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daylily
daylily Member Posts: 619
edited 27. Oct 2010, 08:14 in Living with Arthritis archive
Hi. Just had terrible day with hubby (severely disabled by a stroke-mentally and physically). He wanted to go to a car boot again today, we went yesterday, trouble is after yesterday I am in a lot of pain with arthur as he is 18 stone and I have to push him in his wheelchair.
With the best will in the world I cannot do 2 days on the trot :!:
My feet, ankles, right knee, left hip, spine, neck and shoulders all take a battering when we go out with the wheelchair.
Took some pills this morning and went back to bed after he'd had his breakfast but I feel so guilty as he doesn't have many pleasures in life and he's spent the day sulking (he can be very childlike).
I just don't know what to do for the best. :?
Any help would be appreciated
Thanks.
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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh daylily, how difficult. Does he understand how ill you are? Can he comprehend your pain and mobility problems? Does he realise how lucky he is to have you there? I feel for you both, but he was out yesterday at great cost to you: don't beat yourself up, you are doing your best for him, that is all you can do. You have to support yourself, as well as him. It is all one-way traffic - that is the fundamental unfairness here. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
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    Hi Daylily

    Don't beat yourself about not taking his to the car boot today. By the sounds of things you need to rest. Can the stroke society help you? There are organisations out there who may be able to give you some time off.

    Having arthur is very exhuasting and if you're not well then it'll be even harder on him. Try and get some help.

    Tel: 0303 3033 100 for the Stroke Association. Or check online www.stroke.org. They may be able to help you.

    Kind regards
    Sharmaine
    daylily wrote:
    Hi. Just had terrible day with hubby (severely disabled by a stroke-mentally and physically). He wanted to go to a car boot again today, we went yesterday, trouble is after yesterday I am in a lot of pain with arthur as he is 18 stone and I have to push him in his wheelchair.
    With the best will in the world I cannot do 2 days on the trot :!:
    My feet, ankles, right knee, left hip, spine, neck and shoulders all take a battering when we go out with the wheelchair.
    Took some pills this morning and went back to bed after he'd had his breakfast but I feel so guilty as he doesn't have many pleasures in life and he's spent the day sulking (he can be very childlike).
    I just don't know what to do for the best. :?
    Any help would be appreciated
    Thanks.
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    Oh daylily, how difficult. Does he understand how ill you are? Can he comprehend your pain and mobility problems? Does he realise how lucky he is to have you there? I feel for you both, but he was out yesterday at great cost to you: don't beat yourself up, you are doing your best for him, that is all you can do. You have to support yourself, as well as him. It is all one-way traffic - that is the fundamental unfairness here. DD
    Hi DD
    He either does not care or cannot understand how bad it gets.
    If I say I'm in pain he just says 'diddums' :roll:
    Usually we get on great. I made a foolish promise to him when he was in ICU that I wouldn't moan about his car booting little realising that I would have to take him :!:
    My son told him and I try never to break my promises anyway.
    I hate it when he's sad and I'm fed-up
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 24. Oct 2010, 10:04
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    I guess he resents his current health limitations: men are not usually good at dealing with ill-health and if he has some awareness of how his life has altered I guess self-pity is going to be paramount. Is that close to the mark? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    Sharmaine, thanks for replying.
    I have been in touch with Crossroads to see if somebody can help but to be honest hubby is not going to like it at all. I haven't told him and they're coming to do the assessment tomorrow.
    I'm dreading his reaction.
    anne[/b]
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    I guess he resents his current health limitations: men are not usually good at dealing with ill-health and if he has some awareness of how his life has altered I guess self-pity is going to be paramount. Is that close to the mark? DD

    I don't think he is mentally aware enough to resent his situation,
    he thinks he has just retired. There was a lot of damage mentally and I think he's got something called vascular dementia which is quite common with stroke patients.
    I have just written to his doctor for advice on getting him diagnosed, which is a bit difficult seeing as how he doesn't think there is anything wrong :!:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hmmmm. So, not aware of his own circumstances but aware enough to be sarcastic about yours - if indeed he is being sarcastic, but I think it must seem like that to you. I have heard of the term vascular dementia, I think I have read about it somewhere. You said that someone is coming to do an assessment on him - do I have that right? How long ago did he have the stroke? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    Nearly 4 years ago the stroke and he's getting progressively worse. He definately wasn't this bad even 6 months ago.
    The assessment is from Crossroads, a charity that helps out at home. They either sit with people or take them out I think. I'll find out tomorrow if they can help. I have heard they're very good.
    I'll let you know DD what they say.
    Hubby's just going to have to lump it or like it if they can take him out, I'm shattered. :!:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    This sounds like a plan, and we like plans on here! I think that their coming to see him is a good thing: they will have much experience in this field and will know how to handle him. Perhaps he may not like it at first but when he gets to know someone things might be a little better. YOU need support too, daylily, and a break from the carer's role. Do you have any help from social services re the physical care of him? I am guessing that there is a fair amount of lifting etc which must be so difficult for you. Is your GP aware of how much he has deteriorated lately? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    This sounds like a plan, and we like plans on here! I think that their coming to see him is a good thing: they will have much experience in this field and will know how to handle him. Perhaps he may not like it at first but when he gets to know someone things might be a little better. YOU need support too, daylily, and a break from the carer's role. Do you have any help from social services re the physical care of him? I am guessing that there is a fair amount of lifting etc which must be so difficult for you. Is your GP aware of how much he has deteriorated lately? DD
    We don't have any help as yet- getting to the point where we're going to have to have help. I sit on the floor to wash his bottom half then shuffle to the bath and pull myself up with the built-in handles. ( he cannot get in the bath and has a thorough wash down)
    Just written to the Doc for advice-no reply yet.
    Do you know if you have to pay for someone to help out or not :?:

