I love my house, okay it has a few holes in the wall where one of my sons became angry and raged at the world but we live at the foot of the Glennifer Braes and have the best back garden in the world. Today sees the commencement of Carer’s Week. For the past few years I have made a point of blogging and speaking about my life. Sadly this year little seems to have improved. My own caring role seems overwhelming at times as I care for my two sons who both have autism and rare genetic disorders and my Mum In Law who has alzheimers. Those who know me know I am a positive person and I love my family and believe in the goodness of people in general. That is why I do what I do. I love to see my family thrive and respect their wishes.

So why did I mention my house? In the hall there is a table a dining table. Recently though I have found myself not having enough time in the day and leaving clean clothes on it. Every time I pass it it serves as a reminder that I have very little time to put these clothes away. It is my collective guilt, a metaphor of the many tasks I feel permeate my time time for being Sandra which I seem to have less and less off. Taking friends advice I spend a short time every day to get rid of the pile but I feel thatthis is my lot at the moment,being  an object where more than I can cope with is given to me.

Like many carers I care for more than one person. My sons and now quite recently my Mother In Law. One of my sons has quite complex physical needs as well as his autism and I have had to make the decision just to help MIL as much as I can. I used to think autism was challenging and it is but watching my MIL swim away from the shore because of her alzheimers is cruel. She had a bad fall and spent 10 days in hospital recently. The NHS say they will listen to carers but an example of how this is not happening was on her discharge. Those of us who are frequent flyers in the NHS know how appropriate the term patient is. If someone is fit for discharge our local hospital sends them to the Departure Lounge (very soylent green) to wait for transport. As my MIL has steep stairs to her home we requested an ambulance and asked once she was going to the lounge that they could phone me and I would wait for her to take her home. In the afternoon I got a phone call from the ward to say she was on her way home. This is a woman in her eighties with alzheimers and they had not noted my request. I am grateful for our NHS and know the ward was under pressure, but please listen.

She was discharged with a “full care” package with carers visiting four times a day. Her son and I felt relief. We are not together any more but I still care for his mum. Last Friday the care package was dropped to twice a day. The carers are lovely but their manager explainded they cannot do welfare checks just provide personal care. This does not include meal preparation or supervision. Due to the alzheimers she cannot prepare a meal and needs someone to supervise her so she doesn’t choke. The care co-ordinator explained that they were short staffed and could not provide this it is up to the family. This is due to lack of staff. Forgive me if I sound silly but I assumed helping someone eat was basic care?

Nan’s illness can cause her to be confused, and verbally aggressive. “I am Lady MacBeth” she said to nurses who she refused to allow to see a sore. She dislikes strangers and what she sees as the intrusion of carers. She can manage herself though she cannot. Since her discharge she has had breathlessness and chest pains. Her GP visited last week and found she had fluid on her lungs. Her heart was not checked during her hospital stay and she has an appointment to see a cardiologist next week. She has a spray which carers can only advise her to take if she has symptoms. Honest you could tmake it up.

I remind myself when she makes comments such as “You mean nothing to me” this is just the illness speaking. I am well trained in the bluntness of autism speak and how to have conversations about manga, superheroes, the marvel universe, Trump and live in general. In a past life I worked as a carer and loved it But I had time off, paid holidays and wonderful colleagues. I still have loads of friends many who live with disability and who are carers. Thank Heavens for social media and being able to chat. I feel guilty I can’t see people in real life often enough.

In this year’s Carer’s Week the theme is the many carers who are unwell themselves and do not have time to look after themselves. I wish the NHS could prescribe time in a bottle alas unless you like science fiction computer says No. I am mindful of many of my friends and myself who live with long term conditions which are exacerbated by our caring roles. I know carers whose loved ones have died who still feel the impact of their caring role. For some it is like post traumatic stress.

So here we go again another Carers Week. I hope the government will listen to us cuts to services are having a huge impact. The powers that be though know that we won’t take action as we do what we do with love and compassion in our hearts. We make the world a better place and reflect the moral compass of any society and how the most vulnerable should be allowed to live life life to the full. I urge those who represent us to not to pat us on the head and sat well done, thanks for contributing care equal to that provided by the NHS. What would happen if we stopped doing what we do. Please stand up for us and campaign about the cuts which mean essential services such as respite are no longer available. One of my sons respite was cancelled this year by a third sector organization and we still feel the impact.

Help us to help our loved ones live a full life but also help us have a life. This week using the hashtag #RealCarersWeek some folk will tweet about the reality of their lives if we have time. This is the reality. Can we change the system please? celebrate good practice and not preach about how about how better off we are. I would like to invite any politician to come and spend a few hours with me. Forget buzzword bingo and outcomes and see the realities of our lives. Sending much Love to thos I know in real life and on here. Let’s share the megaphone this week and give a glimpse into our lives and let’s continue to make society a better placeWell since I have been up since 5am I wrote this. Take Care and see you on the other side.Love to you all. xxx




About sandrassp

I am the mum to two sons who both live with autism. I give glimpses into my life. All views are my own
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