Being kind to someone you love and care for isn't a hard thing to do, but when you are supporting someone with dementia, sometimes, it just becomes overwhelming.
We see my 91-year old mum who has Alzheimer's dementia, three times a week.
On the weekends, we pick her up on Saturday afternoon at 4:30, bring her over to our place to stay the night, and drop her back home Sunday night.
It's a lovely time most often - but the truth is, sometimes it's really just not that easy.
Sometimes it's hard to answer the same question over and over - all day.
Sometimes It's hard to live with the constant concern that she's in the same clothes that we saw her in at the beginning of the week.
Sometimes it's hard to bite my tongue when I know she hasn't washed her hair.
Sometimes, the truth is that I get sick of having to act like the parent of a 3 year old when I don't have a 3 year old.
Wake Up Call
This last weekend I had a little wake up call - one that reminded me how special it is to still HAVE my mother with me, and how little the effort on my part to make sure that our time together is as good as it can be.
When I went to pick her up at 4:30 last Saturday, she came to the car without her overnight bag.
I assumed she had just forgotten it, but when I asked where it was, she said: "I'm not going to stay the night."
I could see that she was upset, and when I asked her why, she answered: "I don't want to stay the night."
When I pressed her further, she said "I just don't feel that I'm welcome. I don't like being dependent, and I just don't feel welcome."
I was shocked and saddened that I had made her feel that way - I felt I had broken her heart with my selfishness and intolerance.
And there is no doubt in my mind that it was my actions from the previous week that made her feel that way.
Certainly, her dementia is having an effect on her feelings and how she is generally, and it would be easy to write this off as part of her "condition".
The unadulterated truth though, is that the last couple of times I have seen my mum, I have felt frustrated and annoyed that so much of my life is taken up with one thing or another to do with managing someone else's life, when in truth, I have enough on my plate managing my own life.
The fact that it's my own mother just adds another layer of emotion to the whole picture, and feelings of responsibility.
So I hugged her. I told her she was TOTALLY wrong and that she is ALWAYS welcome with us, no matter what - and that is the truth.
But I hurt her, and I am not proud of myself.
As a primary Carer, I "get" that I need to make sure I have down time.
And I "get" that my behaviour was an act of self-preservation in what is a very complex emotional landscape.
I also "get" these three lessons.
Lesson One: People will forget what you say, but they will never forget how you made them feel. And clearly, even when the brain is undergoing the constant and significant changes that come with dementia, this still holds true.
Lesson Two: The only person I can change is me since my mother CANNOT.
Therefore I must - if I am to ensure her life is as good as it can be, and in turn, I feel I have done the very best I can to make that happen - adjust my own thoughts and actions.
Lesson Three: Make sure I slot in some "me" time.
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Read about MemBo Noticeboard
As a result of helping my mother, we have created an online Noticeboard system, that enables Family & Carers to update appointment and other important information, and display it immediately on a Tablet placed in the home of the person with memory loss.
MemBo Noticeboard helps people with memory loss to live with greater independence, and reduces feelings of distress and confusion.
If you would like more information, please email us at info@membonoticeboard or visit https://www.membonoticeboard.com/