The Day the Music Died

I overheard a conversation recently where a lady was questioned as to why her husband was in a care home. The husband apparently, seemed to be in good form.

It is my belief that women as a rule make very good Carers but I am afraid that many men do not. I do not know personally of one instance where a woman has walked away from her responsibility as the Carer to her husband or partner, but I do know of several cases where a guy has completely shirked all responsibility.

Unless one has been a Carer, it is difficult for one to understand what it takes to be a Carer.

I became a Carer when my first wife Patricia became ill. It was fortunate for her that I had been a “Carer” before. As a very young boy, I was often in the position of looking after my 3 younger step brothers and helping look after my sick mother. By the age of 14, I could do the washing, the cleaning, the ironing – I could also cook a mean roast with 3 veg and Yorkshire pudding.

There was no way I was going to walk out on Patricia, although I have to admit that there were times when I was severely tested. She was originally diagnosed with Parkinson’s Disease which although it was a shock to us, we felt that with proper medication and support, she would lead a fairly normal life for many years to come.

But it was a real shock to us when the diagnosis was changed to Multiple System Atrophy (MSA), a disease we had no knowledge of. We hadn’t even heard of it before. We surfed the Internet and researched MSA. What we found can only be described as sad but it gave us a foundation to work from.

It was nearly 13 years from the time we first realised that something was wrong with Patricia till the day she died. 13 years is a long time.

Initially she led a normal life but it wasn’t long before she began to struggle with normal activities. I was fortunate that volunteers from the local parish church offered to help us. They would take Patricia shopping, to the doctor, to the Neurologist, to the local Parkinson’s support group. But the disease was continuing at a relentless pace. And yet as her illness progressed, these volunteers continued to support her and to become very good Carers. They stayed with her till the very end.

As her illness progressed, I needed to make certain decisions. One day, I sat down with Patricia and we discussed – “where do we go from here?”. I promised her that I would do all I could to keep her at home and to provide her with the care and support that she deserved. I would not put her into a nursing home unless there was no other option. I reiterated an earlier promise that I would always engage her in any discussion on her future. But I said that I could not predict what would happen to me, or how my role as a Carer would affect me. If something happened to me, I said, she would end up in care – somewhere, and most likely, not the right place. So I put it to her that if the situation arose where we disagreed, then I had the casting vote.

She said that she understood and agreed totally.

As her illness deteriorated and the caring became more onerous, I relied more and more on the volunteer Carers. I also employed a live-in housekeeper cum Carer plus I also paid a couple of qualified health professionals to help part time with Patricia each week. Every few months she would go into a nursing home for a 2 week stay while I had a respite care break. St Joseph’s Towers in Kew (now closed sadly) was the only nursing home that I did not remove Patricia from before the two weeks were up.

The volunteers – God bless them – not only visited Patricia at home but also visited her when she went into respite care. It got to the point that I was expecting the phone call a few days into the respite care break telling me that Patricia was not being properly cared for. This would result in me terminating my break and taking her back home where she got the care she both needed and deserved.

There was one instance when I complained to the relevant State Government Department about Patricia’s stay at a supposedly highly rated nursing home. Two young public servants made an appointment to meet with me at our home and attempted to discuss my complaint – they failed miserably but did suggest that – in response to my comment that nursing home staff did not understand illnesses such as MSA – that I should visit said nursing home and give them an insight into this illness.

My response was that that it wasn’t my job to do that and I had my time cut out looking after Patricia.

Eventually she was accepted into the Bethlehem Hospital care program. Bethlehem Hospital, to my knowledge, is the only facility in the country that offers an acceptable care service for people with neurological illnesses.

It is also my belief that there is no facility in the country that can offer people with a neurological disorder the level of care that they deserve. Bethlehem Hospital comes closest to my perceived level of care.

Whenever Patricia went into Bethlehem Hospital for respite care breaks, the volunteer Carers again continued to visit her. I never received phone calls telling me she was not being properly cared for.

As an aside – I don’t think any patients in Bethlehem Hospital even came close to receiving the number of visitors that Patricia did.

As well as respite care breaks, the hospital offered many other essential services.

The day came when I arrived to take Patricia home after a respite care break. I was taken aside by hospital management and told that they believed that I could no longer provide Patricia with the level of care that she needed and that they were recommending that she stay there permanently.

My initial reaction was negative. It was my belief that I was providing Patricia with the best possible care at home. But – I was cognisant that my live-in housekeeper cum Carer plus many of the volunteer Carers had been gently suggesting to me that the time had come to let go. They felt – God bless them – that the burden of caring was having too much of an effect on me.

It was with a very heavy heart that I agreed with the hospital.

I asked to be allowed to tell Patricia myself and they wheeled her bed into an empty room where we could be alone. I knew how much Patricia enjoyed the visits from the music therapist so I arranged for the music therapist to be available outside the room while I said what I had to say.

I will never forget that day. I told her that I still loved her but the time had come for her to remain in Bethlehem Hospital – that this was the advice of the hospital staff and was supported by many of the volunteers.

By this stage in her illness, she couldn’t talk. But this day, she showed that she hadn’t lost it all. She howled out loud like I had never heard her howl before. In retrospect, she was grieving that she would not see her lovely home again. She howled and she howled and I could not stop her. The door opened and the music therapist came in and took over. I left the room and the hospital immediately. I was shattered.

The next day when I went to visit Patricia, I was taken aside and told that the senior staff – the neurologist et al, had spent time with Patricia that morning and reported back that she was very calm and receptive to her situation. And I found that to be the case.

I am certain that when Patricia was taken in as a permanent patient, that the staff anticipated her life expectancy was probably around three months. They didn’t know the lady because she survived for another 15 months before she finally went to her Maker.

But the day I told her she would not be going home again – was the day that the music died for me.

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