The grotto at Our Lady’s Hospice, Harold’s Cross, Dublin
A dying parent.
The returning emigrant son.
And end-of-life care In Ireland.
Ken writes:
I currently reside in the US, where I teach college full time. In recent weeks I have returned to Dublin to be with my sick Mother. She has cancer and is currently dying. How long she has is unknown, but we have been made aware that time is short, perhaps months, but some days it seems like she could go any time.
I am writing because I find myself appalled at the lack of end-of-life care in this country. This is my first experience of an up-close and personal family death.
I came with a view to spending a few weeks with my mother, to offer comfort and support and lend a hand where needs be. I now find myself as primary care-giver, at home, with no end in sight, unable to return to my family in the US because there is nowhere for my mother to go.
I have brothers here, and they are very good in terms of offering time, but both have commitments that preclude them from being here full-time, 24/7, which is currently what my mother needs.
She is not eating, barely drinking, and needs assistance with all the most basic and mundane daily tasks. I am not trained for this kind of care, and there are issues of dignity that one finds very difficult to over-come. I feel like I am alone and the system, whatever exists of it, has left us to our own devices.
My mother has experienced some brief periods of respite at Our Ladies Hospice at Harold’s Cross, and her current palliative team visit and do their best, as far as know, but all the emphasis is on taking pills that seem to have little positive effect on a dying person.
There appears to be no concern for the fact that a woman has been left to die in her bed with a son who is shell-shocked not entirely equipped to handle the enormity of the situation.
My father is at home also, but he is eighty two years old, and physically and emotionally unable to be of much assistance.
Today I asked the visiting nurse what the picture would be had I not been here, would an eighty two year old man be expected to deal with all the things I currently have to deal with?
The response was a shrug of the shoulders and some reference to cuts and the economy. Now that banks have all our money, it seems there is nothing left for the dying. We have literally been bled to death. I can’t imagine things having been that much different, one hundred years ago.
As things stand, I feel enormously relieved that I no longer live in the ‘progressive’ Ireland of 2015. This however, is no comfort in the short term.
Pic: OLH
I’m very sorry to hear of your mother’s suffering and your family’s.
I think much end-of-life care actually focusses on allowing the person to stay at home (where they often want to be) but, clearly, if no-one can assist at home, that’s not a good idea.
Availability of end-of-life care seems to vary according to location. I had recent experience in the West of the country with a relative suffering with cancer and it was very good.
I can empathise with you Ken, I moved back to Ireland to take care of an elderly relative with dementia who has since died, and while it was hard work, emotionally and psychologically, I’m glad I did. Keep haranguing the HSE and anyone who will listen to you, get on to your local politicians to further your cause, but don’t give up; even if the HSE can only provide your mother with a carer once or twice a day, it’s better than nothing. Unfortunately, the system is broke, and there’s neither the willingness nor the money there to fix it. Best of luck to you in your endeavours.
There appears to be plenty of money around for trendy social hobby horses, Planning Tribunals, Health Service Executives, personnel payroll and related computer systems and a staff bloated Irish Water.The list of taxpayer wastage goes on and on and on. They money is there, it just isn’t being spent justly .
Why not bring her to USA and avail of their amazing healthcare system?
It’s not as if they waste taxpayer money on unnecessary wars on the other side of the world.
Thank you Serval for your deep insights into the pressing issues of the day. However, even if I were to take you up on your offer (and yes, healthcare is better in the US in my experience), It wouldn’t change the fact that end-of-life care in Ireland appears to be minimal and a bit random. This is not just about my experience, this is about raising awareness. I know Ireland is now populated by feckless 24 hour party people of the most part, but just be aware this is all ahead of you and yours . And by the time you and I are on the point of passing on, I wonder if things will be any better?
This country is full of money. The fact is; the government doesn’t give a damn about your mother,
While I feel for his plight, does Ken actually think that US will be any better? I mean, it would be better as long as you pay for it but that is the same here.
I am willing and able to pay for some private hospice care for 3-4 weeks. I have been informed that no such services or facilities are available on the island of Ireland in 2015. If anyone knows differently, do respond.
