1. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    Since Philip was admitted to the continuing care ward in December I have felt overwhelming tiredness. Is this common? Also I seem to run around in circles and can't concentrate on any one thing for more than ten minutes. I used to love reading, but can't manage to be interested. Has anyone else experienced this after "losing" their partner to hospital or care home? Will it pass and will I be normal again?
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I found the process of 24 hour caring for Jan [with no help] one that totally drained me, physically and mentally, but something - thank goodness - kept me going, looking after her.

    The body can only take so much, however, and after a prolonged period of exhaustion, all sorts of things happen as one recovers. Firstly, the body shuts down and you sleep. The mind shuts down from time to time, and you mentally freewheel. Concentration goes - I have never regained my ability to get lost in a good book for a reasonable period of time: generally 15-20 minutes is the maximum I can read for.

    I found the best way to keep focused was to buy DVDs and watch them right through in the long evenings when Jan had gone into the home. It took me away from my world and it was less demanding on me than reading. At the moment I really don't have time for reading anyway, what with working and visiting Jan daily, but I do hope at some time to re-kindle my own love of reading.

    I believe we can return to normal, but just what we define normal as may have changed a bit.
     
  3. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    I felt very tired after my husband went into a care ward before Christmas. This is improving a bit, but my sleep pattern is still very erratic, as though I am still listening for my husband - the slightest noise wakes me.

    My concentration is also shot. I too loved reading, but can't do it for more than 10 or 15 minutes at a time now. I find I can only do most things for a short while then have to wander off and have a break - even have trouble watching television. The only thing I seem to be able to concentrate on right now is this forum, hence my frequent postings in the last couple of weeks!

    I did go to a local film club at the invitation of a friend last week and managed to sit through a good film. First film I've been to in over two years, so I may try that again, as I can't get up and wander around in the cinema.

    I don't know what normal is any more, but I'm sure it won't be anything like it used to be if I ever get back to it.
     
  4. Joy

    Joy Registered User

    Jan 18, 2004
    7
    Mid Wales
    tiredness

    When Ian went into hospital I found it very difficult to concentrate and motivation had left me completely. I was off work for sometime and even now feel that some days I can't face getting up. I must say though that I am beginning to plan for the future. Some days are still bad but I do have days when I can feel positive. I do find though that I stay up very late now (I was usually in bed about 9.00pm) and I have a routine of getting in from work studying until 9pm and then watching whatever rubbish I can find on TV until about midnight. I have started knitting again and I find it very therapeutic. I aslo fit work etc around visits to the hospital and will be glad when Ian is closer to home so I can visit more frequently. I sometimes feel if I did not have this structure to my life I would sit down and give up. I think we go through various processes as we are grieving for our partners and what should have been. it affects us in different ways but it does impact on our well being.Take care all of you.Joy
     
  5. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    Thanks all of you. It's nice to know I'm not completely abnormal in my reactions. As you say, this forum is about the only thing I concentrate on - obviously the situation is so overwhelming it is difficult to let other things into your mind. Was interested to see that sleep and going to bed is difficult. I, too, am up till past midnight - perhaps being so tired dulls the pain. Anyway, thanks for thinking about me which is a great support. Best wishes to you all. Jane
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I found that by getting really engrossed in something I could override my tiredness.

    Doesn't have to be anything particularly challenging.

    I set myself the task of putting as many photographs from our 35+ years onto the PC; this satisfied my interests in computing and photography with Jan linked into that through her photographs. Guess it served as a form of grieving.

    As a relaxation I became a Stargate freak - this linked my joint interests of science fiction and Egyptology. Spent a fortune on DVDs, so retail therapy seems to wok too, but only if well focused; one never has enough to throw it away.

    Just realised that what worked for me was things in combination. Perhaps doing one thing on its own doesn't work so well.
     
  7. C.Waring

    C.Waring Registered User

    Feb 6, 2004
    21
    Lancashire(East)
    Interesting to read everyones thoughts on concentration. I find that my ability to focus and concentrate has gone. I seem to be different in that I still have Jim at home with me and I am still trying to teach full time and hold all the finances house and everything together. I feel as if I have so many things tugging me in all directions that my mind is like a butterfly. This has cost me 2 speeding tickets on the dratted 30 mph cameras, one when I was going to pick Jim up from the day centre and one when I was late getting away to get to work, I find my mind wanders terribly when I'm driving -dangerous I know but I find it so hard. I have been a poor sleeper all my life but now by the time I've survived another day I'm so exhausted I sleep.
    I also seem different in that Jim does not wander out at all, quite the opposite, I really struggle to get him out of the house for anything at all. We have been keen fell walkers all our married life but now I can't get him out at all. He just sleeps in the chair in the evenings, in the good days he was a fantastic pianist and would play for hours in an evening while I did jobs or enjoyed my hobby of embroidery but those days are gone too. this dreadful AD robs one of everything!
    The only thing I concentrate on now is improving my computer skills to join this site each evening, it passes the long quite eveenings and is rapidly decoming a comfort to me.
    Bye for now Carole
     
