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End of life husband - update

Discussion in 'Personal' started by Marshall, Aug 17, 2019.

  1. Marshall

    Marshall Star commenter

    It's been a while since I posted about this.

    Since I retired and hubs is getting constant care and food and drink he is much improved. However he still hasn't been out anywhere (except the garden) since November and his motability car has been returned - a very big decision for him to make.

    He still sleeps 18 hours a day and I have noticed recently a decline in his memory which he is adamant isn't happening. It got much worse before he was admitted to hospital for blood transfusions and I will ask the doc for another blood test to check on this again.

    He is reluctant to do things and he has panic attacks.

    Hospital bed is still in place and district nurse continues to visit once a week plus doctor once a month.

    If I didn't feed him, remind him to take his tablets, make his food (he does make his own cup of tea!), monitor his everyday needs he wouldn't be here. I think that is why he went downhill so fast when I went back to work after my shoulder disaster.

    It's hard and I do get frustrated - especially when he says 'I'll empty the dishwasher' and he takes 10 steps and then has to sit down.

    So, he'll be here a little while longer I think but he has good days and bad days and really bad days when he doesn't get out of bed at all.

    He doesn't get dressed very often now - it tires him out and I struggle to make him have a shower and shave. The shower panics him.

    Thanks for reading.
  2. primarycat

    primarycat Star commenter

    Thoughts are with you. It's a horrible situation for you both.
  3. Aquamarina1234

    Aquamarina1234 Star commenter

    Thanks for the update. I cant think of anything inspiring to add but you know your input is valuable.
  4. grumpydogwoman

    grumpydogwoman Star commenter

    And what about YOU?

    I know you're posting plenty on here and we need you and you sound full of beans but you are getting out a bit?
    ROSIEGIRL, chelsea2, Ezzie and 6 others like this.
  5. BertieBassett2

    BertieBassett2 Star commenter

    Nothing I can say really, but didn't want to read and run. Stay strong. Hugs, paws and purrs.
  6. Marshall

    Marshall Star commenter

    GDW - not as much as I should (getting out) but I am now getting into more of a routine and I am starting to plan things to do.

    I don't (and never had) many friends who I can meet with. That's not a bad thing - I have always happy with that.
  7. Lara mfl 05

    Lara mfl 05 Star commenter

    Very valid point from gdw there, having done long-term care for many years, I must stress how important it is that you don't subserviate all your own needs just to be there for your husband. Care does take it's toll and being at home with little company can easily erode your self-confidence, which is not good in itself, but will also not help when eventually after all this is over will not help you feel able to tackle re-entry into the world of work.
    YOU are important too.
    Ezzie, bombaysapphire, bonxie and 5 others like this.
  8. mothorchid

    mothorchid Star commenter

    Glad to hear it's currently going OK, @Marshall. Thanks for the update.
    Do take care of yourself too. Long term, (I hope this doesn't come over as callous, it's not meant to be) you will need some sort of life afterwards.
    chelsea2, bonxie, Lara mfl 05 and 3 others like this.
  9. emerald52

    emerald52 Star commenter

    Thinking of you both. Take care.
    JosieWhitehead and Lara mfl 05 like this.
  10. grumpydogwoman

    grumpydogwoman Star commenter

    I'm not a "friends" kinda person but there's a bit of retail therapy or a nice coffee shop? Change of scene.
    Lara mfl 05 likes this.
  11. HelenREMfan

    HelenREMfan Star commenter

    It is important that you do things for you. Out for a nice coffee... or mooch around a charity shop (goodness I had a friend who could find the most amazing designer bargains....)
    What you are doing is draining. Draining because of the physical non-stop work and even more so mentally draining and sadly spoiling probably a lot of good memories of your husband etc. I do hope there is someone close by who you can call on for a bit of "normal" company - wonder even whether there are any Tessers reasonably close to you who could meet up with you not too far away ? I alas am in the north west and know that is prob no use at all.
    @nomad is looking to arrange a Cambridge meet up in Oct half term..... might that be anywhere close to you for something to look forward to? TES meets are exactly what you wish them to be and all the ones I have been to have been fun....something to look forward to....
    Wish I could be of more help.... I trust that you would give a shout-out here if there is anything more concrete folk could do.
    Thinking of you.
    Laphroig, emerald52, bonxie and 3 others like this.
  12. jubilee

    jubilee Star commenter

    Why have you returned what is a subsidised motability car? You can be the designated driver of the car as happens when a blind person has a motability car.
    check if it's better to rejoin the scheme and to get rid of your car.
  13. jubilee

    jubilee Star commenter

    Have you had Occupational therapist out to assess your home? They should be able to make adaptations to shower, with a fixed seat if he fears falling in the shower.
    Lara mfl 05 and Marshall like this.
  14. Marshall

    Marshall Star commenter

    I have my own (new) car and the return of the motability car will give us the full higher level monthly disability allowance in money into our bank account. You have to pay for the motability car through loss of your allowance and seeing as it wasn't being driven and as I have my own car it made sense.
  15. Marshall

    Marshall Star commenter

    Had a new walk-in shower fitted and we have a seat. It's the fact that it makes him breathless and cold. It's the old thing - he'd do it for someone else but not for me.

    Son in law coming tomorrow and that's his mission!
    emerald52, Lara mfl 05 and sabrinakat like this.
  16. smurphy6

    smurphy6 Senior commenter

    Bless you and your hubby Marshal. It’s a hard road you are both travelling but your resilience is a testament to the love you have for your hubby. He is lucky to have you. Take care of yourself as well as him. Best wishes to you both from me.
    emerald52, Lara mfl 05 and sabrinakat like this.
  17. friedgreentomatoes

    friedgreentomatoes Star commenter

    Thank you for updating us. My thoughts are with you.
    Lara mfl 05 and Marshall like this.
  18. Marshall

    Marshall Star commenter

    Lara - your point about self confidence is very appropriate and thanks for reminding me!

    I have a plan for September - just taking the time to get used to it all (enforced retirement, being a carer, nothing to extend my brain, etc).

    I have good days and bad days. This has been made worse recently because I have had a major flare up of my ulcerative colitis - steroids to the rescue and I am now much better.
    emerald52 and Lara mfl 05 like this.
  19. Sundaytrekker

    Sundaytrekker Star commenter

    I can’t add any more to the advice here just to add my thoughts and best wishes. Yes, if you’re near enough to get to the Cambridge Meet it would be great to see you. Do try to get out of the house for an hour or two when you can. I’m pleased hubby is a bit improved.

    Keep posting!
    Lara mfl 05 likes this.
  20. grumpydogwoman

    grumpydogwoman Star commenter

    Ugh. I'm struggling with diverticulitis at present. My sympathies.

    Voluntary work!
    • League of Friends? Local hospital? Couple of hours in the coffee shop?
    • Food Bank?
    • Appropriate adult on-call for the police station?
    Doesn't have to take a lot of time.
    Sundaytrekker and Lara mfl 05 like this.

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