1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. brambles

    brambles Registered User

    Sep 22, 2014
    228
    Female
    NW England
    A few days ago I took my mum (90 mild/moderate Alzheimer's) to her GP as she had been called in for a review.

    The doctor was lovely and went through all the usual questions, weighed her and took her blood pressure.

    She then said to mum "I have to ask you something and I don't want you to be upset.
    Do you know what resuscitation is?"

    My jaw must have dropped to the floor as I never expected this.

    Mum said she did understand it was bringing you back to life if you had a heart attack.

    She asked mum if she wanted this to happen to her.

    Mum quickly answered she did not want saving as she had had a good innings and didn't want to be a burden to her family!!

    The doctor and I both immediately assured her she was in no way a burden.

    The doctor asked if we had ever discussed this....we hadn't... and asked mum if she would like time to talk it over with me. Mum said ...no, she was certain that was what she wanted and the doctor said we should respect her wishes and that she would fill in a DNR form which would be posted to mum at home.

    I felt terribly upset. Mum is normally a very positive person though her mood has become lower in recent weeks as she seems to have become more aware of her limitations and begun to realise that her memory wont improve" when she has had a good nights sleep" , or " when the weather improves."

    Of course I will speak to mum again when the form comes and I have found the words.
    I do not necessarily think she has made the wrong decision, but feel she may have made it for the wrong reasons.. I realise this is not irrevocable but feel distraught that she feels her life is not worth saving.

    I feel torn because I have already told my children that when my time comes I want a peaceful and dignified end even if it shortens my life.

    I thought I might be asked this question when mum was in the late stages of the disease , but not at this stage. Is this usual?

    brambles
     
  2. Livveywills

    Livveywills Registered User

    Jul 11, 2015
    57
    We covered that question when we were doing the healthcare part of power of attorney. Mum was pretty upset by it as the end is not something she wants to ever arrive at. It was helpful for us as we came to a conclusion that mum did want to be resusitated but ultimatley we should be guided by the doctors at the time.

    Guess its better to have the persons thoughts on such a big deal while they can still make them?
     
  3. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    Hi Brambles
    I've read some other threads about DNR and there are some good reasons why people make this decision and it is offered to the elderly. I believe the CPR process can be quite forceful- the chest compressions are hard enough to break ribs in young fit people and would inflict quite serious injuries on someone frail and elderly with possible weak or brittle bones. This would have been considered I am sure by the Dr who raised the subject, perhaps a better explanation would have been in order. There's a lot of info about the pros and cons of DNR on the internet so have a google and get a balanced informed view.
    So far as I know Dad has never been asked about it although seriously ill on many occasions. He has expressed his wish for no more medical intervention as he is fed up being prodded and poked so often but no DNR form. This is usually a prominent form in red placed on front of D/N yellow folder so that any visiting paramedics know the score
    The DNR will not prevent intervention such as antibiotics for infection or pain relief etc.
    Once you have more info about it, have a chat with your mum so that you are sure she is aware what and why she has asked for it.
     
  4. brambles

    brambles Registered User

    Sep 22, 2014
    228
    Female
    NW England
    Thankyou for your replies.

    Yes, at least if I am ever asked the question I will know for certain what mum wanted whilst she still had capacity.

    I also am aware how awful CPR can be and what a poor outcome it can have.

    Its just very hard to face the fact that she has probably is getting to the stage where she has had enough.
    She used to always say she was not going anywhere till she had seen her grandchildren graduate, then till they were married , then till great grandchildren came along. Now she has lost interest.

    I have decided I am going to tell her how much she is loved by us all and that she is not and never will be a burden to us and to think carefully about the DNR. But I will respect her wishes whatever she decides.

    brambles
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    It is part of the requirements now that both doctors and care homes ask the question. It is about understanding peoples' end of life wishes. It's a hard one really because it is easy to think that it is because they think you are nearing the end but it isn't that at all. It is part of the 'care pathway' that people are involved. A lot of people have felt over the years that they haven't been asked the questions and they didn't want to be kept alive and 'why did they resusciate me?' . Personally I think, hard though it is, it is much better discussed and as I get older I get much clearer in my thinking about what I want for myself, including funeral plans etc and I hope that I am way ahead of my death but the planning is important for those I will be leaving behind.
     
  6. brambles

    brambles Registered User

    Sep 22, 2014
    228
    Female
    NW England
    Thanks Fizzie.

    All the replies are making me think that it was probably a good thing to have been asked.
    I just wish I had known beforehand...but honestly don't think I could have brought it up with mum myself to discuss before we got there ... so apart from reducing my shock it wouldn't have made much difference anyway.

    brambles
     
  7. Slugsta

    Slugsta Registered User

    I got EPA for Mum's finances several months ago and now need to get on with the Health and Welfare one. I was talking to Mum about this one day and she seemed more 'with it' than she had for a while so I thought it was a good time to raise the subject. I explained that the EPA would allow me to make decisions when she was not able to and said that it would be helpful to know how Mum feels about CPR. She said that she would want to be resuscitated under any/every circumstances. I'm glad I asked as her reply was not what I had expected!
     
  8. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    806
    At the end of the day this is a medical decision,Drs will discuss with family but aren't bound to attempt CPR if they decide it's not a medically sound decision.
     
  9. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    806
    At the end of the day this is a medical decision,Drs will discuss with family but aren't bound to attempt CPR if they decide it's not a medically sound decision.
     
  10. brambles

    brambles Registered User

    Sep 22, 2014
    228
    Female
    NW England
    The DNA form arrived today. Mum had opened it and didn't know what it was.