Hi Ken, as far as I am aware, there is no such thing as a private “hospice” in Ireland. However, a number of private nursing homes provide similar services. If you haven’t already been in contact with your local Hospice Home Care group please do so immediately. The Tipperary North people were fantastic and let us know exactly what we were entitled to and general help, advice and assistance. It is a free service.
My GP was unable to recommend any nursing homes that offer palliative services. I imagine he would know, but I will look into any local hospice groups.
No, he wouldn’t. GPs are either wonderful or terrible in my experience. Get a list of nursing homes from the HIQA website and just ring around. They do a have waiting lists though so I don’t know how successful it would be. Is your mother under the care of a palliative care team? If not talk to your local public health nurse, your local councillor and your td and don’t let it go. Threaten them with the slSun, the Star, Joe Duffy. That scares them.
Also you can get private care assistants and nurses in your home through organisations like Home Instead Senior Care, nurse on call and comfort keepers. Level of expertise won’t be very high but they can provide intimate care with dignity.
where to begin? first off, sympathies to your ma and your family, it’s a sh1te state affairs dealing with an impending death, all you can do is maintain her dignity until she passes. our family had to do it with my gran when she was at the end – we’d toilet and wash her, feed her etc. we were a bit weirded out by it, as was our gran, but you’ve got to get over that and remember your ma’s needs are paramount.
as for the rest regarding lack of resources, well, we could be here all day talking about waiting lists, patients on trolleys, MRSA etc. unless you’re willing to fund private care, the situation you find yourself in seems all too common.
Ken,
I was in the same position recently, my Mam had terminal cancer. I work full time and was lucky I didn’t lose my job with the amount of time I had to take off to care for her. My children almost forgot who I was. Try getting onto your public health nurse at your local health centre to get some home care. While there’s not much available, you should be able to get even a few short visits a day to help your mam. Your situation is a little different to mine but make sure to tell them that you have to return home and give a deadline for that. Sadly anything above that is at your own expense. Best of luck.
Im sorry for your loss
I gave up work a few years ago to look after my terminally ill father (he begged us not to put him in a hospice). A HSE carer came to the house twice a week for two hours. It meant that I could go up town to do the shopping or sometimes just sit in the kitchen by myself and have a cup of coffee without having to worry about my father.
Also the local Hospice Home Care people were great. They gave us a hospital bed and mattress, wheelchair, special cushions and commode etc. which were all things we could not have done without. I felt bad having to ask for these things, I hate accepting charity, but that is what these groups are there for.
Towards the end a nurse would come daily (I think, I can’t actually remember) to give him morphine and check his general well being (or lack of). I can’t remember if the nurse was provided by the HSE or the local Hospice Home Care group.
Overtime I ended up doing everything for my dad, including feeding, washing and eventually changing his “nappy” (sorry I don’t know what the proper name is). I also had to make all the arrangements for his funeral, ensure that his will was in order and ensure that mum would have access to his money without delay when he passed away.
My dad was sick at the beginning of 2008, when the country was still doing very well. From what you describe, I don’t think the level of what is being offered by the Government has changed much over the intervening years and I definitely don’t think it has anything to do with the “banks having our money”. I would strongly urge you to contact your local Hospice Home Care group, they will be able to help you with equipment and also let you know what else you are entitled to.
Sorry for your troubles, but families have family responsibilities Perhaps the stae should do everything for us? In the US there would be no state support at all, even pallative care (unless apprpriate insurance was in place prior to diagnosis), so you are better off in Ireland. Most developed and undeveloped countries expect families to care for their sick and dying.
Read his post – had his parents no children they’d be in the same boat.
You have a legitimate argument about how far the state should go – but we all know we pay tax at a rate, and have a health budget of a size, that should allow us world-class end of life care at a minimum.
By all means argue for self-sufficiency and a smaller state, or argue for social and health care from birth to death and a large state – but what we’re stuck with at the moment is a piss-poor service and a big state, which nakes no sense. You can’t tax like Scandinavia and expect the personal spend on insurance like America.
Exactly – very well put. Thanks
Ken – my sympathies on your predicament. I admire you for leaving your family in the States along with your teaching job. While your brothers here can’t offer 24/7 care surely a rota can be drawn up so you’re not doing everything? You have commitments as well but have put everything aside to care of your Mam. Surely they can do likewise. At least that way the burden won’t fall solely on you.
