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Caring at Christmas 'I try to remember what my husband was like before he got sick but it gets harder'

It’s my choice to care for my husband but the government should support us carers more, writes Annie McGuinness.

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.

christmas 15 g Annie and Philip enjoying a special moment during Christmas 2015.

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.

Column: ‘I don’t have the same civil rights as other Irish women. I have a disability’>

These are the 24 biggest issues faced by carers in Ireland>

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20 Comments
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    Mute Eoin O'Hagan
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    Dec 23rd 2016, 10:00 PM

    You can feel the love oozing out of this article. Happy Christmas Annie and Philip.

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    Mute sparky
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    Dec 23rd 2016, 10:00 PM

    Annie Guinness” the world needs more people like you”. Total RESPECT. UNFORTUNATELY the government will never appreciate carers and just take People like you for granted. Your Husband is lucky to have you.

    116
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    Mute Bríd Uí Mhaoluala
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    Dec 23rd 2016, 10:29 PM

    I have MS and dread the idea of my husband as carer.

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    Mute Suzie Sunshine
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    Dec 23rd 2016, 10:41 PM

    Why ?

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    Mute sparky
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    Dec 23rd 2016, 11:11 PM

    @ Suzie sunshine..I’m struggling to find out why u asked that question.

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    Mute Suzie Sunshine
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    Dec 23rd 2016, 11:33 PM

    @sparky .. It was a genuine question. She never said why she was dreading her husband looking after her .

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    Mute sparky
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    Dec 23rd 2016, 11:46 PM

    @ Suzie..stfu..do you really need that to be explained to you..let me guess..you’re the type of person who loves the gossip..you might want to look up the word dignity..

    29
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    Mute Vera Clavin
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    Dec 24th 2016, 12:27 AM

    Ah brid.i care for John 24/7.not ms but care all the same.dont worry .not on your own…❤

    21
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    Mute Suzie Sunshine
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    Dec 24th 2016, 12:30 AM

    Sparky .love the gossip ? This is an article that I can relate to .. that’s very close to home and I was asking for her views on it .. but ye, I’m only after the gossip. .

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    Mute sparky
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    Dec 24th 2016, 12:57 AM

    @ Suzie sunshine. people sometimes share personal emotions on the journal, I have. too share them raw emotions should not lead to someone having to give an explanation, sometimes it’s an outlet. Just take it as that.

    12
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    Mute Suzie Sunshine
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    Dec 24th 2016, 9:29 AM

    Sparky .. you can ask a question. . Just like you asked me a question and the person can choose to answer it or not . Both are fine . To tell someone to stfu is not the way to go ..

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    Mute Suzie Sunshine
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    Dec 23rd 2016, 10:01 PM

    A very open and honest article .. I have full respect for this lady. It’s such a hard job to do and with very little help . I hope Annie and her husband have a lovely Christmas . Full respect to her !

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    Mute selfsustainable
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    Dec 24th 2016, 12:14 AM

    That’s one story that has hit me hard today, my mother is going through much the same with my father, he’s 83 and she’s 80, he’s in final stages of heartfailure and each day we all have to watch him slowly slip away, my mother takes such care of him and we find it hard to get her to leave house just to take a break. Carers taking care of their family are the unsung hero’s as it’s 24/7. Thankfully we’re lucky in the sense that we’re nearby to help when we can but I always think of those who don’t have that support. This lady is an angel and I hope they both have the best Christmas they can.

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    Mute Suzie Sunshine
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    Dec 24th 2016, 12:36 AM

    Selfsustainable , your mam is also an angel .. especially at her age too ..

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    Mute Susan Lloyd
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    Dec 24th 2016, 12:22 AM

    My dad dropped dead suddenly in august and we are still in shock but I’m glad for him when I look at my mother inlaw dying a bit every day in highfields from dementia x so sad for everyone enjoy people what you have x so hard

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    Mute Mary Connolly
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    Dec 23rd 2016, 11:59 PM

    Great work happy christmas to you both.xc

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    Mute midlandsbased
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    Dec 24th 2016, 12:18 AM

    Not much to say other than what a beautiful story. I prefer more articles like this than what the Trump-Twitterer had for breakfast.

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    Mute Kath Noonan
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    Dec 24th 2016, 8:23 PM

    A wonderful woman. A 24-7 job of ANY kind is impossible. Govt needs to help these people, allow them to have some kind of life.

    6
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