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Caring for Mam 'Putting myself first is not an option even though I have the most to lose'

I am functioning through a crisis, writes Emma Hayes.

I CAN COUNT on one hand the amount of people I have shared my troubles with. Intensely private and protective of my mother, I have brushed aside texts from pals and I have made little effort to meet anyone recently.

I am functioning through a crisis. Am I doing it well? Probably not and I know why. Because I won’t talk about it. I am the person who will plaster a smile on my face, laugh at people’s jokes. I will meet clients professionally and no one will ever know what I am dealing with.

So, I am going to talk. I am going to share a little part of my life as it is now, not for sympathy, but for awareness. I’m writing for everyone else who shares my worries, my despair and my hidden and silent cries. I am not alone in this and there are many out there struggling with the same things as me.

My mam’s conditions

My mam suffers with degenerative spinal disease, rheumatoid arthritis, COPD, fibromyalgia, chronic fatigue syndrome, diabetes type 2 and she survived a heart attack a few years back. I nearly lost her more than once and there were months I spent by her side in hospital, willing her to get better and weeping alone in hospital halls.

I am not one to cry, anyone who knows me, knows I am the person who will never show emotion. I’ll grit my teeth and grin through every ounce of pain, lumps will lie in my throat and I will choke back every tear that might escape.

Up until a few months back she had limited mobility but could manage to get around with the aid of rollators and her wheelchair. Though she required oxygen and care, it was manageable. But nothing ever lasts forever, does it?

Needing constant care

Now things have changed, she has recovered enough to leave hospital but requires 24-hour constant care and is currently in a local nursing home. I now shower her, do her hair and nails, feed her and do the toilet runs.

She cannot grip anything, nor hold even light things and standing is impossible for her at this stage. I must rub cream into her, check for bedsores and do everything for her. Unfortunately, I have two more weeks before she must leave her nursing home and herein lies my biggest problem, what am I going to do?

My house is not equipped to care for my mother. With no downstairs bathroom and not even an extra room my choices are limited. And then, here comes the self-indulgent part of me. I am 33 years old with two children of my own and I have a husband to consider too.

Could I do it all?

What about my writing aspirations? Could I do it all? I don’t want to lose that part of me. Having only found writing in the last two years, my world has changed. I want to be a writer so much that considering losing that would probably break me into pieces.

But you know what else hurts? Leaving my mam with inappropriate care. It keeps me awake at night leaving me breathless and panicky.

The last few weeks or months I am in a continuous stage of guilt, guilt for leaving my kids each day over the summer. Unable to do many trips, they for most part, have sat around all summer. When I am with my mother I feel guilty for being there and when I am with my kids I feel horrendous for abandoning her. I can’t win this, I will never please everyone and I will never be able to do it all no matter how hard I try and believe me I am trying.

Apart from the tiredness, probably caused by my inability to sleep, my body aches from the lifting and transferring her from bed to chair to toilet and back again. I leave the home in a state of exhaustion and walk on home blaring music in my ears to drown out my thoughts. The walking I do to and fro, and to meetings adds up to two hours a day.

Struggling through my daily schedule

I get up at 6am or so, work all morning either at home or in-house depending on my schedule, I spend the afternoon with her before returning to work, making dinner and once again doing more work. Every day, I may get a coffee break and in most cases I could go all day without eating anything till dinner time.

I struggle to find time even when I manage my diary so strictly and each morning I wake with a sense of dread and must will myself to get up and do it all again.

The truth is the world doesn’t stop turning because mam is ill, the bills will still shoot through the door and my work still must be done. I have masses amount of work to do for next two weeks and I know I will get it done but I am literally functioning with little or no rest time.

I can work on my laptop while she sleeps. In between the countless toilet runs and her dinner/lunch, washing and popping her in and out of bed. Is it easy? No, but it is about doing the right thing for family.

Family is everything, and as I look at my two young daughters, I want them to know how we are defined by what we do and how we treat people, not entirely by college degrees or accolades. In life, we are often told to put ourselves first but in some cases, that isn’t possible and I am not that person.

Putting myself first is not an option even though I have the most to lose but living with regret is something I never want to do even if it means losing parts of me through this journey.

Emma Hayes is a professional writer and social media consultant for businesses and websites. You can follow her here.