  8. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    Hi Carole - I could have written a copy of your message a few months ago. I gave up teaching two years ago when it became impossible to leave Phil. When Phil was at home I too felt pulled in so many directions - house maintenance, finances, trying to maintain friendships, keeping Phil interested in life. It is so sad to see them just sitting isn't it. Especially when they've been active and talented. I, too got a speeding ticket driving up to our daughter's in Manchester. I'd felt so pleased with myself for doing the whole journey with Phil asleep in the car and no embarrassing stops at the Service Station (having to take Phil to the loo). It was a relief when he had to be taken into the care ward (he suddenly became aggressive) but I'm sorry to say the relief was short-lived and I'm still having to put all his needs first and battle for better conditions etc. I suppose all we can do is carry on as best we can hoping for better times.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Thirteen years into Jan's illness, it still goes on, that need to battle.

    Right from the start I have had to fight for her interests[I diagnosed her 5 years before the medical fraternity but they called me daft when I first told them what I believed was the problem] up until - well, as far as I can see into the future.

    I battled for her as we explored alternative reasons for her symptoms. We went the route: GP, heart specialist, brain specialist, psychiatrist, psychologist, etc. Most was privately funded as I had cover for Jan on my work healthcare, but the only one I felt was not just going through the motions [and running with the money] was NHS - St George's in London [they at least were superbly thorough and finally told me it could NOT be what they were testing for]. As soon as there was a hint of what it might be, the private healthcare dropped us. Until the diagnosis was 100% I fought to continue private tests.

    I pushed for MRI, cat, and a host of other scans, ECGs, EEGs, ambulatory heart monitors, all three of the main Alzheimer's medications Ebixa, Aricept, Reminyl. I fought to get day care [they threw us out], help looking after her at home [never cracked that one], Disability Living Allowance [got it for a short while].

    On assessment I ensured I was there every day to support her [this was almost the most difficult time of all for her as it was the first time that a seemingly mostly ok young woman was suddenly pushed into the company of a group of much older, fairly disturbed people - while I 'just left her there' [her words]]

    When it was taken out of my hands and she had to go into full time care, she was moved to what has turned out to be a wonderful home - but the assessment centre didn't tell the home of her needs, then immediately filled her place so she couldn't be returned to them. I had to explain to the home that Jan couldn't share a room or sleep in a bed and needed 1-1 care [none of which the home had been told]. They sorted it immediately, but with looks of horror. I continue to visit on a daily basis 30 months later to ensure that she gets the company she deserves. Only recently did I stop doing all her washing at home. Now at least I have help in fighting her cause - the home is fantastic in that, but we both have to fight bureaucracy and budgets to cope with Jan's needs.

    I wouldn't have done any differently, but as I look back, I really don't know where I found the ability or energy. I'm so glad I did!

    The only plus point of being with an Early Onset patient is that I myself am relatively young and have been angry enough [about the condition, about some doctors, about the loss of our life together, about the slowness of diagnosis, about the feeling of total futility, about the inevitable outcome, about so many other things] to pull out all the stops to do my best for my wife.

    I can't imagine what it would have been like to be twenty years older and to have all that, but also to be unable to do so many things to help. Or not to be able to visit her every day. Or....etc

    We're not out of it yet of course, and I have no idea how long it will go on, but I will keep on battling for her.

    For those who are at an earlier stage in the process, I can only say that it is so worth while, even though the depression and weariness will set in at times. Besides helping the most important person, you will also grow immensely yourself. It does stop getting worse, at a certain point, though that's not to say it will get better. Close intervention WILL ensure that your loved one will get a better time and treatment.

    I won a small battle against the results of the disease yesterday and for the first time in many months, felt a weight drop from my shoulders. You can win small battles even if the outcome of the war is inevitable. A small battle for you can be a major one for the patient.

    By the way, one thing I have found is that people now treat me differently. Perhaps it is because I have changed through the experience, perhaps they think 'but for the grace...'.

    Good luck to everyone.

    P.S. always managed to miss that speeding ticket, though it must have been sheer luck...
     

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