it I did not know what to do with the time. It's again another adjustment to make, remember you had a lot of upheavel in the last weeks. I'm sure you will start to enjoy your time off very soon. Good luck, lots of hugs, Maddy

  • Thank you, see my new post

  • Hi Heady, I get the same time off as you 2-3 hrs a week from Carers Trust, I have had them about 18 months and have now developed a routine, walk around park along river depending on weather for an hour then go to local coffee shop for coffee, Danish and people watch. Explained to owner once what my problem was (I must have looked shattered), now when I go in they let me be or chat depending how I feel but best of all they remind me of the time when I need to leave no more worry about being too early or late. Sounds boring but it has become another routine along with all the other ones needed for caring for M. GP may help as one thing you do not want to get into is depression cycle. The occaisional happy pill may be useful but I said no and tried a Bach remedy from Boots, works for me when I feel down and do not want to open another bottle of Red.

  • Thank you, see my new post

  • Hi Heady...no words can describe what you are up against,I am sure you need more time off...it will help ,I know no other situation that requires the effort this illness places on a caregiver,if I was closer I would help you,Rollie

  • Thank you Rollie, just knowing you are all out there, is a huge comfort! See my new post

  • Sure wish you were closer I would put you in the hot tub with a glass of wine and would not let anything but pure pleasure take you away just relaxing and enjoying a moment.

    hang in there i know its hard just hang in.

  • Thank you, see my new post

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