Hello

Calon Lan

Registered User
May 21, 2024
20
0
Hi everyone, I have been reading posts on this forum for a few years but I have finally decided to register and add my first post.

I have been primary carer for my 90 year old mum for just over four years. She was diagnosed with mixed Alzheimer’s and vascular dementia in 2019, but had signs and symptoms for at least a year before her diagnosis.

My mum first moved into residential care in February 2023. The “care” in the first home she lived in was catastrophically bad. She was there for about two months. She had a series of serious health issues. There was appalling hygiene, dangerous broken furniture, dogs owned by the registered manager urinating in corridors in the dementia unit - I could go on. A violent resident was locked into a section of the unit for nearly two weeks. The staff just seem to have let a bad situation escalate until it became unmanageable. During the last week she was a resident my mum was lying in bed with an undiagnosed fractured hip, with virtually no care or support from staff. I know, because I was there. A nurse from the local health centre who examined my mum failed to suspect a hip fracture. A GP didn’t visit to examine my mum for four days - despite the fact my mum could not walk and was in constant pain. When an ambulance was at last called the crew arrived and diagnosed a probable hip fracture in minutes. My mum was taken to hospital and had hip replacement surgery the following day. She had a three week stay in hospital. I refused to consent to discharge from hospital back to the same care home. A place was found for my mum at a different care home, actually a nursing home. That is where she now lives. This home has problems, but it certainly does not have the deeply embedded institutional neglect I witnessed at the first care home.

I visit my mum at the nursing home every day. While my visits are of benefit I will continue to try and support her. Some days are ok, some are very, very bad. Sadly the very bad days are becoming more frequent - and I know the downward spiral will continue. Thankfully there are still moments when my mum is happy and I treasure those.

At present I am dealing with life one day at a time, often literally one minute at a time when I visit my mum at the nursing home. Her state of mind can flip from ok to deep despair and frustration in seconds. There are no obvious triggers - I think it’s just a manifestation of a complete failure of her short term memory and her confusion. I feel broken beyond repair, yet somehow I continue doing what I can to support my mum. I no longer think in terms of a recovery of my old self of four years ago. That person is long gone.

The story of the past four years is a long and very distressing one. That’s possibly for another day and another thread.
 

SAP

Registered User
Feb 18, 2017
1,533
0
Hello @Calon Lan , you and your mum certainly have had a difficult time. The first care home sounds truly awful and I’m sorry you have had to go through that experience on top of all that is part of the dementia journey.
It’s good that you visit you mum often but at some point you might need to think about how this is affecting both of you. Do you think you could allow your self a short break to recharge your batteries. I have read on here that dementia is a marathon not a sprint and you may have quite a few more years ahead of you. It sounds like you are already at burn out stage from what you have said.
I sough out counselling last year as I had nothing to offer anyone. It really helped and it sounds like you have a story to tell.
We are all here to listen.
 

Calon Lan

Registered User
May 21, 2024
20
0
Hello @Calon Lan , you and your mum certainly have had a difficult time. The first care home sounds truly awful and I’m sorry you have had to go through that experience on top of all that is part of the dementia journey.
It’s good that you visit you mum often but at some point you might need to think about how this is affecting both of you. Do you think you could allow your self a short break to recharge your batteries. I have read on here that dementia is a marathon not a sprint and you may have quite a few more years ahead of you. It sounds like you are already at burn out stage from what you have said.
I sough out counselling last year as I had nothing to offer anyone. It really helped and it sounds like you have a story to tell.
We are all here to listen.
Hello SAP,

Thanks for your message. You are right that I am burnt out - or at least very, very tired. It’s a mental exhaustion unlike anything else I have experienced.

My mum is extremely dependant on me. This is partly due to our relationship over many years since my father died very suddenly in 1987. It’s also due to the 24/7 care I provided at her house for nearly three years before she moved into residential care in February 2023.

My visits to be with my mum at the nursing home are very beneficial for her. While that remains true I will do my best to continue. The staff at the nursing home work very hard and they do their best to look after my mum, but realistically they cannot provide the psychological support that I can provide. They simply don’t have the time, the right skills or the same personal relationship with my mum.

I often arrive at the nursing home and find my mum very distressed. I know that isn’t anyone’s fault. At present I can often alleviate her distress and misery, though it is sometimes very difficult. I know that the situation will certainly change as my mum’s illness advances. At some point I won’t be able to have the same positive effect as I can now. We haven’t reached that point yet, but I feel it isn’t far in the future. If my visits cease to be helpful then I will step back and move into the next phase of my support role.

I know there are probably more difficult times ahead. That’s one reason I have connected with this forum now. It is time for me to seek more support. I have considered counselling as you suggest. I know I am very damaged at present and it’s possible a good counsellor could help me come to terms with the trauma of the past few years.

I use writing as a form of personal therapy. I’m likely to use this forum as an outlet to help manage stress. I know it’s also a place to connect with people who understand dementia care. Most people have no idea, and in my experience that includes many in social services and many healthcare professionals. This website has already helped me in so many ways since I found it way back in the spring of 2020. If I can give something back to others then I hope I can do that.

As you say, it’s a marathon not a sprint - and there’s possibly a long way still to run.
 

SAP

Registered User
Feb 18, 2017
1,533
0
Well if writing helps then put it all down, anything that gets you through the day.