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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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Solving the climate crisis and emissions is really about making the majority reduce their consumption through using less or paying more taxes so the elite can carry on as normal. If the govt or the world as a whole were serious then we would each have a carbon allowance, but how would that work, far easier to tax the lower income people on fuel for their cars,houses etc than ask the wealthy to stop flying private jets, driving cars that do 20mpg and leave a carbon footprint that’s massive compared to ordinary people.
If the ordinary car is such a threat, why are people being asked to go electric when to do so would either bankrupt them or mean they simply couldn’t afford a car. Its simply not going to happen unless somebody is making a fortune out of it.
@Rex Tilson: absolutely. A survey in the U.K. found that the top 15% of flyers took 70% of flights in that year (2014). Their Carbon costs are even higher because the top 15% fly more long haul and private jets. 50% of people didn’t fly that year but they did fly every second or third year.
Increasing carbon taxes would have little effect in any one year as it would penalise the people taking only 30% of the flights. Most of top 15% are rich enough to continue flying.
A voucher allowing one short haul return per person would massively reduce those flights while not affecting the bottom 85% of flyers who take one or none every year. Maybe corporations can have a few more vouchers. Otherwise – zoom.
At the very least we should ban private jets – are we all in this together or not.
There are chasms between Government words/plans and their actual actions, from health, education, infrastructure, etc decades of incompetence and cronyism.
The climate change advisory council?? Money for old rope for sure isn’t it. Anyway we the people soldier on. Chin up folks.
What’s telling for me, is the amount of rubish that comes outta the journal and all the other outlets singing from the same script. Money most be worth it, won’t last long.
Blah blah blah is right…..Go talk to the Chinese & American’s first
@Christopher Byrne: yep, and then we’ll be fed the same BS that the smallest countries must lead by example first.
according to the ESB data centres use 1/3 of the grids capacity. we bow to america all the time,,,banking crises, housing crises, homelessness, i think they global mind is changing and corporates with larger finances than countries are eventually gonna get reigned in. ofc we are gonna be the last to do it as usual. gombeen politics.
@Mick Heery: I understand that DC’s use a lot, but, do you have a link for the above claim of 1/3rd usage please?
The fact that Ireland has yet to switch to E10 petrol is very telling as to the seriousness of our climate strategy. Literally the lowest hanging fruit, it would remove the emissions equivalent of 100,000 cars off the road practically at the stroke of a pen. If we can’t do something that simple, I’m not sure we’re up to the more serious tasks..
Completely shutting down the import of UK car market totally contradicts govs emission fairytales since local consumer can not get a cleaner – newer car that falls under low co2 regulations from abroad (Since UK is the ONLY AND CLOSEST PLACE where wheel ks right-handed) leaving Irish motorists to use the old diesel engined cars since the car prices are sky high on the island.
The first thing that needs to happen is that people’s attitude needs to change so that they genuinely care and are motivated to make changes to support these goals..
I honestly believe that all the talk in this article will not make people care and threats will only make people do the opposite.
Governments here have a very poor track record on bringing people together as one Nation.
@Roger Bond: people’s attitudes will only change when they see politicians stop squandering billions on every single development they touch.
Start producing results. Not just throwing more taxes at people with no end result visible.
Personally I am more concerned about affording to put fuel in my car, getting appointments at hospital and paying my mortgage.
Regarding climate change I’m inclined to listen to someone who has seen it first hand & that’s David Attenborough, he has said due to climate change & it causing methane gas immissions there’s going to be at least 4/5 viruses per annum!
@Colette Kearns: Sir David frederick attenborough collette. Agree
“Climate Experts” … well. Looking through the history of mankind, the “Climate Experts” helped the society to deal with changes to the climate. They didn’t have computers or smartphones, but an open mind and common sense.
But now that we are in the days of “peoplekind”, our experts are more like the experts of the Aztecs. When the climate changed back in their days, their answer was to kill thousands in order to please their gods, so they’d stop the climate change.
I don’t want to hear another squeak about Planning for more big wind and solar, without first hearing all about the Planning for how they intend filling in the big intermittency gaps. Massive electrolysis plants here or there. Mega grid all over the place.
In reality though all this carbon account game, is just that, a silly game. The only way we will solve this problem is by fighting it as a Warming World War. We need the military industrial combines to stop making weapons and instead make thousands of new generation SMRs. and let the Australians make the fuel for them, instead of exporting vast quantities of coal.
More methane is already boiling out of the permafrost, than from a billion more cows. What the hell are we on about. If we could solve the problem by virtue signalling, it would be solved long ago.
@Nicholas Grubb: I agree…last night on Eirgrids dashboard there was nearly 4000MW of wind available but the grid could only absorb 2000MW so nearly 2000MW of wind power had to be turned off all night but the wind turbine owners still get paid for the curtailment.
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