Letting go

/ December 7, 2015

Slide1One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning.

I am not talking about physical functioning, as I was and am very used to that happening. Needing reading glasses was the first major step towards that, and possibly giving up playing squash the second!

I’m okay about my hair going grey, I’m okay with my wrinkles that mean I have lived and loved, I’m even reasonably okay living with the ongoing chronic pain of severe arthritis and other chronic conditions.

Accepting that I can no longer manage medication, nor sometimes work out how to get dressed or make a cup of coffee is emotionally debilitating. My maths ability has been impaired for some time, but now, it is so impaired others have talked about it, and suggested to my husband perhaps it is time I let go of doing more things.  Of course, we have had to go through the pain together this weekend, as it had to be brought up…

I find this to be part of the process of letting go of the many things you lose with dementia, but in contrast to when you are letting go of someone you have loved, you still have your functioning and abilities in tact. When you let go of someone who has died, you still have your functioning and abilities in tact. When you lose a job, you still have your functioning and abilities in tact. When you lose friends (except when this happens after a diagnosis of dementia), you still have your functioning and abilities in tact.

If you have ever wondered why people with dementia act in ways that are hard for others to live with, manage, accept, then please think about what it is like for us, the people diagnosed with dementia, who are losing our functioning and abilities. We are changing in ways that you are not, yes, but we are also losing so much of our identity, who we once were, perhaps even who we wanted to become.The future looks grim, and our past, sometimes even this morning or yesterday, is fading, perhaps not even to become a distant memory for some of us.

Letting go is hard to do, especially when you have nothing else to hold onto… or look forward to, which is why it is so very  important to completely ignore Prescribed Disengagement™® , and Live beyond dementia™, for as long as humanly possible.

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54 thoughts on “Letting go”

  6. Thank you so much for sharing this, since I presume it might have been hard for you to do so. It is very important that the wider community understands all of this. Hopefully the insight into what you are experiencing will be useful to and used appropriately by many people.

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    • Thanks Janet, and yes, it was hard to share! But it is important the reality of our world is explored and shared. My concern continues to be, mostly the tragic side only is shared, and so I work hard to show we still LIVE following a diagnosis, some days are good, and some not quite so good…

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  9. My heart and head cry out loud for you and all others who have gone or are going or will go through this experience. Oh that I could make it all go away, be OK or be better for you, dear friend, like I tried so hard to do for Gregory. There is no way to pet you and say it is OK. It isn’t! But know that LOVE does the best it can to replace those losses. LOVE by you and for you. For and from your husband, family, friends, BLOG readers, and so many others whose lives you have affected and influenced and made better!

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    • Please don’t spend too much time crying out for us… it is what it is dear Michael, and life with dementia has not been anywhere near as bad as SO MANY without dementia themselves keep declaring so publicly, now and before me. Even if it was cancer or MND or some other terminal disease, it would be awful some days, but the world would not continue to label us ALL sufferers. Love you for your compassion and that your beloved Gregory was not a victim of dementia, but your hero xox

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  10. ……Dear Kate,…I understand what you are saying……..this disease is a horrible way in which to spend our latter years………but you are inspiring, more than you will ever realise…..don’t give up, your life has changed dramatically, but you are doing better than most, give your brain a break now and then, take time out for yourself……….you have many admirers/fans, and we all love and pray for you and want you to be safe and around for a long time yet…….

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  11. Kate, I work with people living with dementia each and every day, and it does happen that ‘one day’ they cannot do something that they could do the day before. It makes my heart bleed for them. They often have something to say, like “I cannot understand why I can’t do this” I am so sad for them, but I do also continue to assume that perhaps tomorrow, or on a better day, they will be able to do “it” so I continuously offer that ability, even if perhaps they are ‘past it’. I don’t give up on ability and function. I continuously offer it to people who are maybe beyond the uptake, but hey, you need to offer that chance, don’t you????
    Such is life.

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    • I keep trying too… but this latest bout of lost functioning, there are too many others who are saying no, she’s trying hard, but she’s simply not up to it anymore. 😦 I simply have to find other things that I CAN still do, or maybe even some new talents! xx

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    • I’m sure it will be different for her, but some things are similar for us all, and if she is not willing or able to share with you what it is like for her, then I am glad this is helpful, even just a teensy weeny bit xx

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  18. Dear Kate,
    Your words brought tears to my eyes.. I can’t find the words to say what goes through me. I admire your courage and strength. you, your words inspire me. Thank you for being the amazing person you are.
    Nadine

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    • Thank you Nadine… your words are healing. I had a lot of tears yesterday, but today, I am up again exploring it all, and working on other ways to live beyond dementia, and in spite of it! x

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  19. Hello Kate. We’ve never heard of each other until this moment, though I probably know you better already than many others know their nearest and dearest. I read your blog via a friend’s Facebook. What a precious gift you are offering in sharing these minute details with us as you journey in to letting go. We will all have to do it in different times and timing and with your shared wisdom and journeying, we have the chance to do it more smoothly, lovingly and effectively. I wish you and your husband a song of recognition in the heart that can never be lost.

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  20. ((Hugs)), I agree…we take a hit each time a thing is lost. But with time and distance you may find that the sun continues to rise, and you still are you, wonderful you, whole and complete. The tasks didn’t make you you. I am always surprised that no matter how much is lost, my heart is still there…yours seems to be too. ❤ Wish I could make the journey easier for you.

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    • Thanks Faith… I know my heart and soul are still in tact, but really do miss and grieve the knowledge and functioning I am losing… it will not stop me though, and I will find new ways of LIVING BEYOND dementia every single day! xx

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  21. Your posts are an emotional reminder to me to try my best to understand and empathise, give mam time to process what im saying or doing. I felt blessed tonight when mam openly said I don’t understand what your saying, I felt I had her trust in me for her to be honest, i worry and try to,put myself in her shoes I hate to think of her feeling scared or unable to express herself, i know she often doesn’t remember me as her daughter but she recognises me as someone who loves her and she feels safe with x

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      • It is Kate she should and deserves to feel safe and loved, not recognising me as her daughter Will be far more distressing for her at least I can understand what is happening, mam is sometimes very lucid, and i used to sometimes think is she testing me, but I think it’s her coping strategies she’s 90 this year on Boxing Day, I’m massively proud of her determination I fear I wouldn’t of managed as well if I were in same situation, who knows, your blog is invaluable, it always stops me and makes me think about life, thank you for sharing yours x

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  22. I love reading your words. As i sit here looking after a lady with dementia as part of my work. Everything you say helps me to be more aware. Thank you.

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  23. Such a heartbreaking post. . . I tried to keep this forefront in my mind as I interacted with my dad. I had to learn to stop asking, “how was your day” or “what did you do today”? It just made him feel badly because he couldn’t answer those questions.
    Hugs to you, and thank you for sharing your journey. Thank you so much.

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