    Bit worried about money with the cuts coming in
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I don't know the possible costs, sorry! It's probably best to contact your local CAB and/or Social Services for info. I hope his temper has improved a little - you should not be the butt of his sulkiness but I guess you are the nearest target. I am sorry I cannot be of much help. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    I don't know the possible costs, sorry! It's probably best to contact your local CAB and/or Social Services for info. I hope his temper has improved a little - you should not be the butt of his sulkiness but I guess you are the nearest target. I am sorry I cannot be of much help. DD

    DD you're a big help believe me. Read all your posts.
    Thank you again for replying. Will let you know what happens tomorrow with Crossroads
    anne
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Please do - I am genuinely interested. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
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    HI daylily

    Just read your post and there is no suggestions from me, I just wanted to send you hugs as it must be so difficult for you.

    Thinking of you
    JuliePF x
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    julie47 wrote:
    HI daylily

    Just read your post and there is no suggestions from me, I just wanted to send you hugs as it must be so difficult for you.

    Thinking of you
    JuliePF x

    Thank you Julie. It's much appreciated :)
  • lululu
    lululu Member Posts: 486
    edited 26. Oct 2010, 15:06
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    xxx
  • dippydoodah
    dippydoodah Member Posts: 350
    edited 30. Nov -1, 00:00
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    Hi Daylili

    Im sorry I dont have anything constructive to say as I can't possibly understand how you are feeling having to deal with Arthur and look after your husband. It must be so hard.

    All I can offer is a virtual hug. I just wanted to let you know I am thinking of you and that you sound like a wonderful person x
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    dippydoodah wrote:
    Hi Daylili

    Im sorry I dont have anything constructive to say as I can't possibly understand how you are feeling having to deal with Arthur and look after your husband. It must be so hard.

    All I can offer is a virtual hug. I just wanted to let you know I am thinking of you and that you sound like a wonderful person x

    Bless you for that dippydoodah
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
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    Hi Daylily,

    I do hope you are feeling a little better tonight. You did very well getting round the car boot sale yesterday.

    I have seen what it is like to look after a stroke victim and it really is a full time job. Both parties can get very frustrated at times. So I am pleased that you are asking for some help. It will be good for both of you.
    Please do not feel guilty about not being able to take him out. You already know it would not make any sense for you to get completely exhausted.
    Hope things go well for you both tomorrow.

    Lv, Ix
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Daylilly,

    Can't think how to help but really hope you can get some flower. Leaving you a ((( ))) and a hope. Cris x
  • cebeem
    cebeem Bots Posts: 472
    edited 30. Nov -1, 00:00
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    Hi just read your posts and sorry to read about your doubly difficult position ..
    I worked for many years in the stroke unit and .Lululu has given sound advice re social services and the things they offer may benefit you both.

    From experience I don't for 1 minute think that he will be doing/saying/expecting some of those things intentionally, I know its extremely difficult for you in the circumstances especially with your own health to consider ...

    The personality changes quite significantly with a stroke too! please don't take his actions personally and try keep his previous personality in mind occasionally hopefully to boost you and encuorage you.

    He is probably very frustrated about the whole situation too without having the ability to communicate his real feelings. He may even welcome some changes/ adaptations to the usual routines, it may relieve some pressures from you both, but it is often difficult to broach.

    I hope this reads ok and comes across as encouraging and informative ...as so often well meaning posts sound harsh.

    Also do not lose sight of your own needs..you too need the unrelenting care that you are giving ...and from the sound of it you are most deserving of that! What a star! (((()))
    My very good wishes to you.
  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
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    Thank you all who posted, it has been a great help just knowing someone will listen.
    I have kept most of it bottled up but I am going to see my own Doctor next week to try and get some more help with arthur. I've just made out a pain diary cos I never say what I mean to when I get there. It's a new Doctor's practice so fingers crossed they will be more helpful.

    Thank you all again for hugs etc.
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
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    HI Daylily

    sending you hugs (((((((((())))))))))) as I can't add much to the excellent advice you have already been given.

    It is very difficult to realise that you need extra help, and sometimes even harder to accept the help that is on offer. Sadly these days sometimes we have to fight to get the help we need too.

    However, once the help is in place I know from personal experience (Mother-in-law swore she would never accept any outside help but has loads now :wink: & really appreciates it) that it can really help to change how things feel.

    loads of hugs
    WOnky
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Morning daylily, I hope the visit goes well today and that there is a positive outcome for you. Keeping a pain diary (and other symptoms too) is a good idea: you need support and help just as much as your husband, possibly more so now as you are his carer. Thinking of you and please let us know how the Crossroads visit goes. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dachshund
    dachshund Member Posts: 8,936
    edited 30. Nov -1, 00:00
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    Hello Daylilly.
    i cannot offer much help.but i send you loads of hugs.
    you are a kind and caring young lady
    and you need care and help as well as your husband and now i hope you get all the help you can.
    take care and try and rest as well.
    joan xx
    take care
    joan xx
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