    I took the opportunity to explain she was not any kind of burden and hoped she had not decided not to be resuscitated because she though she was.
    She said that, no, she wasn't agreeing to it for my sake but for her own, because

    "If I am ever that ill, I might get put in a home and I would rather die than that happen to me"

    Oh dear!

    brambles
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I know it sounds scary but she has obviously thought it through which is really positive. Some people fill in Living Wills which are also really useful because they outline in detail when someone wants treatment and when they do not. Although there are some instances (as there are always exceptions) when these are not respected, in main these days they are. It is a very useful document for the family because they know exactly where they stand and what the persons wishes are. Just worth thinking about as your Mother is so set.
     
  12. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    I went to a talk given by a Senior Clinical Lecturer from Marie Curie Palliative Care Research Dept. She suggested thinking of it as allowing a natural death rather than the intervention of resuscitation. She said resuscitation is not how it is shown on TV. It is generally messy, stressful and definitely not peaceful. She advised CPR for those with advanced dementia is usually unsuccessful and if it does succeed there is usually further brain damage. A study of 19 patients with advanced dementia revealed 18 sustained rib fractures, some having up to twelve fractures.
    For all patients in hospital experiencing CPR , even for those aged under 50 only one third survive. For hospital cases for those aged 70-79 less than 20% survived. For those over 80 less than 10% survive.In care homes and domestic settings these survival rates are lower.
    Obviously this decision is everyone's personal choice but knowing these facts my stepsons and I made the choice of a natural death for my husband. He died in December and in the event his death was not the type in which CPR would have been appropriate anyway.
    If anyone is interested in listening to the talk it is available on the PCA Support Group
    Website. www.pcasupport.ucl.ac.uk I do not think I am allowed to give the lecturer's full name but the first name is Liz and the talk was given at the Carers meeting held on 18 Nov 2015.
    Tre
     
  13. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Brambles, I am sorry to hear of your upset about the DNR and related paperwork.

    I think it *is* very upsetting and startling, when you don't know this discussion is coming. I think many of us have been blindsided by just this sort of situation. (I know I was!)

    It sounds like you are struggling less with the realities of what CPR can do to an older person, and more with your concern that your mother might not want to live as long as possible (but feel free to correct me or tell me this is none of my business, please) or feel she is a burden or, worse, unloved.

    And now, the additional upset of hearing your mother say she would rather be dead than live in a care home, when we all know there may come a time, even if just for respite, not a permanent placement, that a care home may have to be considered.

    It's all a shock and very unpleasant and upsetting.
     
  14. brambles

    brambles Registered User

    Sep 22, 2014
    228
    Female
    NW England
    Thankyou everyone for your replies.

    Amy you absolutely understand what I am feeling. It is not her decision that is upsetting me, rather her reasoning behind it.
     
  15. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    OK, brambles, I wasn't sure if I was on the right track or not. I am sure it's very upsetting for you to think about your mum in this way.

    I am thinking hard about what to advise you, and I am not sure. I find myself wanting to reassure you, but am not sure quite how to do that!

    Perhaps your mother is not feeling well, or not feeling herself, or even feeling a bit of depression, which is leading to these statements. It's hard to know. Perhaps your mum is feeling not as useful or as connected as she used to, when she was younger. It's just a guess, but it's not an uncommon experience as we age (dementia or no dementia!).

    That makes me wonder if looking through photo albums, inviting your mum to reminisce or tell stories about friends and family and happy occasions, might be a way for your mother to feel a little more connected.

    I also wonder about giving your mother "jobs" to do. Nothing strenuous, or actually important, but something like folding the washing or sorting something. Mostly an excuse for you to say, Mum, I was wondering if you could help me with the (whatever), and then a chance for you to say, when she's done it, Oh, Mum, thank you for folding the towels. I really appreciate your help with that.

    Or perhaps there is something from your mother's past that would resonate with her, or that she would especially enjoy?

    You may already do these things, or you may have tried with no success in the past. I do not mean to judge or criticise in any way, just to try to think about things you and your mother might do, that would help her to feel useful and connected, and also to have pleasant and positive feelings connected with family members. (We do all like to feel useful.)

    And even if you are not sure it has any effect, if it's something your mother can take pleasure in, in the moment, then that's reason enough to try it. It also might be a way for you to feel better, because you will be working on communicating to your mother that she is still loved and needed and a part of the family.

    Others may have additional ideas and suggestions and apologies if this is all off base!
     
  16. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    I have to respond to you in order to send you huge support. My brother was asked that question when he was very ill with cancer. We were with him at the time. He did not want to be resusitated. We were shocked at the time.

    It is a frightening question.

    Huge hugs going to you.

    Aisling
     
  17. Lawson58

    Lawson58 Registered User

    I am in my 70's and I know I think about death and dying quite differently to how I did a few years ago. And after talking with friends in the same age bracket, it seems to me that it is not the prospect of dying that is scary, it is thinking about what will be the nasty thing to take you out. I recently had a cancer scare and I know that I would have thought long and hard about having treatment as opposed to palliative care and having the choice to make that decision for myself was very important to me.
     
  18. brambles

    brambles Registered User

    Sep 22, 2014
    228
    Female
    NW England
    #18 brambles, Feb 18, 2016
    Last edited: Feb 19, 2016
    Thanks again everyone.

    Amy, your suggestions are very good and along the lines I have been thinking of myself. Unfortunately she has very poor eyesight (AMD) so photos are out, but she does love talking about the past and I do try to let her do any little jobs she can manage. I think she will buck up when the weather improves as she lives by the sea and once I can take her to sit on the promenade I am sure her mood will lift.
    I will try hard to make her realise how important she is to all the family.

    Aisling...thankyou it is a shock when you hear someone agree to a DNR when you did not expect it.

    Lawson.....Yes I can imagine that ones thoughts on death and dying will change considerably as you get older.... I suppose I just always thought mum would fight till the end.

    brambles
     

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