1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

The Biggest Problems Facing Carers

Discussion in 'Dementia-related news and campaigns' started by Mjaqmac, Sep 9, 2005.

  1. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #1 Mjaqmac, Sep 9, 2005
    Last edited: Sep 10, 2005
    Problems Facing Carers

    In my opinion as a former and present carer I think they are
    1. Exhaustion
    2. Isolation
    3. Lack of resources
    4. Lack of interest from government and family
  2. connie

    connie Registered User

    Mar 7, 2004
    Dear Majic, couldn't agree more. I was going to say especially the exhaustion, but really I go with all four.
    Here's hoping things get better, love Connie
  3. Anne54

    Anne54 Registered User

    Sep 16, 2004
    Dear Magic
    I agree with you completely, but it is so much easier to cope with 2 3 and 4 if you are not exhausted.
  4. carolmillar

    carolmillar Registered User

    May 4, 2005
    Tyne & Wear
    Family also suffer.

    I just wanted to say that I understand how difficult it is for carers but it can also be difficult for family members.

    My Dad lives with his partner of 8 years and has suffered from AD for about the last 2 years. He is currently in the early to mid stages.

    His partner and I sometimes disagree on things and I find it very difficult as I have to rely on her to take care of him. I am always afraid to push my views too strongly as he gets very angry with me and tells me I don’t understand and what would I do without her.

    A recent issue came up around his smoking. Dad has smoked since he was very young, he’s 74 now. A few weeks ago he suddenly decided to stop smoking saying ‘it’s a filthy habit’ and he threw out his cigars, pipe and tobacco.

    His partner rang me with the ‘Good news’. But within 48 hours he was looking for his pipe and cigars again. She was very disappointed but went out and bought more cigars but she didn’t replace his pipe as she said it was too messy.

    Recently he told me he was going to buy a new pipe as he’d lost his old one. He couldn’t physically do this, his partner would have to do it for him so I mentioned it too her. She said she wouldn’t mind the pipe if he wasn’t so messy. His fingers get dirty and this is transferred to his clothes etc.

    I said I realised that but since he doesn’t have much else, we needed to think about it if that’s what he wants. But she said it was her decision at the end of the day. I told her I thought it was actually Dad’s decision at which point she said goodbye and put the phone down on me.

    I don’t know what to do. Am I being unreasonable asking her to take my Dad’s wishes into account?

  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Couple of thoughts on this one.

    Firstly, people with dementia often talk about things like your Dad's pipe. They remember the word, and thus bring it into conversations. Doesn't necessarily mean he really wants to smoke one, though of course, it may do. There's also the fact that he decided to give up smoking in the first place. Perhaps he has discovered he can't manage to give up.

    Secondly, he may have dementia, but he IS a human being, and he has the right to do pretty much what he wants to do, as long as it neither harms him nor anyone else. Carers have a lot to do to help the person they are caring for, but at the end of the day, they are caring for somebody, not for their own convenience.

    I'd take him a pipe and baccy next time you visit, but only YOU know the domestic situation, so only YOU can make that call.
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Magic's post that started this thread was a very good one. Perhaps we can expand it and make it a poll? I'll post one.
  7. carolmillar

    carolmillar Registered User

    May 4, 2005
    Tyne & Wear
    Thanks for that Brucie. I think I needed to let off steam and your response has certainly helped.
  8. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Carolmillar
    my wife has had AD now for 7 years and I believe whether I am right or not, that she can have anything that she wants and that I am able to get for her.
    In Dads case it was his decision to give up smoking,it is now his decision to start again.
    If you can take him a pipe without causing WW 3 do it
  9. connie

    connie Registered User

    Mar 7, 2004
    Have to agree with Norman on this one. I am not quite as strict with Lionel's diet these days (he is diabetic), and he certainly still enjoys two or three glasses of red wine. O.K. we have just had wine stain the new carpet in the lounge, but what other pleasures has he left.
    I can replace the carpet sometime, I cannot give Lionel back his good time of life.

    I do accept that it is easier for Norman and myself, we are caring on a one to one basis, hopefully without distraction from outside. Do hope you manage to sort out your dads problem. Connie
  10. carolmillar

    carolmillar Registered User

    May 4, 2005
    Tyne & Wear
    Thank you all for your advice. I'll talk to her and hopefully we can come to some compromise but I'll let you know how I get on.

