My husband was diagnosed with Progressive Supranuclear Palsy (PSP) in January 2013. He left earth the 26th of February 2016 aged 59.
On the 26th of September 2015 my husband responded badly to a prescribed medication. Though it was not an allergic reaction, it was immediate and I was really concerned. Within a week while in respite care, he lost his ability to walk, stand and his speech and swallow deteriorated. There were fall incidents. The medication was stopped after a few days but a threshold was crossed. Until that time we had quality of life with gradual decline of abilities, but no major disasters or falls.
I could not take him home from respite. I had already applied for home care package beforehand, but due to his age, cost, organisation, providers and lack of carers it did not materialize. He moved from ‘old age’ to ‘disabled’ and back again, he did not fit either box exactly.
This all led to complications and general unhappiness: we both wanted to be home, the nursing home was challenged with an immobile patient in a mobile ward, and the HSE had difficulties finding funding and the right care. The intensive care that was suddenly needed led to further complications and infections, leaving my husband in a critical condition. Eventually he was brought to hospital where he remained critical for quite some time. Throughout this I was struggling to get a home care package, trying to work, and to build a disabled-friendly extension. I travelled much to be with him every day.
In the meantime my husband fought a hard battle, lost ˃20% of his body weight, was given a catheter and then a peg tube. Eventually I got him home before the New Year started with a poor prognosis….
We were very happy to be home, and my husband improved daily on all levels, but the catheter and his immobility had taken its toll and brought challenges. Ultimately those brought further complications which were final.
I feel strongly that with a home care package in place sooner, we would have had more time together, avoiding some complications.
The home care package worked for us though the situation remained challenging. There was good contact with the HSE, with evaluation of services. All in all it was a pleasure to have the HSE carers at home, and my husband always smiled when he saw them. Privately I hired extra care to cope with the high demands of caring for a person with PSP.
I was not able to work, but they were very understanding though I was forced to further reduce my working hours, anticipating complete abandonment of work.
I feel strongly that we needed palliative care at home. I tried on all levels to get access, but it was repeatedly declined. My husband was pretty unable to talk thus we had to glean from his limited body language what he felt, but it was clear that he had bouts of pain. Those were always linked to his catheter.
Though the catheter had its function, the problems related to that were huge, and thus either more flushing care, discussion about right size catheter, internal or external or bladder tube, latex allergy should all have been taken on board. I feel here is a real issue for further research getting catheters to work properly. The waiting time for flushing instructions also was simply too long and never materialized.
My husband was completely dependent on peg feeding, and thus the feedback with a dietician at home would have been important. After all diet is closely linked to bowel movements, and bladder function, and I feel more attention at that level was needed including home visits. Currently dieticians cannot do home visits.
Physiotherapy only came on board the last week. It would have been great to have had more physiotherapy during all phases of his illness, to keep mobility and also to keep muscles active at the stage when he could not stand anymore. He played football the days before his medication! He also had regular massages beforehand. This helped easing his discomfort, but only limited massages were possible in the nursing home and in the changed home situation.
All in all, in his final stage dementia was hardly an issue, but the physical challenges certainly were. My husband was alert and knew what was going on, it was up to me to understand his non-verbal messages. There were no behavioural issues, he was really engaging with everyone around him, and very happy with his visitors and helpers. He only responded when things were wrong or painful.
We had a tough life for at least 3.5 years, but also a very valuable life. We made many new friends and saw new activities, and took everything on board that was suggested to us. We had complete attention for each other, and that time is invaluable.
There are always lessons to be learned. Nevertheless, I personally have no regrets and am very grateful for the path we went together, and the help we received to enable us to stay on the path.
Dr Ingelise Stuijts and Dhyan Pavitro