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    Mute Catherine Sims
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    Aug 13th 2017, 8:50 PM

    Emma if you mother is coming home the you need a home care package. This will allow Carers into help with washing changing and so on. There is no getting away from the fact that you will still be needed. I looked after my father and son and a break from one still meant caring for the other. The rest of my family never saw me. It’s time to start speaking up. Look for respite care too. It’s not easy and it can be exhausting and at some point you need to start looking for help where ever you can get it.

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    Mute Susan Scanlan
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    Aug 13th 2017, 8:58 PM

    Hi Emma, been there myself (not with my Mam but my husband) I get it. I also know that this level of effort/love your putting in is not sustainable. Sure you could put in another few months but your risking your own mental health at that point. Your physical body will also start to deteriorate also, who will look after your Mam when your floored with a bad flu or other illness? The level of care your Mam requires is high now. It’s impossible for you to do this yourself and it’s not ok that your Mam will suffer as your physically and mentally deteriorate from this utter off the chart stress your under (i remind you, I GET it)….refuse to take your Mann out of the nursing home, they won’t turf her out on the road and she will get looked after…….ask yourself this, would you want one of your children feeling how you are right now? I know your a strong person, but your tired and you have to rest and get other support in place to ensure your mother receives the standard of care she needs and that her daughter can begin to live again and her children. Mind yourself pet . Proud of you!

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    Mute Suzie Sunshine
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    Aug 13th 2017, 9:18 PM

    @Susan Scanlan: the only way is to refuse to take her home and take it from there . . Hard decision but the best one for her family ..

    108
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    Mute Dave Hogan
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    Aug 13th 2017, 8:49 PM

    A red carpet and a blank cheque should be rolled out for people in that situation , why not ? It was done for the banks.

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    Mute Tony Daly
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    Aug 13th 2017, 8:55 PM

    There is a limit to what any career can endure or should be expected to sacrifice. Your efforts have been truly heroic in that authentic meaning of that word but please also think about yourself. Life is relatively short and it is a tragedy to see careers suffer premature morbidity and mortality due to the burdens they valiantly embrace.

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    Mute Catherine Sims
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    Aug 13th 2017, 9:00 PM

    @Tony Daly: That’s nice perhaps you can tell that to Leo and he can repair the damage done to our pensions and such because we had to leave the workforce. Emma needs proper support and that is what she and her mother should get.

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    Mute Carol Oates
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    Aug 13th 2017, 8:59 PM

    I feel you. Of all the sacrifices I’m made, pulling back on my dreams of writing has been the hardest. As you say, putting myself first is not an option. Everything else from career to relationships, to my mental health has gone by the wayside. I am still clinging to the notion one day I could balance the time investment required to be an author and the time required to care for my disabled adult son for the rest of my life. At the moment, it’s a non starter. Some will say if you really want it, you will find time. It’s really not that easy. I wish you, your mum, and your family all the best.

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    Mute Greg Blake
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    Aug 13th 2017, 9:05 PM

    Emma you are an inspiration for anyone struggling with life problems. It is normal to also worry about other things, mundane and important while you are so engaged with your mum. There is no real answer on the Journal for you. We can offer sympathy and complain about lack of government services. We can write snarly comments about ministers and the HSE, but nothing is going to change, all you can do is see what voluntary help you can find and kick on official doors as much as you can. It’s good that you are complaining out loud, the administrators of our health system would prefer that you and your mum and all the others would suffer in silence. That old line about not going quietly into night seems apt.

    61
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    Mute Greg Blake
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    Aug 13th 2017, 9:10 PM

    @Greg Blake: I like that suggestion by someone above that you refuse to take her home. It sounds a hard thing to do, but you could force them to provide some alternative for you both.

    49
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    Mute Mary Kennedy
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    Aug 26th 2017, 12:00 PM

    @Greg Blake: I had to do this for my mother. On her doctors advice I had to stay away from the hospital and the HSE had to get her a bed in a very good nursing home. Up to that they wouldn’t budge. Staff and care was brilliant.

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    Mute Tony Daly
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    Aug 13th 2017, 8:53 PM

    I have decided that if it seems that I may become a burden on others with a poor quality of life I will self euthanise. I have selected the means, method, place and the factors which will trigger the action.

