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.

  1. J2e

    J2e Registered User

    Apr 24, 2015
    27
    Brighton
    Hello,

    I'm a newbie to Talking Point so thought I'd introduce myself.

    11 weeks ago my Mum left me permanently. 13 years ago she started to leave me through vascular dementia. Between then and now I've dealt with various losses, as I'm sure you all have too.

    I did OK with Mum's disease in the early days when she was still a bit like the Mum I knew and loved. I struggled with the middle years when she became someone aggressive and unpleasant - and I distanced myself at this time (this is where my guilt kicks in now and again - but I've been experiencing that now and again for years). 8 years ago Dad and I chose a home for her to move to - this was probably about the last time she knew who I was. 4 years ago my Dad died and I, as the only child, took up POA and administration duties. And was the prime visitor. I live 250+ miles away from where she was living, so I was a monthly visitor and supplemented my visits with postcards - mainly made from photos of her, or the family. I enjoyed this re-engaging process, and looked forward to my visits.

    Last June she had a bad chest infection and I almost lost her. But she was a strong lady and battled on, and I was truly delighted to be able to deliver her back to her care home. I savoured my monthly visits to her as it felt like these were a gift that I could have lost. In early January she had another, milder, chest infection and recovered, and then at the end of January came one infection too far (possibly swallow reflex related) and she went into A&E on a Saturday morning. I met her there on Saturday afternoon. On Sunday morning they withdrew active treatment and I basically stayed by her side until Wednesday morning when she left me. That was 11 weeks ago.

    I almost certainly didn't grieve for Dad "properly" as instead I focused on Mum, and her care and making sure she was as comfortable as she could be. So in some respects I'm now grieving for both of them, and in some respects more for Dad.

    When Dad died I missed being able to call him, email him, text him. I missed being able to get a huge hug when I arrived at the house. I missed so many things. Because of the state of Mum's disease - she had very advanced dementia - I've missed these things from Mum longer than Dad has been gone.

    So, that's my introduction.

    I've been having some bereavement counselling over the past few weeks. Mainly because my company offers it as part of a benefits package and I've been trying all sorts of things to see what helps (books, pilates, meditation etc). Last night my counsellor asked if I realised it was very early to be having counselling. But then also said something about it being a long time since I've had "functioning parents" (my term not hers). I'm not sure the counsellor understands the gradual loss that dementia brings with it and the impact on our lives. Which makes me wonder if I should try someone/something else?

    So, has anyone had any bereavement counseling? And did you find someone who did understood the difference that dementia brings? Do you even think it is different?

    Thanks for reading,
    J
     
  2. pippop1

    pippop1 Registered User

    Apr 8, 2013
    518
    #2 pippop1, Apr 24, 2015
    Last edited: Apr 24, 2015
    I am a volunteer bereavement counsellor in my local area. As it happens my MIL has dementia and lives in a CH.

    The organisation I volunteer with has first contact with clients at all stages of bereavement, sometimes years and years after the first loss and sometimes at an early stage.

    Sometimes it is too early to begin counselling and sometimes not. It's such an individual thing and additionnally one bereavement often triggers memories in clients of another loss in the past which compounds their current loss.

    My advice is if it's working for you go with it. If not wait and try again in a few months time.

    Your counsellor should understand about the loss associated with dementia but not all counsellors suit all clients so if you are not happy consider if this is the right person for you.

    Without being rude, it is not the role of a counsellor to tell you about their personal experiences so you will probably not be aware as to whether the counsellor has experienced dementia in their family/friends or not. It is your experience that is important.

    Often when there is first a bereavement there are many administrative and sorting out type matters to attend to and this keeps the mind as well as the body busy. After these have been dealt with it is sometimes then that the reality of life without the person who died needs to be faced. There are also times such as a birthday, a wedding anniversary or the birth of a grandchild which can trigger the need for counselling.

    Wishing you well Newbie.
     
  3. J2e

    J2e Registered User

    Apr 24, 2015
    27
    Brighton
    Thanks!

    Actually one of the books I've read suggested we should ask the counsellor what experience they have. To see if they can empathise as well as be more objective. I didn't see the relevance initially but I think now I understand why that's useful.

    And it's my first parent-less birthday next week so we'll see what emotions that stirs up. All manner I expect!

    Cheers
    Jane



    Sent from my iPhone using Talking Point
     
  4. pippop1

    pippop1 Registered User

    Apr 8, 2013
    518
    Maybe do a little something nice for yourself on your birthday Jane. I know someone whose parent loved books and they always buy themselves a special book on their birthday now that their parent isn't around anymore.

    Wishing you peace.
     
  5. J2e

    J2e Registered User

    Apr 24, 2015
    27
    Brighton
    Good idea! Mum loved music - singing in a choir, watching musicals, listening to classical - so maybe something related to that. Tickets or a CD or something. Thanks!


    Sent from my iPhone using Talking Point
     
  6. tinap

    tinap Registered User

    Nov 2, 2014
    41
    west midlands
    Jane I think if I was having counseling I would feel better talking to someone who had been through the loss of someone with this horrible disease. somehow its different than losing your loved one to other illness, has you grieve slowly over the years before they finally pass. Its so true when they say its the long good bye. unless someone as cared and loved through this no one can truly empathise, they do understand the lose and grieve I'm not disputing that and if it gives comfort to be able to share your thoughts and feelings then there is good coming from it.
    I do feel for you with your birthday coming up the first one is the worst but try to remember the wonderful ones you shared and do treat yourself to something.
    Thinking of you Tina
     
  7. J2e

    J2e Registered User

    Apr 24, 2015
    27
    Brighton
    Thank you. My birthday was ok. A good, kind, supportive friend took me to lunch. And my husband took me to dinner. There were tears. And also some nice times. I looked at photos from my childhood birthday parties. It was fine.
     
  8. sunray

    sunray Registered User

    Sep 21, 2008
    1,425
    Female
    East Coast of Australia
    I had counselling after I lost my husband in September 2012 and my Mum two months later. I held it together till after Christmas but by the end of January 2013 I knew I really needed help. I was simply not functioning as I wished to. I chose a counselor connected to the Salvation Army and was lucky to find one whose methods I could understand. She mostly let me tell my story and used reflective listening , a Rogerian method.

    I had six sessions with two weeks between each. She mostly let me talk (or cry as was often the case) through the one hour session and at the end she set me homework. Something like "contact six friends you haven't spoken to for a while" ( because I said I no longer had any friends I could relate to)or sit down with a photo album with your Dad in it and see how many of his stories you recall, (my Dad died in 2000 and I had never had time to mourn him) I found the homework really helped me with to think about the problems as having a solution, a positive step in my recovery.

    I agree that this may not be the time for you to get counseling and the method this counselor uses may not be helping, so maybe have a month or so off and then if the counseling still doesn't help maybe try another counselor. For me their personal experiences are unimportant, I prefer the focus to be on finding a new way of looking at my problems with a view to coming to an acceptance of what has happened.
     
  9. J2e

    J2e Registered User

    Apr 24, 2015
    27
    Brighton
    Thanks sunray. That all makes a lot of sense.
     

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