Dementia and ‘letting go’ #DAM2015 Day 23

On Day 23 of Dementia Awareness Month 2015, I wanted to post an old blog of mine, written a couple of years ago, seemed a good one to repost. Obviously many people who follow my blog now, were not doing so then and may not have ventured further than reading blogs from when they started following me. Sometimes I go back to old posts, and wonder who wrote them… Sometimes I think, what an odd thing to write, or how badly written it was, or even, sometimes, how what I wrote previously is still so relevant today. This particular one is still very relevant to my experience of living with dementia, and the ‘letting go’ that is required to get through my days.

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 being a 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 caused 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.

12 thoughts on “Dementia and ‘letting go’ #DAM2015 Day 23

  1. I can’t believe that I ended up on this blog post tonight. I’m in shock it was if you had wrote that you were rerunning it for me because I’ve only started reading your blog recently. I’m a blogger too at The Diary of an Alzheimer’s Caregiver and I take care of my mother who has dementia. She lives with my husband and I. This morning I walked into the living room and she was crying and it broke my heart. When I sat down beside her to see what was wrong I asked her if she was unhappy living with my husband and I. She gets bored easily. She said she loved it here, but she felt like she was such a burden to us. I just can’t make her understand that my life is so much better because she is here with me. I’ve been her caregiver for so many years but she was able to live on her own until 3 years ago. I have an ulcer because I worried myself sick about her being all alone in her apartment. Now I can go to sleep because I know she is safe with us. She has never been or will ever be a burden to me just like you are not to your husband. Is there nothing we can to take that feeling away because it really is just one more burden for us to worry about. We worry when you worry we worry when you worry. It’s an exhausting pattern

    • The challenge for us, is that we cannot always be rational about guilt or grief or in fact, anything else… but the feeling of being a burden, every time we need to ask for help, sits unkindly inside many of us at least while we have insight. The other thing for ma at least, that makes it harder to put in its rightful place, is reading the men blogs and comments written by many family care partners, about how tough it is as a care partner for their loved one, and often, how much of a burden we seem to be to so many… it is a vicious circle, and one that perhaps will never go away, I have no idea, and no clues on how to help assuage the feelings of burned and guilt.

      • I can only imagine how hard that would be. Here at my house we just don’t talk about it. Mom and I are very isolated because since I became disabled I can no longer drive. It devastates me to feel that she is unhappy in any way. I just want to have no worries bless you for what you are doing here.

      • We all have worries, and long before dementia, and of course how we manage the worry can effect our physical and emotional health. take care, and have lots of internet hugs and sending love from me xxx

  2. Even more powerful than it was two years ago (when I did not yet know of you!) Just re-watched Baz Lurhman’s movie “Moulin Rouge.” The message: “The greatest lesson you can learn is to be loved and to love in return.”

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