As for getting some outside help, I think previous responders have given a good overview of what’s available.
+1
I’m sure between them they could give a week a month or two months for you to see your family in the states.
Hi,
Just thought I’d chime in here, but before I do, I should, in fairness, point out that I know ken and his family and have done for many years, counting his brother as my closest friend.
While I take your point here in general that everyone has to pitch in in difficult situations like this, its worth stating, and I know Ken would agree, that his two brothers have done everything they can to help their mother, taking every opportunity to be with her and sharing responsibilities between themselves and their father. As a family, they’ve really pulled together and worked as hard as they possibly could to look after their mother, not just over the past few weeks and months, but during the many years during which she has suffered with cancer.
Both of Kens brothers are working full time and one of them (the eldest) is married and has four kids, with the most recent being born only just over a week ago. Up to this point they have done fantastically in looking after their mother but things have moved on – they really could use some help and it seems (so far at least) that there is very little available. I can understand the sense of being helpless, after having managed so well up to now to find themselves in this situation.
it’s worth pointing out that while Ken has come back to Ireland from the States to help and to be with his family, he himself has only a very limited time available to him – he is teaching in the States and the summer holiday period over there is far shorter than the three months given in Ireland. He’s stuck, then, between a rock and a hard place, so to speak.
Speaking for myself, it bothers me seriously that citizens of this state, who have contributed throughout their working lives via taxes and social insurance should be left in such a precarious position – that when the resources of their family, however willing they may be, are overstretched – they have very few, or very limited options…they can expect only ‘bottom line’ assistance from the state.
I feel sure that between them, Ken and his brothers will do their very best for their mother – they always have – but I’d like to think that they won’t be alone and unassisted if things continue to deteriorate.
My wife’s brother passed away in January – of cancer – at the age of only 32…it was and is a huge loss for them, but it has to be said that the assistance of the Cancer Society during his illness and later of the staff of St Francis Hospice in Blanchardstown was simply fantastic and won’t be forgotten. I hope with all my heart that Ken and his family can access the help they need.
I hate to bring ‘politics’ into this, but am I right in thinking that Catherine Murphy said via Twitter today that the latest Irish Water bill will see a further E550 mil extracted from local authorities and jammed into Irish Water? If so, then I think that given the situation highlighted by Ken, someone has their priorities totally screwed up…
Thank you Ken for this beautiful and timely post.
I echo other commenters in saluting your strong sense of personal values and also urge you to work with your clearly highly valued fellow family members to develop a way to share the load.
I can empathise with what is happening to you and your mother.
From my families experience, contacting the Public Health Nurse/Community Nurse is the first port of call. They can then make an assessment of your and your mother’s needs, organize Home Help (i.e., help with washing, feeding, getting in and out of bed, onto the commode, etc.) and all the equipment you’d need, such as bed, shower chair, wheelchair, commode, hoist, and so on.
I’d also contact the local branch of the Carer’s Association, they may be in a position to offer respite care for you a couple of times a week. I’m surprised the Hospice Care team haven’t talked with you about this, to be honest.
I live on the opposite side of the country from you, and there may be some small differences of care in different geographical areas, but it can’t be that different.
Hospice care in Ireland is generally provided by St Francis group. There’s minimal public funding. The hospices are good. Tell them what you need and get in touch with the cancer society. End of life care in Ireland, when done well (which is less often than one would hope) is much much better than the US.
A good GP should be able to help. Tbf though, you will have to do some groundwork yourself, Ken. That’s life really, it’s far preferable to have family involved with support from agencies.
The St Francis group only covers North Dublin City and County. We are south west. Thanks though.
he’s 100% spot on. my nan need round the clock care and it falls onto my aunts and uncles to do it, many of them have bad backs and shouldn’t lift her but have to and other family commitments and their own lives to live. It’s shameful that when a person gives so much to their country that it can’t help them during their last days. I straight up told my folks that me and my siblings probably won’t be able to be their helper when they are old and need constant care and they need to plan for that, sell their house if they need to and forget about it being a family inheritance. it’s just mortar and stone it’s them that make it a home, without them in it I don’t care about it.