    52
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    Mute Catherine Sims
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    Aug 13th 2017, 8:57 PM

    @Tony Daly: That’s great Tony but not at all helpful on this thread. No one wants to be ill or infirm and no one wants to be a burden but for those of use who do the caring we want to care for our loved ones. We just need a bit of help. Our loved ones are incredibly important to us and actually we don’t want them killed off. Our population is getting older and rather than advocate mass sucide once someone hits retirement it’s better if as a society we care for our elderly and infirm and not treat them as a burden. If we are lucky we will all be old one day.

    128
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    Mute Dave Hogan
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    Aug 13th 2017, 8:57 PM

    @Tony Daly: ease up tony you sound like Jim jones.

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    Mute Suzie Sunshine
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    Aug 13th 2017, 9:11 PM

    @Catherine Sims: nobody is saying to kill off the elderly or having mass suicides just because you’ve become old ..

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    Mute Dave Hogan
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    Aug 13th 2017, 9:19 PM

    @Suzie Sunshine: maybe just the ones that drive so slow that snails overtake them.

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    Mute Suzie Sunshine
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    Aug 13th 2017, 9:33 PM

    @Dave Hogan: :)

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    Mute Dave Hogan
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    Aug 13th 2017, 9:41 PM

    @Suzie Sunshine: sorry suzie just trying to lighten the atmosphere.

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    Mute Tony Daly
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    Aug 13th 2017, 10:05 PM

    It should be permissible for individuals to make their own informed choice on how much they can endure for themselves and for their families.

    Some of us don’t wish to endure a poor quality of life and to consume the limited resources of our families and of society.

    We live in a society in which lower taxes rank as a preferred priority over the funding of adequate community and home supports for those who are seriously ill or dependent.

    I have no intention of being a care burden on my family or others. The main burden would be on my wife. She deserves better. Pre planning better secures that objective.

    The situation would be different if there was a more caring and supportive society but we have to live with or die with the circumstances we find ourselves in.

    Death is far from the worst possible outcome.

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    Mute Dave Hogan
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    Aug 13th 2017, 10:10 PM

    @Tony Daly: to really experience losing the will to live try watching fair city.

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    Mute Suzie Sunshine
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    Aug 13th 2017, 10:42 PM

    @Dave Hogan: no need for apologies. . It was funny. . :)

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    Mute Vincent O'Halloran
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    Aug 13th 2017, 9:14 PM

    The amount of help you will get from the HSE is minimal. It will also depend on where your mother lives. The HSE in Cork South Lee were worse than useless.
    Both my parents are now in nursing homes under the Fair Deal system.
    This is the strategy employed by the HSE and Dept. Of Health. The health system in Ireland is dis-functional and the policy is to bleed your parents of 80% of their income and 23% of their assets (per person).
    Unfortunately, this is Ireland 2017 and the sooner your mother enters a nursing home thE sooner you will get some form of freedom back into your life.

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    Mute Jim Flattery
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    Aug 13th 2017, 9:28 PM

    @Vincent O’Halloran: He is absolutely right . The Fair Deal is the only way to go at this point . To get the fair deal may be cumbersome and you’ll be sick of the endless questions , but it’s the only way to go . Your mom and your family need you to be well .. the course that ye are on at the moment is not sustainable . Look into it Emma, for your sanity . You are to be applauded for the care you give to your mom.

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    Mute Brian O Reilly
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    Aug 13th 2017, 9:07 PM

    Emma , you need to look after yourself,the weight of all you have to do would cripple a team of professional care givers,you need and deserve help,where ever it comes from,
    People.we need to address this issue as a matter of a crisis,we have to support the care givers,Emma,sharing your experiences and ongoing struggle is another service you have done ,I hope you get help ,from whatever quarter it’s too much responsibility for one .and manage children and a career,?

