I think that I was destined to be a Social Worker. I have always wanted to nurture and support people, especially my children and my family. The need to be needed is a strong motivator for me. It is difficult for me to be on the receiving end, especially when I feel unable to reciprocate and help those I love. Being the one being helped is a challenge. However, because of my natural propensity to want to be independent, it is a big deal if I actually ask for help. Therefore, if I ask for help and it is not given freely and willingly and with good grace, then I feel very hurt and struggle with it. If I ask for help and anyone seems to object or not have time to help me, I find that really hard.
I only ask for help, if I absolutely can’t do it for myself!
It frustrates me to ask for help and so if I ask and no-one offers, I get deeply offended.
The other side of this, is that if I want to try to do something myself, I really don’t like it when someone steps in and takes over or overly watches me. Recently, my husband and I were going for a drive and he reached over and let off the handbrake. I turned round and asked him what he was doing, and he replied that he was letting the handbrake off because I hadn’t done it. However, perhaps because of my slowed processing, I was just about to do it when he stepped in. I need to be given the opportunity to do it, before someone – with good intentions – steps in and takes over assuming that I have forgotten to take that handbrake off!
I know he is noticing that I am a bit more forgetful these days, but I think in the main it is not yet problematic. There was another incident yesterday where I accidentally set off the burglar alarm on our house just as I was about to put my car in the garage. I had to park the car and then leap out – as much as my gammy body allows me to leap – and turn the alarm off. Then sometime later, my husband came home and showed me that I had left the car running. I hadn’t been into the garage since the alarm and somehow, I had left it running. I felt really bad as he was quizzing me about how long I had left it running, what happened etc., and it got to the point where I had apologized and told him as best I could what had happened. He started to go round in circles asking me what happened, how long had it been running etc. I did my best and kept apologizing, but then I stopped and said to him “look you’ve shown me what I did, and I am sorry. But keeping on going on about it can’t undo what was done, it just makes me feel bad” He then responded with “Well, you are getting a bit forgetful lately”
Yes, I am forgetting things a bit more now. But I don’t want to be monitored, to feel like I am being watched or judged or both. It was a moment, in between the noise of the alarm and everything else going on and I know I won’t do it again.
Don’t get me wrong, my husband is a kind man and very supportive, but even he doesn’t get what it is to be me sometimes.
I know I have slowed processing
I know I don’t have the best memory.
I don’t think I am unsafe.
I don’t think I need to be monitored closely.
I need to celebrate what I can do. That is important to me. Sure, I have some memory and processing issues, but I am also still a good cook and have got back to doing much more in the kitchen and producing lovely meals. I know the not so positive things like memory etc,but be gentle with me. Tell me the positive things I can do and acknowledge them. Please don’t just point out the things I’m not doing as well as I used to.
I need positive feedback.
I need support not judgement.
I need patience not impatience.
I need to be loved, not checked up on.
I need time to act or react, don’t step in too soon!
I need to be recognized for the things I am doing well.
I need to be asked if I need help and not taken over.
I need encouragement.
I need love…
My journey with Parkinsons 