Ken
there is money for home care for older people but it is mostly directed to hospitals to facilitate discharges so beds are freed up. if your mam is admitted to hospital at any stage, ask to speak with social worker to get home supports in place.
for now contact public health nurse and/or primary care social worker at your mam’s nearest health centre and ask for home supports, say you can’t manage and worried your mam might end up in hospital as a result – hopefully they may be able to access funds to prevent hospital admission.
there is no private hospice service and you’ll have to ring around nursing homes to see if they will provide palliative care – most do by de facto of having residents who ultimately pass away.
i’d consider applying for the nursing home support scheme (fair deal) – forms & info on hse.ie – which will help pay for nursing home care. contribution depends on your folks financial status. your mam might not want a nursing home full time but it doesn’t have to be used straight away and can be good to have as a back up plan if ye hit a crisis of any kind – like you have to return to US and nobody available to take over care. if your mam went sooner, she could come out at weekends when more family available to provide care.
contact the hospice in harolds cross and see if they can offer advice. also carers association can provide home respite.
best of luck with everything.
How lucky your mother is to have you, Ken. Here’s a link that may help a little http://www.citizensinformation.ie/en/health/cancer_services/palliative_care.html
Ken, so sorry to hear your about your family’s sad and difficult situation. It sounds like your mother is linked with the community palliative team from Our Lady’s Hospice in Harold’s Cross which is the same as the St Francis team, just the southside version. There should be a multi-disciplinary team attached to this service and they will provide support and advice, the social worker on the team should be good source of support. Contact your local Public Health Nurse asap – she (or he sometimes) can access homehelp and home care assistant supports while your Mum is at home – limited but better than nothing. Your Dad should also be considered in any assessment as he has needs too and this will also increase going forward. Contact the medical team in your Mums hospital, again there should be access to multi-dis team there. Our services are limited but they are there and your family need them now. It’s hard to negotiate your way around the system especially if you have been living overseas but don’t give up.
Ken
Someone just showed me this post. I too have just returned to take care of my mother who lives alone at home. She has pancreatic cancer and has weeks to months to live.
I left my job as a Hospice Nurse Practitioner in NY to do this, and I can identify with your situation , almost too much. But… I am trained in end of life care. Hospice care in the U.S. Is a Medicare benefit and uniform good care is available to all citizens.
My experience here though has been slightly better than yours.
The oncologist told me to call if symptoms got too bad. I met with my mum’s GP and we discussed the medications we thought she needed, I am a prescriber in the U.S. So I had some ideas. The home visiting nurses can vary, but they are liaising with the hospice nearby. We live in Dunlaoghaire.
In Ireland Hospice care outside of a facility does seem to be symptom oriented, I do not see the comprehensive care, with nurse, social worker and chaplain that is standard In the USA.
The reality I have found in death is that the psychosocial care is vital for you and your mother. She will die, but her death and how it ended will always be remembered by you, it is not just about her and it shouldn’t have to be this way.
I would love to talk with you and share my experience. At the least we can compare notes. I’m in Dublin now. If you wish to contact me, let me know via this thread and I will attempt to contact you.
My heart burns for you and your mum.
Please let me know. Sincerely, John
If the HSE was run properly the devestation thats inflicted on those suffering
terminal illness would be lessened, the amount of work and care that the
Hospice Movement and other Voluntary Groups have given with years is
incalculable, the State should be ashamed of themselves, and then dipping
into peoples pockets with Mary Harneys so called “Fair Deal Scheme” it time
her huge pension was dipped into and escheated.
Hi Ken. I am so sorry to hear your predicament. I have two options for you.
1. Hire in some home care for the mundane tasks and to give yourself a break. It’s about €20 per hour. If she is not eating it sounds as if her time is coming sooner rather than later.
2. If you really are desperate then ring 999 and get into A&E. Pretend if you have to that your mum is having problems breathing. Then refuse to take her out until she has been allocated to a nursing home. This could take months and your mum may pass while in hospital. But at least she will have nursing care. It will be more dignified for both of you. We are born in hospital so dying there is ok too. All you can do is your best so don’t beat yourself up with guilt.
Ar dheis De go raibh a h-anam.
That is exactly why this country has such an enormous problem with overflowing A&E departments, and then furthermore no space in beds for acutely ill patients. How you could suggest such a thing is beyond idiotic