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.
In 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.