The emotional toll of letting go for a PWD

physically sickIn a blog comment this week about me handing things over to my BUB, I responded with this; ‘I have had to give up a couple of things this week, and hand the responsibility over to Pete.’ I felt physically SICK doing this, and incompetent, and guilty having to do so… even though I know he does not mind at all.’ I had suggested there was a blog in this, and the more I think about it, the more I know it is an important blog to write.

As I asked my DH to take over, the physical response was instant, and has stayed with me as a vague nausea ever since, or at least when I think about it. Prior to the visit to my neurologist on Monday, I had typed up a list of things to discuss, having had my DH review and add to it, in an effort not to forget things when we went in. On the day, my speech was not brilliant, and so I handed this job of communicating with the specialist over to my BUB. He needed a very strong reinforcement that it was ok for him to take over, and in fact not what I wanted, but what I needed. He looked vaguely distressed about it too, as this is new to him. He probably felt sick about it too.

I have had to accept help from family and friends for transport for years now, but still feel like I am a burden, even when reassured I am not. There are quite a few other areas where I have had to relinquish things and accept assistance, like the Webster packs to manage my medication.  Each one sounds simple, and helpful. And they are. But if I group or list them together collectively, they start to add up to quite a list, even though to an onlooker I am still functioning in so many areas. The only way I have been able to cope it is to see them as disabilities, which also empowers me to rise above them.

The fear of losing a function or ability is powerful, and has helped me fight against the symptoms of dementia, has helped me stay motivated to treat them as disabilities. But as the disabilities worsen, and I need assistance or the help of someone else taking over, the fear the ability will not come back is reinforced. The grief is heightened by this fear, and sometimes anger or anxiety, and the ability to jump into the denial bubble burst with a great big bang! I feel guilt for beinga burden, even though my DH reassures me he is there for me, and wants to help. In fact he says, he wants to help, whenever I need it. And I believe him. I know I would be the same, but this knowledge does not easily remove my burden of guilt.

My husband and I are in it together, I know this 100%, and believe it 100%. I know I would do exactly the same for him, or my children or best friend or other loved ones. I just never thought about needing this kind of help myself. Having nursed, and been a mother and a volunteer, I have always helped others, and I find it very challenging to hold out my own hand, and asking for or accepting help. Self love allows me to feel worthy of the help (thankfully), but still does not stop me from objecting!! I have often advocated for the plight of those groups of people who are marginalised or less well off than myself, and it is hard to put myself in that same category.

It is human nature to become too attached to things or people.  And it can be very difficult to find out how to let go from these attachments even if we know that they are not good for us. I wonder though, is being attached to our own ability to function wrong? One of the first things to do in letting go is to have a good hard look at the thing/s you are letting go of, are they really that good for us? For the person with dementia, it is not easy to believe losing something like the ability to recall/remember is not valuable to our life. Facing the emptiness casued by the loss of a physical or mental function is extremely difficult, not at all like giving up cigarettes or eating too much fatty food.

One of the best ways to help with the pain of letting go of something is to wrap yourself in love; family, friends, other people to love and support you. I do have this, and am ever grateful for my wonderfully supportive husband, children, special friends and global community.

25 thoughts on “The emotional toll of letting go for a PWD

  1. I know your husband is soooo proud of you Kate as I am and how you have coped is amazing-wished I lived closer to you so I could help you out. Family support during those difficult times is soooo important. Keep up the amazing work and take care❤️💙


  2. Pingback: Dementia and ‘letting go’ #DAM2015 Day 23 | Creating life with words: Inspiration, love and truth

  3. Just signed up to follow your blog. I found out about it from a post on Amazing Susan’s

    You are right on with your “Poster Talk” on Whose Got The Challenging Behaviors? Sometimes I think it is the memory care facility, the caregiver whether hired or family. We all have best of intentions but you are right that labels, and language cause us to misinterpret what is really going on!

    My partner Gregory was diagnosed with Alzheimer’s Disease some 11+ years ago. We have been in a committed same-sex relationship for 40+ years.

    Last year his needs became so great that I couldn’t provide at home for his needs so he is living at a memory care facility ten minutes from the house. I visit every day and have a private care worker for him from 11:30-5:30.

    Language has been difficult for Gregory for a while now but I know and “understand” his needs based on our long relationship and the little bit he is able to communicate. I am very active in communicating his needs (and when they are not met) with the care workers. The facility does a good job and they provide a loving environment for Gregory but as in most places, there just doesn’t seem to be enough people on duty and enough time to provide enough care.

    I am not one to sit by when things that seem so obvious to me are overlooked so I am very active in not only sharing my observations but also “rolling up my sleeves” and helping. When the private care worker is with Gregory at meals I circulate the dining room as a good will emissary chatting up the residents, helping cut up food, getting them seconds or an alternative choice. So many of them are happy to see me and wave across the room and sometimes they will ask me for a favor.

    Gregory is well taken care of, content, happy, and safe. What more could I ask for.

    I send you my positive energies and love in your role of really experiencing dementia from both sides. You are a hero. You are brave. That may or may not help with the day to day but I believe people need to hear that now and then!