    You write movingly and without self pity ,but self regard is paramount,Take Care of Yourself

    47
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    Mute Sue Phelan
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    Aug 13th 2017, 9:42 PM

    As a part time carer I have seen and experienced how tough that work is but help is out there. Talk to your public health nurse get an occupational therapist out. You should have a hoist, hospital bed, cammode. Your mam could have an procedure to put in a catheter to help reduce the toilet visits. You can get adult nappies. You can get a lot of support through the hse but you have to get it in motion through your public health nurse. Get a primary care certificate, that means you can get your car adapted and there’s a grant that pays for that, you wouldn’t have to pay tax on a new car and wouldn’t have to pay tolls on roads. There’s a lot to arrange but it’s achievable, especially if you want your mam to stay at home. Our home care package takes a massive burden off our shoulders but it takes a long time to get those hours with carers. We have two relatives both with advanced dementia. One can’t walk at all anymore or understand any speech. We find it’s been so worth it. Our experience with respite has been really poor. Always find them coming home worse off that they were sent in. Bed sores, sores from where they hadn’t been dried properly after showers, dehydration, weight loss. It’s turned us off full time care.

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    Mute Sharon B
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    Aug 14th 2017, 12:23 AM

    Emma, what area do you live in? I may not be a nurse but if I could help in any way I’m willing. I think we’ve lost our way a little re care of the elderly, years ago when I was a child I remember care being shared out amongst friends and neighbours, it may have only been for a little while to give main care givers a break but it helped.

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    Mute Mary Kennedy
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    Aug 26th 2017, 11:50 AM

    @Sharon B: I agree with you. There could be others that would be willing to help but are afraid of “interfering”. If she gets sick herself what will happen to her mother and her family. She HAS to look after her own health first. Not easy to think this way when it’s a loved one. I hope for the best for all of them.

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    Mute Linda Oreilly
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    Aug 13th 2017, 10:03 PM

    We had similar experience with my Dad. For the last 10 months he went from hospital to nursing home to hospital. Eventually he was admitted to Vincent’s hospital.then the fight started. Some homes came and assessed him but would not take him. I fought and fought told them they had to find somewhere that I was not the professional eventually they found a great nursing home for him.it is private but was told there was a waiting list. Now it appears to me that if you are in hospital you will find a bed quicker

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    Mute Catherine Sims
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    Aug 13th 2017, 9:04 PM

    What does your mum what Emma ?? Ask her.

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    Mute Deirdre D'Arcy Murphy
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    Aug 13th 2017, 10:12 PM

    If you would like my story and advice pm me. It’ll provide u with the information you need regarding nursing homes !

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    Mute Spilt Pint
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    Aug 14th 2017, 2:17 AM

    It’s a shame you’ve ruled out putting yourself first as an option as it was going to be my first suggestion. Both my parents have been very ill for the last ten years, being a bit selfish has not only given me the strength to support them, it’s given me the strength to not go under. There’s a reason the flight safety videos tell you to put your own oxygen mask on first

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    Mute Jim Flattery
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    Aug 13th 2017, 8:47 PM

    Emma, she probably needs to go to a nursing home again . It’s too much for you to handle and you risk getting sick yourself . Have you tried the fair deal? It looks she needs full time care .

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    Mute Brian O Reilly
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    Aug 13th 2017, 11:15 PM

    Deirdre Darcy -Murphy ,good woman actual offer of help

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    Mute Emma Hayes
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    Aug 16th 2017, 6:58 PM

    Thanks for every single comment. I read them all and I appreciate every message. Everyone has been so supportive and I am truly humbled by the response. Thanks so much, Emma

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    Mute Liz McHale
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    Aug 14th 2017, 12:44 AM

    Try doing all this with a parent completely bed ridden, with Alzheimer’s and bowel cancer, living with us, with 2 young children for 12 years, and now the DSP want all the carers allowance back because my home, my ‘principal private residence’ was in the uk, not here. I moved back here to care for my dad and moved into his house as with Alzheimer’s it would be easier for him. It’s just crap!

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    Mute Ally Collyer
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    Aug 14th 2017, 1:36 AM

    @Liz McHale: I hope you have put in appeal with regards to the DSP’s demand!! They are very good at makey uppey rules and known to be bullies and liars – I speak from personal experience!!!!

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    Mute Kate Kelly
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    Aug 14th 2017, 3:23 PM

    @Liz McHale:
    I second Ally Collyer’s advice. Appeal, and if they refuse your appeal then go straight to the Ombudsman for help (you need to exhaust the DSP’s process entirely before the Ombudsman can step in but they will advise you if any stages are yet to be completed when you ask them for advice).

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