I too, along with my sister, feel the massive weight of guilt and emotional turmoil about my mum being in a care home. Thank you to everyone who has responded to
@Jessie5. You have helped me as well.
Until seven weeks ago I was caring for my elderly mum at home. She has significant long-term physical ailments and was diagnosed with mixed dementia earlier in the year. She lives with me and things were ticking over, but becoming more challenging with every day. She refused outside help and my role was becoming a 24 hour commitment.
She was admitted to hospital in May for a physical condition. She was kept for five weeks. She has always hated hospitals and has fortunately avoided them for most of her life. She thought she had been kidnapped and could not understand what she had done wrong to be put into such a place. The hospital did a great job with her physical issues but her state-of-mind deteriorated rapidly, not helped by her having no mental stimulation at all and the refusal of the hospital to allow any more than a one hour visit a day. A request to the ward sister that mum should see a dementia nurse was met with amazement and we were told that this would only be possible if mum was violent.
When mum was ready for discharge, still with significant long-term medical issues, I was asked what we, the family, wanted to do. By this time, mum was unable to understand what was going on. I asked for at-home 24/7 care, knowing that this was out of the question, and was told that this was out of the question! Why ask what patients and families want? Experts will not give advice through fear of litigation, it seems.
The actual result was that mum was discharged to a nursing home under the NHS covid-funding “bed to assess” arrangements. The home is fine and mum is well cared for, clean and well dressed, good food and, after a horrendous quarantine period, able to sit in the lounge with others. She has, though, been very agitated and during video calls asks repeatedly to come home. What she says is true. It is her home. She made the home what it is. All her things are there. Owing to positive covid tests, physical visits to the home have not been allowed. We tried the “essential carer” argument but were met with a negative response.
The last seven weeks have been the most horrendous experience.
Mum has now been assessed by social services and it is generally agreed that she needs a nursing home with dementia support. The home she was placed in have brilliant nurses but do not have the resources or trained dementia personnel to cope with her increasingly erratic behaviour. It is evident that they are not familiar with the best techniques to communicate with a dementia patient. Basic things like not contradicting them, not telling them they are being rude and not lying to them. The placement was done on the basis of her many physical ailments alone and clearly a dementia diagnosis on the discharge summary was considered an insignificant issue. She was taken in by the home, who happily accepted my mum, and the covid-funding, willingly. They fully admitted, from day one, that they would not be able to manage anyone who wandered or was challenging.
We are now faced with the prospect of mum being moved, again, to a home that can accommodate her. This will be another hammer blow to her and us.
The family dilemma is: do we bring her home, as she wishes and can reason why when she is lucid or do we follow professional advice and go along with the move? My heart wants to whisk her up in my arms and return her to safe and familiar territory, her long-term home. The thought of mum never stepping into her home again is unbearable and heart-breaking.
I think the advice given to
@Jessie5 and the experience of others would suggest that I should follow my head, not my heart, as difficult as it is. A nursing home with dementia support is best. The emotional toll of making a decision where no one is a winner is awful, horrible, all consuming and just feels paralysing.
I know I am not alone and many of us suffer the guilt, anguish, sleepless nights, and sense of failure when our most loved ones need us the most.