My mother has deteriorated since a major stroke some three years ago. In January 2023 she was admitted to hospital with Encephalitis (swelling of the brain). After 5 weeks of treatment she was placed into palliative care and we said our goodbyes. Seeing as she had been showing clear signs of vascular dementia after her stroke, my father and I were upset but relieved that her suffering had come to an end. Yet it didn’t and she survived to become severely disabled, afraid and confused. We coped the best we could and brought her home.
Three weeks ago she was re-admitted to hospital with Status Epilepticus (constant seizures that didn’t stop for three days) and further damage has been done to her brain. She is now in a community hospital where they’re attempting to rehabilitate her physically so she may return home. Yet the woman we will bring home is not my mother. She’s lovely but her personality has left entirely. She has trouble following any conversation longer than a few minutes and therefore is isolated and suffering. This, in turn, breaks my father’s heart and I get to watch it over and over again. He’s now losing weight and showing signs of significant stress. I do all I can from cooking meals, keeping him company, deep cleaning the house to ease his burden to talking everything over with him. I have no siblings and this is all beginning to make me rather depressed. The seemingly endless suffering of my parents, the only consistent thread of my life, is breaking me and I feel helpless.
Hi @Jacky1 I’m sorry to hear about your Mum’s health and the distress you and your Father are experiencing. My Dad had vascular dementia (& other health issues over the years leading up to his diagnosis) and in the end my Mum couldn’t look after him and he went into a dementia care home. Within a few weeks he was unrecognisable as my Dad and it was like suffering a bereavement but the body was still there moving & breathing. My Mum suffered a lot of guilt about placing Dad in a home, but it was the only sensible decision to protect her own health. Have you had a chat with your GP about getting some practical support to help you and your Father when your Mother comes home? Also, might it help to talk over your concerns with a counsellor to see if there is a way to stop you feeling depressed? Before Dad went into a home we were able to get carers to come and sit with him for a couple of hours so at least Mum could get out of the house. This helped her mental wellbeing a bit. Could this be an option for you? Dementia is a horrible disease, vascular dementia in particular is distressing for the family of the sufferer. I hope you can find some support and there are a lot of people on this forum who have had similar experiences to the rest of us and they offer some good advice. Best Wishes.
@JustSomeBloke thank you for your reply. The intricacies of my family dynamic mean that my father will try to cope alone, without professional help. It has taken the Encephalitis episode for my parents to even accept my help. They have been together for 50 years and have always been very insular. My father was in the military until I left home at 18 so we’re all rather pragmatic people yet my parents have a blind spot when it comes to their relationship. My mother was emotionally and mentally abusive and this has prompted me to seek professional help before. I am aware that my feelings are not facts but as a result of the complex trauma I endured throughout my entire childhood I have a highly attuned sense of empathy, in short it metaphorically crucifies me to see suffering in others. It feels as if it is mine. I know that it is not and I consistently use the exercises I have learned to cope. Yet right now it all seems so futile. No matter what I do or how I reframe this, it seriously hurts. Perhaps it is because it’s my parents. Perhaps I’m not a ‘well’ as I think I am. I just don’t know anymore.
@jacky1 Thanks for your reply. I hope you are able to get some support from people/organisations that you feel comfortable talking to and trusting to have your back. You shouldn’t have to suffer alone. Take care.
Ahh Flower I am so moved to hear the situation you are all in. Thank you for reaching out. I don’t know what to say to comfort you but I send you love. 