It's life Jim - but not as we know it!

Discussion in 'I have a partner with dementia' started by jenniferjean, Sep 18, 2019.

  1. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    503
    Female
    Basingstoke, Hampshire
    I've intended for some time to start a thread of my own and update it from time to time which would serve as a journal of our journey with dementia. Back in August I posted about my husband always finishing his sentences with "Jim". He still does it and I'm still not sure if he's calling himself Jim or he's talking to someone else. When I posted about that @Bunpoots came up with "It's life Jim - but not as we know it!" and said how that pretty much sums up living with dementia. So I thought that would be a good title for my thread.

    For some time I've been aware of a few people posting on TP about having a bit of time on their own when their LO goes to bed, and I thought "why can't I do that". Usually at a certain time in the evening my husband will turn off the TV and hint that it's time for bed. I'm usually pretty tired by then and stop whatever I'm doing and hit the sack. But occasionally I'll want to carry on with what I'm doing, usually it's something I'm trying to read. I'll suggest he goes to bed but he always says he'll wait for me, so I stop whatever I'm doing.

    But last night I decided that I would finish what I was reading and he would go to bed on his own. I've pretty much had to stop reading books as I don't get to concentrate enough, but this was an article that I really wanted to read. So I firmly told him that no he wasn't going to wait for me and that he was going to bed by himself. What a joke!. It was just like a child - "I need the toilet", "I want a drink". It went on for almost an hour by which time I was too tired and worn out to read.

    I've tried going to bed early in the hope of having a bit of me time in the morning, but no as soon as I'm up so is he. I do enjoy crafting which is something I can do without the constant questions and demands interfering. But reading is something I haven't been able to do for some time. I just thought I'd start my thread with a bit of a moan.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,700
    Kent
    I didn`t read one book while my husband was living with me with dementia @jenniferjean.

    When he went into residential care, I bought myself a Kindle and often sat at the seaside allowing myself the peace and freedom I hadn`t had for years.

    It`s good to start your own Thread and chart living with dementia. It`s somewhere to come which is yours alone but invites others in.

    It`s a virtual social life when we are unable to have the real thing.
     
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,150
    Nottinghamshire
    Great title @jenniferjean :D.

    I wonder if you'd get away with earphones and listening to an audio book in bed?
     
  4. Joyt

    Joyt Registered User

    Jun 30, 2018
    34
    Me too. I didn’t read a book for the three years of living with the worst of dementia. Even now, a year on, I struggle with novels.
     
  5. Joyt

    Joyt Registered User

    Jun 30, 2018
    34
    I plugged myself into a lot of podcasts.....
     
  6. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    101
    Hi jeniferjean, I moved into the front bedroom a couple of years ago to get some me time, and it was great and worked fine for about 18 months, I could watch what I wanted on the telly, read or just relax and listen to music, (ahhh bliss!)or now to come on here, I knew he was awake but at least he was quiet. But then a couple of months ago he started going worse in the evening about 9 o’clock, constant questions and confusion, so my so called sanctuary is becoming less and less because by the time he’s finally settled, I’m knackered and just want to go to sleep! You can’t win!:rolleyes: x
     
  7. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    198
    Male
    South Northwest
    Sometimes folk here mention something and you think: "Ah, not just me then!"

    In the four years or so since I became my mother's guardian in one form or another I've read a few pages, attempting to find the satisfaction I used to find in fiction, but nothing ever sticks. I just can't let go of this reality for long enough to settle into an alternate reality.

    I do listen to a lot of podcasts now though. I can have one earpiece in while getting on with other things... I guess it's a more passive form of distraction than reading, and that's all I have the mental energy for, for the time being. I've thought about audiobooks, but they're out of my pocket money range really. I suppose I could buy an audio version of War and Peace and listen to that for the next decade. Who knows, it might even help me get to sleep!

    Not that getting to sleep is my problem. My problem's being allowed to stay asleep!

    Anyway, yes, reading... I make do with reading the ingredients on the food I shouldn't be comforting myself with now. When this episode of my life is over I'll have to walk so much weight off that I won't have time to read then either! :)
     
  8. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,249
    Female
    Chester
    Butting in but I understand if you search there are free or cheap audio books, although it might be in the young adult (known in my day as older teen) genre as that is where my info comes from. And you don't need the angst and life searching that that age group buries themselves in which is within that genre in your life (dau reads them, look way too miserable for me).

