I have just come back from a walk, so what you say, it was on my own, me time!
I am two years off seventy and I am still wondering if I will have a life of my own. Why? because I am a carer, albeit a distance one now, so the label says! But I don’t regret it a bit except that I am so tired, so worried for the future, and have to say very occasionally feel like crawling into a dark corner going to sleep and never waking up.
I am mum to a wonderful young lady, my inspiration, and who I would do anything for, and just want to see her safe and secure for the rest of her life when I am unable to give that care and love that she needs.
I have spent this morning at a hospital appointment and there is another to attend on Wednesday. My daughter lives independently with care and support from a fantastic care provider who bends over backward to see she is well cared for but the hours she has are not enough to cover appointments, weekend support and most important emotional support.
But what terrifies me is the future when I or her dad are not around or unable anymore to help and care. I have asked this question but the authorities say “we will pick up the pieces when it happens!” Not good enough! My daughter has learning disabilities and is very vulnerable mentally, especially at the moment, and she is very aware that we are going to die sometime. Yes my son will look after her as her guardian but he has a family and to be honest like all the men in my family doesn’t do emotion. I am told I am too emotional and have learned not to cry in front of him, my daughter’s dad, and my husband. I have a place I go to either to shout, scream or cry.
But I suppose naively I thought as my daughter got older things would get easier. Maybe it is because I am older, I think it is getting harder. Even now I can go to appointments and the person we are with starts to talk to me, just because my daughter looks disabled they automatically think she doesn’t understand or cannot speak for herself. I then complain and I am labeled as a pushy awkward parent! A few years ago my daughter wanted to make a will and it was decided she would do her Power of Attorney, but the battle to get this done was hard, as every solicitor I spoke to said “Has she got the mental capacity?” to which I said “yes!!” but was then told she would have to have an independent assessment for this. I objected as I said she goes through enough bloody assessments so was turned down until my son suggested a solicitor he had heard of and it was fantastic! As we walked in my daughter went for a chat on her own and in five minutes I went in and we proceeded to get everything done, it was like a breath of fresh air. But then the ins and outs of leaving money in my own will was a nightmare too (another time!)
I could go on giving examples of what has happened over the last thirty years. We have been battling so much but I think what is my priority is seeing that my daughter’s future is that of one she wants and that she is looked after and cared for. Who is going to fight those battles for more hours when I am not here because she will need more? Who is going to be there in the evenings answering twenty-odd texts when she has had an anxious day? I have friends who are in similar situations and we all want answers, but I sadly don’t think they will come in my lifetime. I am working with her care provider to provide families with that emotional support and those we speak to (although every loved one who is being cared for is in different living situations) all want the same answers. There is a gap between families and carers that needs to be addressed, that is to bring the care provider on board to help with assessments so when a parent dies, another member of the family is then looking after their family member.
As I have said my daughter is my inspiration, I wouldn’t be writing this if she had not been born. We have written four books together, she is a National Special Olympics gold, silver, bronze medallist. She is a member of the People’s Parliament Worcestershire for disability. She leads a zoom helping people to sign and many other things. But she cannot do this without the right care and support. I wish I could say that we have had help all the way but no, far from it, and until now I have not had a lot of support myself. I liken myself to a battering ram, and my daughter tells me “Never Give Up Mum, You Can Do it!” it is what she tells young people when she gives talks.
But what has become obvious is the need for communication through all this, whether it is GP, hospitals, Social Services, Learning Disability Team, education, councils, or care providers, it’s COMMUNICATION! Going back over the years when it was decided that my daughter would benefit from attending a special school it took me a year of constant calls to both the education authorities and GP’s. Attending assessments and hospital appointments, those involved should never presume because someone looks different they are unable to communicate. My daughter, if she doesn’t understand will say so and ask me to explain. To have her looked at as if she isn’t there (and this does still happen) is distressing for both her and me! A few years ago my daughter needed eye surgery, it was delayed a couple of times, and then when I questioned the delay I was told that the delay was because information was needed from another hospital she was under, but because of confidentiality, no permission could be given. Why wasn’t I informed? When I questioned who would be there when I died and told that the social services would pick up pieces, who would be communicating with my family? The care provider my daughter had before the present one was a nightmare and during this period my daughter started to self-harm. No one had mentioned to me that we had the right to choose the provider when my daughter came back from college and decided to live on her own, we were just given the name of the organisation and that was that. Thank goodness when we were desperate I found out we could interview organisations, I could go on and on. It is understandable that families just give and get on as best as they can with looking after their loved ones, but this is not good as unfortunately when the inevitable happens we hear about very tragic happenings.
As you may have gathered I am very passionate about getting support for carers (whatever age) and their loved ones, we need to be heard as we as carers can see what lies ahead if something isn’t done! I am pleased that I am able to help my daughter’s care provider in this and they are beginning to make such a difference, and guess what the main thing that has come out of zoom meetings with parents? the importance of COMMUNICATION! After a couple of hiccups, my daughter’s care team and I have a really good relationship. I trust them and I hope they do me, they know they can call me anytime and visa versa. Most important my daughter trusts them and is now beginning to turn to them about worries, this is a big step and beginning to give me a little bit of peace of mind. One step at a time.
I will never stop caring for my daughter as long as I am able, I have said many times I will still be doing this up until I am taken away in my wooden box. I love seeing my daughter, would love time doing more things we want to do together. I would love to have more time for myself but like a lot of us I have other commitments as my husband has both mental and physical conditions, and I also have two wonderful grandsons who I adore. But whatever happens I will be there for my daughter as long as I able.