    I have been keeping a blog of Gregory and my journey for the last five years which includes over 1057 posts and approaching 50,000 hits! May I share it with you:

    Thank you (and your DH) and I look forward to reading future blogs from you.

    Michael Horvich


    • Thanks for joining the conversation here Michael, and thanks to Amazing Susan for connecting us. All the very best with your support for your partner Gregory. We were lucky to have a beautiful gay couple Edie and Anne from Ballarat open the ADI conference in Perth recently, and it is good that the needs of this community, your community, are being more carefully considered, including INCLUSION. Take care, and please contact me via my contact form if I can support you more in any way. Hugs, Kate


      • Thanks Kate for the work you do. Good to be in touch with you. Am about to watch the documentary you were part of. Just recently a group of four students did a documentary about Gregory and my journey with Alzheimer’s as part of project for their Chapman University class called “Community Voices.” It will be featured eventually on PBS and they will enter it in various film festivals. It will eventually be posed on my blog. They did an amazing job of distilling 40+ years of our relationship and 11+ years of our living with Alzheimrer’s into a 15 minute documentary. It is all about one thing: LOVE!


      • Kate, I’m pleased to have introduced you to Michael, and vice versa.

        I hadn’t read this post before, and so many things about it resonated with me and in particular with respect to a post I wrote myself today. There is so much associated with this disease that has to do with power and control versus power and surrender. And somehow, joy and connection is in there as well.

        I’m not sure how all the threads of the tapestry intertwine, but this is a very simple post I wrote today about the experience of being with my mom a few days ago; somehow it encapsulate it for me:

        It’s hard to convey the deeply enriching spiritual and personal experiences I have with her. This is a feeble attempt, but the best I can do with my limited capacity.

        When I read what you wrote above, I felt similar themes running like rivers through our lives. Our experiences are not the same, but the archetypes and our humanity are. This is struck me.

        It may sound strange, but to me there is a gift in this journey of dementia. I see it clearly in this blog post you wrote more than two years ago, in the same way that I felt it when I walked across the room with my mother two days ago.

        This is life. This is love.

        Thanks once again. You are inspiring people worldwide. What an amazing destiny. ❤


  4. always hugs and kisses dear one, your words are truly truly inspirational. yes i like robyn wished i lived closer to help if only a little, but alas that is the way it is. keep up your brilliant work. love you xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


  5. Pingback: Reflecting on 2013 | Creating life with words: Inspiration, love and truth

  6. I have just re-read this Kate, and it really is a wonderful and very important blog. Thinking of you and your family and thanking you for the sincerity and truth with which you are sharing your story and raising awareness across the world. xx


    • Thanks Gill… sometimes it is very difficult sharing so much, but it seems, the value for others is important so while I can I’ll keep going. In spite of the doubters and those who suggest I don’t have dementia, or should stop writing…


  7. Dear Kate,
    I am proud of you. You wrote about our feelings very well. I am a person with Alzheimer’s and I can understand you very well. Be grateful for your good husband and friends. I like one sentence from very clever man: Forgot your trouble and serve to other. I know it does work very well. And you know it too, as I see in your blog 🙂
    With love and gratitude Nina


  8. I’m so sorry that I can’t offer any advice …. you know so much mmore about this all that me. You are so rational thinking in what you’ve written.

    Would it help you to go and speak to a counsellor? Then at least you could print the above post, take it along and talk about it …… if you can’t talk because you’re too emotional you can just show them what you’ve written and write down other things as needed………

    Maybe this would help. It can’t hurt.


  9. Wow! This blog is so full of things to think about, I can’t immediately respond sensibly. How well you express yourself, Kate. What (apart from love and writing) would help you to deal with these things? Are there things people could say when they sense you are reluctant to ask for help but need it?


  10. Kate my dear friend,
    I cannot imagine having to relinquish any part of myself to a disease, I truly don’t know how people do it and do it gracefully! It is truly having to give up a part of yourself. I guess the best way to deal with it would be to try and focus on the purpose this disease has brought to you. We all come into this earth school with a purpose and a knowing of what our lives will be like. That in itself is pretty incredible to think about. How brave we all are to take on some of the issues we must deal with. I think your honesty in dealing with this is vital for both you and those you are hoping to help. The fact you write so well makes it hard to imagine there is anything wrong with you, so your tales of day to day living are what bring the message home for people. It is so brave of you to share them and that sharing is what will get the message out there. As I have said before I just thank God for HubbyBub and your family and friends. I know no one can completely dispel your anguish within, I wish they could. With the down fall of the dark ones, just maybe medicine will take a dramatic turn and new possibilities for healing will be allowed to see the light of day! Hang tight, we are almost there! Blessings and love…VK


  11. Such a humbling blog. I can’t imagine the desperation and fear that you face every day and so bravely. Thank god for your DH. Your friends are privileged to know you and that has grown, not diminished one whit. Much love xoxox


  12. Oh my darling friend, I know I shouldn’t but I shed tears for you all, the love you all have is worthy of your blog. You & BUB are amazing and I wished I lived closer to help more


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