Results 1 to 9 of 9

Thread: Tired

  1. #1
    Forum Member
    Join Date
    Mar 2018
    Posts
    15

    Tired

    Hi ,I'm just having a rant ,my husband was diagnosed in Feb this year with Als and Als related dementia. He had been showing symptoms for 3 to 4 year. He has an enlarged heart,copd,chrohns disease,His bladder stopped working several years ago ,he now has an indwelling catheter. He's just out if hospital with a Uti. He had pneumonia in November,after each illness he seems to deteriorate. As in before the Uti he could get from his chair to the wheelchair on his own,and get out of bed on his own. Now he can't, he needs help with everything. Sorry I'm going On,the rant is I'm tired,he wakes up a lot in the night ,His legs just slide out of the bed and he'll wake me to help him get back in bed and get comfy . I've suggested a cot side but he doesn't want it,he won't use the commode at the bedside. He's rather go to the bathroom. I totally understand this but I'm struggling ,I'm 61 and have mobility problems ,just arthritis in my spine and prolapse discs. I've had both hips replaced . Our children all work though our son lives with us and he does help when he's here. But understandably Steve doesn't want his children to see him in the toilet or with washing. I keep having days if feeling so sorry for myself ,and that's not me. I hate myself for feeling that way ,Steve's only 54 and he hates being dependent,he feels it's his job to look after me . My family live in Scotland and my sister rings every day ,our daughter has just found out she's pregnant so I don't like to put to much on her . The last thing I want is to feel resentful to Steve as I love him so much,but I just feel so alone and tired ,sorry again I know I'm rambling

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,511
    Hi Caljake,

    Please try not to feel guilty and try to get Steve to use things that will make it easier for both of you.

    If a form of cot side works and gives you more rest then it is very selfish of him not to use or try it. You both have to look after each other and make things as easy as possible.

    I don't know if you can put some table type thing with perhaps a cushion on at the same level as the bed so his feet can go on that.

    If a commode would work out better insist on him trying to use it.

    If he brakes you and you can't help him much, what will help then do.

    It is important that he looks after your wellbeing.

    Do you have any carers in and I wonder if he would qualify for CHC?

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,129
    Hi Liz,

    I'm sorry you've so much to deal with - the associated dementia certainly complicates things and his reluctance to use certain things may be FTD related.

    As Terry suggested, I'd be surprised if Steve doesn't qualify for CHC. If he is linked in with a hospice or a palliative care team, they could help with the application. Or phone the MND Connect Helpline for advice. You could do with some outside help...

    I wonder if putting a pillow under his knees in bed would keep his legs more stable?

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  4. #4
    Forum Member
    Join Date
    Mar 2018
    Posts
    15
    Thanks guys ,What's chc ? We have an occupational therapist who rings occasionally to see how we are . We were expecting the district nurse yesterday for Steve's catheter but she didn't turn up,I'm waiting for a call back thanks again for the support

  5. #5
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,129
    CHC is Continuing HealthCare - based on need, not means tested & paid for by the NHS. Steve would get carers provided for x number of hours per day.

    https://www.nhs.uk/conditions/social...ntinuing-care/

    It can be a postcode lottery, but it can help if you get input from his Neuro or hospice social worker etc.

    I'd really advise getting in touch with/being referred to Steve's local hospice - you're kind of being left to your own devices Liz

    Love Ellie.

    PS. does Steve have an MND nurse?
    Last edited by Ellie; 14th May 2018 at 16:23.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  6. #6
    Forum Member
    Join Date
    Sep 2016
    Location
    Cambridge UK
    Posts
    127
    Hi Caljake,
    Sorry to hear you are having a tough time at the moment. I often feel like you. I think to myself 'who am I kidding if I think that I can manage looking after my husband by myself?' You are right about the feeling of lonliness too. I often feel lonely probably because it's me that does everything, all the things we used to do together and I think that's what makes me feel tired.I too have some arthritis which doesn't help the situation as I have to be careful that I don't overdo it.
    Things have eased up a bit since my husband got prescribed some anti depressant. Things are not so intense and I find I have some time for myself.
    Best wishes
    Fru x

  7. #7
    Forum Member
    Join Date
    Mar 2018
    Posts
    15
    Thanks everyone,no he doesn't have a Mnd nurse . The diayruct nurses came out to assess him,they'll be back in June. The ot does ring to see if we need anything. Besides that most if what I know is from thus forum . I know what you mean Fru the Ot said she'd mention to our gp that Steve's mood has been low ,but that was a month ago . He wants to go out but when it comes time he changes his mind ,Besides housework we sit and watch tv all day. I like to read it in the garden but Steve isn't interested. Yes not the man he was and I don't really know how to help him. It's such a horrible disease,he was a laid back look on the bright side guy, I was the worrier,but he's lost interest in everything now

  8. #8
    Forum Member
    Join Date
    Mar 2018
    Posts
    15
    Sorry just noticed all the kids spelling,blooming predictive tx

  9. #9
    Forum Member
    Join Date
    Mar 2018
    Posts
    15
    Miss not kids

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •