Geoff and I have been on this PSP journey for over 5 years now, albeit with an initial diagnosis of FTD.
We have had live in care since September last year and more recently this was increased to full time live in care.
We have had, to date, 9 live in carers in our home.
The care industry, in my opinion, is not necessarily about the desire to care, but in my experience when dealing with agencies and individual carers, it is more about money for the proprietors and a place to live for the carers.
Yes, we have had a couple of good carers and in particular one, who was outstanding. We were so sad when this 37 year old man told us he was moving to Germany to start a new career (3 times the pay) with his partner. We have also had some appalling carers and believe me, I have not tolerated this but this has led to increased stress and an attitude from the managers because I have dared to challenge in order to ensure my husband gets the care he deserves.
Physically and mentally I simply can no longer care for Geoff on my own.
The final straw was a carer who was impossible, he kept live worms in his room, brought algae from the dykes home in a plastic bag and did not think there was any hygiene issues with this. However, more importantly he was not medicating my husband properly, ignoring the dosages, did not provide adequate personal care and was constantly challenging me when I was trying to point the issues out to him. He is now subject of a serious safeguarding investigation.
My mental health has suffered due to the abuses of trust (not all covered here) that this carer inflicted upon us and under the guidance of our GP, so that I can rest and recover, Geoff is in a nursing home for respite.
I am now in the worst dilemma of my life, in so much as I now have to decide what is best for both of us.
Do I keep Geoff in the nursing home? Just around the corner from where we live, which means I can visit every day (which I have been doing). Or do I bring him home, where I will care for him with the help of more unknown, untried carers? Risking more stress and upset as I have now lost all faith in this care industry.
Geoff still has a level of capacity and we love each other, anyone who knows us will not doubt this fact. But I don't know what to do.
I need advice and guidance from you guys who might understand how difficult and painful all of this is. I simply do not know which option is for the best for either of us.
I would appreciate your honest advice.