Hi everyone – my name is Paul, and I am a Marie Curie Online Community volunteer. I am really looking forward to contributing to this forum.
My parents both died several years ago – my Dad very suddenly and unexpectedly (he died in his sleep), and I then became the primary carer for my Mum who declined over a period of years with Alzheimer’s – both very different experiences of grief.
I hope those, and other, life experiences will help me to support others here in whatever way I can in this safe environment.
So very glad to have you on board. I am sure your knowledge and experience of losing loved ones will prove invaluable when responding to the very varied communications that are posted on-line.
A very belated welcome from me, too! It is great to have you on board.
Thank you also so much for sharing your background and how you have come to volunteer here. It sounds like the experiences of losing your parents and caring for your mum - which must have been intense - have also inspired you to try and communicate with others here on this forum who may be going through related experiences. Thank you for this already.
If I may ask a question on behalf of a friend whose parent has recently been diagnosed with dementia and who is experiencing anticipatory grief: would you be comfortable sharing anything about the experience of looking after a loved one whose mind or personality are affected by Alzheimer’s? Is there anything that you wish you had known from the start, or anything that helped you and your mum in her final years?
Apologies for the late response - I have been away for a few days.
I am sorry to hear that your friend’s parent has recently been diagnosed with dementia - it is a wicked disease, and horrible to have to watch someone go through it.
I think the hardest journey is for the immediate family, and indeed anyone providing care. I was my mum’s primary carer, and I think that is just the hardest thing - the patient sees you as the one making all the decisions which you believe are in their best interest, but they don’t necessarily see it that way! I recall my mum saying something really hurtful things to me, and about me to others (including telling Social Services that I was the Devil!) - it hurt at the time, but I can now reflect it was not the person you know and love saying those things - it was the illness.
I think you have to try and accept from the start - and as frustrating and testing as it can be, try to keep that in mind, and remain as calm and friendly as you can with them, even if you have to repeat something for the umpteenth time today! It is so hard for the carers, whereas for the patient, I guess they may experience some frustration in the early stages as they realise what is starting to happen to them, but in the latter stages, they are off on their journey in their own little world, oblivious to the stress the carer is feeling - and recognising that can maybe help alleviate some of that stress.
I was lucky in that my wife was a great support to me - not least we had been through it previously with her dad. But there is lots of help and support out there, such as The Alzheimer’s Society and Dementia UK, both of which can offer information and support.
I do hope your friend’s experience can be made easier with the right support. If they have any specific questions they wish to ask, I am more than happy to try and help further.
Thank you so much for sharing your experience, Paul. Your insights are much appreciated. I will share them with my friend, and point them into the direction of support as well as offering a friendly ear whenever they want to talk, or just want some company.
Welcome to the Online Community, @PaulC. Thank you so much for writing your first post and sharing your experience with everyone. We’re very grateful that you’ve decided to share your experience and knowledge with us, and I’m sure this will be extremely helpful for others who may be affected by Alzheimer’s.
@Daffodil we’re sorry to hear about your friend’s parents. Thank you for posing such thoughtful questions to Paul. I’m sure you’ve thought of this already, but if you would like to make them aware of our Online Community, Support Line and website information you would be more than welcome to do so.