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So here goes a life – mum, dad, myself, mental illness and forward we go in change

This post follows on from this one MUM – FROM SCHIZOPHRENIA TO DEMENTIA IN 60 YEARS (click the link to open it in a new window)

So, here goes a life, trashed from her twenties, double trashed from her eighties. Some would say it’s a great thing to

mum and dad June 2017 at the carvery enjoying a nice dessert, how quickly things can change

mum and dad June 2017 at the carvery enjoying a nice dessert, how quickly things can change

live until your eighties, but is it really, when you’ve been tormented by mental health issues all your life and then you go and get Vascular Dementia and all sorts of other ailments? I am not her, just her daughter, and I can only see it through my eyes, as she wouldn’t talk about mental illness when compos mentis, and now finds it difficult through her dementia. She cries and says she cannot look forward, and is basically depressed, talking about being ‘laid down’ to rest. I know she won’t live forever now, despite her good physical health throughout her life, because if the brain goes, the physical health goes with it, because of the lack of eating, and how everything slows down. So, tonight, I thought I might write about it. Perhaps cathartic for me, and useful or interesting for my readers. For I am one in millions who will go through this kind of situation in the world.

Mum went into a care home on Sunday, directly from hospital. Dad called 999 Wednesday when mum fell in the lounge in the early hours of the morning (the second of two falls in two weeks), and she went into A&E. Constipation and a UTI were diagnosed. She then went into a Day Assessment Unit for geriatrics, and was sent home without any acknowledgement of whether she ate, drank or went to the toilet, or any results from any tests they were supposed to have done. She hadn’t been eating and barely drinking. She came home and ate nothing for two days and nights, drinking just a tiny bit, no matter how much dad and I encouraged it. I said I would arrange for an intervention on Friday, but on Friday two women called on them from the hospital and said they would get her GP to visit her in her home. He didn’t come and in following it up I was told no-one had even requested it. So, Friday night, we called 111, very concerned about her lack of eating and complaints of stomach pain. They sent an ambulance and she went back to A&E, sending her home the next day saying she didn’t have constipation, was walking fine and eating and drinking. In the few hours she was home, she was screaming and shouting she didn’t want to be there and from pain. 111 sent another ambulance. From the hospital, this time, she was sent straight to a temporary care home, while we get funding for a permanent placement in a home. This process had already been started as dad finally had to say he couldn’t cope two weeks ago – sleepless nights, washing/dressing her, dealing with her mood changes 24/7, and abuse (although he had suffered that from her for 60 years) was taking its toll on him mentally and physically. He hung on as long as he could – amazingly. He’s had a triple heart bypass and has severe polyps himself, at 86 years old.

He was her carer of sorts all their marriage, due to her Schizophrenia, and inability to take responsibility for the household bills etc, albeit she went out every day on the bus to the local shopping centres, or on day trips in a coach. But the last two and half years he was her full-time carer, since she had a major fall down the stairs due to high levels of lithium in her blood which despite three visits to the doctor he failed to diagnose from her confusion and tremors. She was physically damaged, albeit she survived, with a diagnosis of vascular dementia on top. Dad has taken her out as much as he could to entertain her, and I took them out once a week. I also deal with everything other than her care; all the people, such as social workers, doctors, consultants, respite care homes etc. I am her spokesperson and look after her and dad’s welfare and support system. I do all the arguing, demanding and some appointment making. Social workers are stretched and it’s not all their fault, but crumbs, it has been a stressful two and half years, struggling to get what is required, and dignity for my parents. All whilst watching them struggle; mum with her mental health and realisation her brain and body is giving up on her (as her independence to go on buses and out on her own diminished), and dad with his health issues, and trying to care for his wife despite everything that came with that. Care workers came in to their home but mum hated it, so they just emptied her commode and left. They also came at such odd times, like at 6.30pm as a bed time call, it was ridiculous! A mental capacity test showed mum had lost capacity, deeming her in the hands of everyone else to make the ‘best decision’ on her behalf. Heart-breaking stuff.

We just managed to be together for Christmas 2017, mum, dad and I and although it wasn’t a happy one (never has been due to mum’s mental health and moods) I was glad to have it of course. I love and care for them.

Next is to try to get NHS Continuing Healthcare funding, which will be a struggle as they are already saying it’s not applicable, and to ensure mum is looked after where she is, and a permanent placement is found soon so she can settle into her new ‘home’ wherever it might be, as she is not settling in well where she is and is trying to escape and falling over. Very agitated and distressed and the care home cannot cope with her they say.

I’ve had issues with my dad, and, also my mum, with her mood swings all my life, but they are my family. My three brothers are not involved, apart from one who supports me and is very helpful with ideas and research and does visit mum and dad as he can. All three are busy with their own families/children; I am not, so I am in a very different position. And that’s another story altogether.

With all the struggles, I have thought about my future as an older person – something I rarely do as I am more a ‘live for today’ person – and it doesn’t fill me with joy, the idea of being old and possibly getting Dementia as well and ending up in a care home. I am not saying they are all bad, but we know it is the last innings of a life when they go into one. I have no children and will have no-one to look after me and my affairs when I am old if things stay the same, so all I can hope is that I don’t get into my mum’s situation and have no-one looking out for me, as I cannot rely on the system to do that for me. I wouldn’t trust them. I shall ensure I live my days out in my own home, wherever that is, and do not want to be washed and dressed by anyone else.

I am 44 now, and will do my best to live my life as full and as content as I can, doing things that make me smile daily, if I can. I have started doing holistic things like meditation and sound journeys and plan to ‘stroke my soul’ in 2018 so I can live as calmly as I can to the best of my ability. I plan to give out more kindness too.

I need to get used to the fact that mum is in a home and dad is at their home I’ve always known since I was one year old. I will have to learn to trust that mum will be taken care of and that I will do what I can for dad. To visit them in different places is going to be very strange indeed. A test, I feel, for my resilience, stamina, kindness and self-care.

Being a counsellor, I am used to helping others with their issues, and am getting fairly good at counselling myself. I also have some good friends.

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4 comments to So here goes a life – mum, dad, myself, mental illness and forward we go in change

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