  11. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    hi carol i was hesitant to reply to this post ,but there is another side to this ,my husband was quite a heavy smoker ,and it was thought at first he had MULTI INFARCT DEMENTIA, the doc and all the medical people wanted him to stop smocking ,it made sense to me ,but not to my husband ,who use to say it was the only pleasure he had ,however ,being on the lowest level of allowances ,there was no way we could afford the £35 that they cost ,he was aware that we could not afford them but was not well pleased ,we ,or i ,put 10 aday out .not in sight ,so he had to get up for one every time ,this worked and every few weeks i took one away ,by the time he was down to three he was not bothering ,wich was a good thing as by now he was burning his mouth trying to light them ,and i was finding smouldering cigs on the carpet or he was dropping them down the chair ,NOT A GOOD IDEA ,now i would have given him the world ,and bought him a huge telly ,a lovely reclining chair and an electric memory foam bed ,all out off the small savings we had ,but i dont regret cutting the cigs out ,though i sometimes felt guilty of depriving him of this one thing ,i know it was for the best ,ANGELA
  12. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Dear Carol, I can't help feeling terribly sorry for your Dad's relatively new partner. To find yourself caring for someone with AD after only 6 years together must be appalling, and a lot of people would have legged it, I suspect. Of course not knowing the individuals it is easy to say she deserves one hell of a lot of support, but I do remember by father setting a chair alight with his pipe and he did not have mental problems, so they can be a bit of a hazard.
  13. Dianne

    Dianne Registered User

    Sep 5, 2005
    Hi Carol

    My Dad gave up smoking when I was 11 and then when I was 39 he went into a home with AD and straight away started smoking again as if he'd never stopped. We took the decision that if that was what he wanted that was what he could do. His memory was being taken away from him so we thought the least we could do was let him have a 'bad' habit. I suppose we all have our different views and it wouldn't do for us all to be the same.

  14. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Carol,

    It sounds like a bit of a tricky situation. Sometimes these "little things" are really symbolic of bigger issues - like choice, autonomy, power, the role of a partner/carer, etc.

    I would say that perhaps one of the most important things is not to let this issue dominate your relationship with your dad's partner. Whatever the future holds, it's important that you two can still work together as a team for your dad's sake.

    Is there any possibility that your dad could be comforted by having a pipe, but no tobacco? Depending on the stage of his AD, he may find the pipe a reassuring object to hold and be able to accept a number of explanations as to why no tobacco can be had. But on the other hand, this could be a source of frustration or he might shred the ciggies and try and smoke them.

    So much of finding what works (for the moment) is trial and error.

    Take care,

  15. carolmillar

    carolmillar Registered User

    May 4, 2005
    Tyne & Wear
    Hello everyone.

    Thank you for all your advice and sorry it's taken me a while to get back with an update.

    I have considered all your comments carefully and I agree with you Rosalind, it has been very difficult for Dad's partner and I'm very lucky that Dad has her to care for him. This is certainly not what she hoped for when they met but she copes really well and I try to offer as much support as I can.

    But as Sandy mentioned, sometimes these things are about bigger issues and I'm wondering if that is partly the case here. I spoke to Dad's partner again about the pipe and found out that he's actually been asking for his pipe for a number of weeks now but she thought if she ignored it he would forget about it and just stick to his cigars. But it seems that instead of forgetting about it, he's turned to me instead.

    Obviously now that it's clear he's been thinking about this for some time I had to ask her to consider his wishes. After discussing how it could be managed she has agreed to him having a pipe. So I bought one at the weekend and a proper pipe lighter (as we'd rather he didn't use matches). I've decided to put everything together in a heat resistant box and give it to him as a present. I'm going to get him to show me how to fill the pipe and clean it etc. and this way, I'm hoping I can encourage him to use the box to keep everything together which will mean less mess to clear up. Although I did remind his partner that I can't guarantee this will work.

    We don't have the worry of him making a mess on the furniture or burning holes in the sofa or chairs as he only smokes at the back door and he won't take his pipe out with him, he only ever used his pipe in the house and took cigars out with him which he'll continue to do.

    I think that's the best we can do for now.

  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Carol

    sounds like you have a result!

    Congratulations on keeping your cool and working at it. These things are never easy, are they?

    Best wishes

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.