    @jenniferjean - I will follow your thread, although I don't feel I can provide much comment on a spouse dealing with their partner's dementia.

    The phrase 'it's life Jim but not as we know it' was one of the catch phrases of a uni surf trip to Devon in 1989 - there was a star trek film out them and the song (which I think charted) was a feature of the trip - Klingons on the starboard bound being another phrase.

    I hope you can find a way to get some time to yourself. crafting sounds nice, not had time for that since pre children (I know my choice and not a dementia issue).
     
  9. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    503
    Female
    Basingstoke, Hampshire
    I think you've hit the nail on the head there.
     
  10. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    503
    Female
    Basingstoke, Hampshire
    This might sound strange but I actually felt a bit better when I read that. I'm sure the feeling of "not just me then" does make it a bit more acceptable. I'm just going to have to go along with it and let it be.
     
  11. ITBookworm

    ITBookworm Registered User

    Oct 26, 2011
    452
    Glasgow
    I know this won't apply to all areas but my local library has an "app" (BorrowBox in my case) where I log in with my library card details and I can download eBooks and eAudiobooks entirely free. It works like a physical library in that you "loan" books and can "reserve" it if someone else has it out and it vanishes off your device at the end of the loan period unless you extend it.

    I have the app on my phone but I assume it would work on a tablet just as well. If you can't get in to a library it is at least another option. :)
     
  12. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    503
    Female
    Basingstoke, Hampshire
    We've just been out for a lunchtime meal. There were thirteen of us from the flats and we went in four cars. We went to a local garden center and had a table reserved and we had table service. The food was good and my husband ate well. The only problem my husband has sometimes when he's eating is his nose runs, and he doesn't seem to notice. I had thought about not going for that reason, but I hoped it wouldn't happen. But it did. When I notice I tell him and he uses his hanky, but I don't always notice in time. At one point the lady opposite handed him a serviette. He doesn't seem to be embarrassed by it but I am.
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,463
    I too, a keen reader, cannot read a full book. I dip in. I read short articles, newsletters by email.
    The radio is good to keep me in touch.
    I feel I just have sunk into the situation, it saves stress of trying to fit in the impossible!
    I was in two book clubs!
    I am not being defeatist, just at other periods of my life some things had to be dropped or adapted.
    How I managed a month ago is different from today. A trip to toilet took so long, a few weeks ago he could manage with a few prompts!
    It is sad, but a comfort that others find the same! Sorry folk!
     
  14. nitram

    nitram Registered User

    Apr 6, 2011
    19,091
    Male
    North Manchester
    This was explained to me (in noddy terms) as the brain being confused between saliva and a runny nose.
     
  15. pevensey

    pevensey Registered User

    Feb 14, 2012
    194
    Female
    South East Coast.
    Oh gosh that happens to my hubby when hes eating, his nose just drips sometimes,, and he sneezes a lot when hes eating, didnt realise that it was part of the dementia.
     
  16. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    198
    Male
    South Northwest
    Thanks for the reminder. It's always worth keeping up to date with what's available and it's been a while since I had a hunt round. I know in the past I found the readers of a lot of the free ones weren't particularly engaging. It doesn't help that I can be a bit fussy about what I read, which isn't a problem when you've got access to the normal text range.

    Interesting. There seems to be something similar around here. The range seems very limited, but beggars shouldn't be choosers. :) It's an opportunity to expand my reading range,

    Thanks
     
  17. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    252
    If your library uses Borrowbox, then it certainly is not a limited range! There are thousands of books and audiobooks to choose from, all free. I rarely go to the library anymore unless I need to reserve a book for my book club which is not available on Borrowbox.
     
  18. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    198
    Male
    South Northwest
    Cheshire East appear to use something called RBdigital. Maybe I'm searching wrong but it seems pretty limited.
     
  19. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    252
    Ah yes, Cheshire East do not use Borrowbox and their digital library is poor. I live in Stockport, a neighbouring county and luckily get a much better library service! Friends from Poynton often moan about the difference.
     
  20. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    337
    Female
    Does your OH fall asleep (and stay asleep) as soon as his head hits the pillow? If so, could you have an early night and then get up for some 'me time' as soon as he's in the land of nod.
     

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