Easter Sunday – 12 April 2020 – Day 18
It’s been a very different Easter weekend this year. Last night, as I stayed awake throughout the night watching over Mitchell, I struggled to make sense of what was happening, and I struggled to find the positives of the quiet time at 2 am in the morning. With only three of our carers still coming to work at home, we are needing to cover the night shifts over the weekend between us, and it just flattens me.
It flattens me, because I worry that this is what our future of having to care for the ‘adult’ Mitchell looks like should our funding for support workers change.
It flattens me, because in the daytime, I still need to run the house and care for our family while Phil still works.
It flattens me because it’s isolating and it is not the kind of ‘work’ I would choose.
It flattens me, because it upsets my circadian rhythms.
This pandemic has forced us to look at our own lives in many different ways and each individual, couple or family has most likely been experiencing their own set of difficulties and triumphs. For me, the past week has highlighted that my mental health deteriorates when I carry more of the ‘caring’ load without our many support workers who come into our home. I don’t want to be ‘that’ person that can’t cope, and it has taken me years to accept that I am not super woman, and that it is normal to feel like this when you parent a high needs child. But I did not reach that acceptance early, and when I feel judgement from others about what I may or may not be doing in my own home, it hurts. It makes me feel inadequate, selfish and ashamed. This judgement can come from our support workers , health professionals, friends or family, but most frequently it comes from inside my own head, and that is a big problem. I often have this little internal critic speaking to me , that says “why can’t you do it yourself?”, “why should you be tired?”, “you are not working, so why shouldn’t you do it?”. It’s an ugly conversation to have with yourself.
At times like this I just need to remember to give myself permission to be kind to myself and to remember that I must care for myself first, if I am going to be able to continue to care for my family. Research supports this. In a study about normalisation and family functioning in families with children who are technology dependent, the mother’s mental health state is a strong predictor of the families ability to normalize. (1) I didn’t really need research to tell me this, but reading this kind of study, helps me to acknowledge that these feelings are real. And that I am not alone. This is a huge topic and one of the reasons I would like to complete ‘that book’ one day.
- Boebel Toly, V., Musil, C.M., & Carl, J.C. (2010). Families with children who are technology dependent: Normalisation and family functioning. Western Journal of Nursing, 34(1), 52-71.
Easter Monday – 13 April 2020 – Day 19
This morning I got up at 7 am to farewell Elizabeth. Last night was her last shift with our family. She has been caring for Mitchell 1-2 nights per week for 8 years, so she is like a member of our family and one of the easiest and least judgemental carers we have employed through the years. At times, I have nick named her Pollyanna for her always positive and sunny disposition, but that is meant in a generous way, as she always arrives with a positive attitude. Elizabeth has certainly gone the extra mile for our family, she has picked up extra shifts when others called in sick, she has travelled into the hospital to care for Mitchell when he has been unwell – and if she doesn’t mind me saying it, all this in her 70s. Yes, Elizabeth has been our most mature caregiver to date, and with grandchildren of her own that she regularly spends time with, I think she has been super amazing to give so much time to our family over these years. I will miss her and as Mitchell looks forward to her every week, he will miss her too.
Not much else to be said about the day as we were on our own until Sherlie arrived at 7 pm. Georgia sent a text to say she was not well, so we have had to reduce to just us and Sherlie until she can return. What I have read so far during lockdown.
Tuesday 14 April 2020 – Day 20
Phil and I had a sit down Last night to come up with a manageable plan to take care of Mitchell with even less help. As we were already working Thursday to Saturday nights as those carers were off, he suggested we try to swap Sherlie from her nights to days for the week. This way we can get a rhythm between us for the nights. Sherlie said yes, so we have ended up with a new roster for this week. Sherlie doing 11 am to 10 pm, which means she can hopefully get Mitchell to sleep on Tuesday, Wednesday and Thursday, then Phil doing 10 pm to 5 am (while he does some work from home) and then me from 5 am to 11 am. We can only try. This way I get some quality morning time with Mitchell, but it’s not 12 hours of trying to keep him amused by myself (which is tough when you can’t drive or go anywhere), and Phil can still do a few hours in the day once he wakes up. Of course, now we have to take care that Phil doesn’t burn out. So I will report on how that goes soon.
Stay home and stay safe.