I LOVE MY husband to bits. He has the most beautiful blue eyes and when he remembers to smile, they twinkle like stars.
He is able to appreciate traditional music, feed himself and sometimes speak. He enjoys company to a limited extent. I think it is very unfair to describe him by what he can’t do but for the purposes of this article we have to understand his limitations.
Philip’s condition
Philip has a rare neurological disease that affects his movement. It particularly affects his legs and he has dementia. He is in a wheelchair. He has to be hoisted if I need to move him and he is incontinent.
All of his food has to be blended and his drinks have to be thickened. He can generally let his needs be known by facial expressions or gestures, although he can’t identify the source of any pain. He is totally dependent on me for everything.
The simplified life
I don’t have enough energy to waste time so I have developed a mantra: simplify, simplify, simplify. This is where creativity and inquisitiveness come into play. If a problem occurs I need to try to think outside the box if something isn’t working for me or Philip.
For example it is difficult to pull a winter coat on Philip in the wheelchair. What could make it simpler? A warm cape without sleeves. Or sometimes Philip is unable to speak so I try asking him to blink for “yes”.
If I don’t understand something I am always wondering aloud to the doctors, therapists and nurses. I ask loads of questions.
To create an environment that is constant, comforting and safe for Philip I need to be well-organised. The steady pile of clothes have to be washed and dried everyday. The tablets have to be ready and crushed. The meals have to be cooked and liquidised and served at the same time. The pads have to be changed at regular intervals.
Carers need bucketloads of resilience
Next comes resilience. It is defined by the Oxford dictionary as: “the capacity to recover quickly from difficulties; toughness.” I need it in bucketfuls.
There are so many emotions swirling around in my head. The dominant one is a deep sadness that I have never, ever experienced before in my life.
I work hard at trying to remember what my husband was like before he became sick and it becomes harder as each day passes. The sadness can become overwhelming at times but a good cry usually helps until the next time.
I have found that caring for him has made all of my insecurities come to the surface. They annoy me and upset me but I am forced to deal with them as well.
Caring is hard
There is no getting away from the fact that caring is hard work. I have to grab any little space I can to do a few simple things for myself such as go for a walk or read a book – my two favourite things.
Christmas for us is no different to any other day, except that we are blessed to be able to go to be with our son and his family for a few hours. This is something we both thoroughly enjoy and appreciate.
I can say that it is my choice to care for my husband. For many people this is not a choice and they are expected to do it anyway, often with disastrous results for them.
The government needs to recognise carers as a disadvantaged group of people who have legal rights, protections and supports. Unfortunately this doesn’t seem to be on their agenda.
Annie McGuinness is a full-time carer for her dear husband, Philip. The Alzheimer Society’s helpline 1800 341 341 or see www.alzheimer.ie; Family Carers Ireland’s cCareline is 1800 24 07 24 or see www.familycarers.ie.
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