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End of days...
The decision to care for a terminally ill cancer patient in the home is not one easily taken, yet every year, hundreds of people choose to care for their loved ones in this way. With no medical training and possibly no respite care, the work can be exhausting and heart breaking, yet it can also be the most gratifying thing a person can do and few will regret the decision to allow their partner, parent or child die at home surrounded by those who love them the most.
For those who do choose to care for a loved one in the home, certain times can be harder than others. One such time is during the night. A comprehensive review carried out by the Irish Cancer Society of their night nursing service found that night time continues to be the most beneficial period for a nurse to be present for both patient and family. But why is this?
The ICS night nurse service is of invaluable help to families caring for loved ones who are terminally ill.
"The night time is more terrifying for both the patient and the family because problems appear compounded", Pamela Burrell, a night nurse with the Irish Cancer Society (ICS) told irishhealth.com. "There is a lot of fear at night for many reasons. People feel they can not ring people if they need to talk. It may be more difficult to contact a doctor if the patient's condition worsens. And of course there is the issue of tiredness", Ms Burrell said.
Over 850 families availed of the ICS's highly regarded night nursing service last year. Following a recent extension of the service, this number will undoubtedly increase over the coming years. The service is normally arranged by the patient's own GP, public health nurse or by the home care team.
"Often it is the home care nursing staff who initiate the night nurse staff", explained Joan Kelly, nursing services manager with the ICS.
"If a home care nurse feels a patient is becoming weaker and requires a night nurse, they contact the ICS, which then makes contact with a local night nurse to visit the family", Ms Kelly said.
The service has been extended from five nights of care to seven, while the overnight time period for which nurses are available has also been increased from eight to 10 hours. The service is also now available to all patients with cancer, where it had previously been confined to medical card holders only.
The night nurse has many roles, ranging from observational to attempting to relieve the pain and agitation that can be associated with a terminal illness. If a person has an illness such as dementia or Alzheimer's disease, they may not always be aware of what is happening around them. They may have a distressing incident, such as wetting the bed or experiencing pain, however they may then forget such an incident.
However with cancer, a patient's mental state is not affected, therefore they are completely aware of what is happening. This, according to Ms Burrell, can result in a lot of agitation and restlessness on the part of the patient.
"The patient can become very restless because they may be experiencing such weakness that they are literally lying in bed all day. They may require help simply to get out of the bed. As a patient becomes more critical, medical intervention will also become more frequent.", she explained.
For patients who are largely confined to bed, skin care is extremely important as pressure sores may develop, according to Ms Burrell. However it is not just the patient whom a night nurse has to deal with. The nurse also has to deal with perhaps an entire family, all of whom may be very distressed.
"It is a very difficult and vulnerable time for people and in some cases, certain family members may not have seen the patient for a long time. There may have been estrangements within the family. People may come home from abroad to see their loved one in a very ill state", Ms Burrell said.
"However it is important for everyone to be involved, especially children. While you will not let children or grandchildren see everything as this would not be appropriate, it is important to encourage them to get involved and above all, to be honest with them about what is happening. Young children often handle it well, whereas teenagers tend to be more detached", she added.
Does a nurse become attached to patients and their families? What happens when a patients dies? Does contact with the family stop? "You may become attached to particular patients. Sometimes because they are in a vulnerable state, they may talk to you and tell you things that they would not normally say if the situation were different. It is the same with the family and contact with the family does not always immediately end after a patient's death", Ms Burrell said.
"The home care nurses are wonderful and they would usually organise things, such as bereavement counselling, however the night nurse may ring a family after the death of a patient or they may attend the funeral if asked. In some cases, the family may ring them. It is really dependent on what the family wants", Ms Burrell added.
The night nursing service provided by the ICS is free of charge. It is funded by Daffodil Day, the society's annual fundraising day, which is held every March.
For more information on this service or any of the services offered by the ICS, call the cancer helpline on 1800 200 700. Calls are free of charge.
For more information on cancer, visit the ICS website athttp://www.irishcancersociety.ie/
Last Reviewed: 22nd March 2002
|Anonymous Posted: 28/03/2002 12:53|
|This service together with the home care team was invaluable to our family during my husband's recent illness. The night nurse was so gentle, caring, honest and practical that it lightened our load considerably. The all round care, firstly,of the patient is so good and then the awareness of the difficulties being experienced by the rest of the family is simply invaluable. Their sensitivity makes life a little easier, particularly at such a difficult time when everyone is feeling very vunerable. A truly invaluable service.|
|Anonymous Posted: 06/09/2002 12:08|
|My grandmother died 1 month ago from a very short illness with cancer. 2 months after she was diagnosed she passed away peacefully at home surrounded by her family. we couldnt have done this without the support of the hospice who called every day and encouraged both my grandmother and us. we now have no regrets as to our decision to nurse her from home and can be at peace knowing that her death was as painless and peaceful as possible. this is all thanks to the nurses from the hospice whom we will always remember for that.|
|Anonymous Posted: 27/11/2003 15:19|
|I just wanted to say a brief word on the ICS. I nursed my father at home when he was terminally ill with cancer. It turned out to be quite sudden in the end as he was only in bed for 2 days before he passed away. On account of this, we didn't have an opportunity to use the night nurse service from the Irish Cancer Society BUT when my father was diagnosed I rang their helpline. The counsellors are excellent and seem to work very much 'behind the scenes'. No question is too stupid for them. I found them to be a great help and great comfort. The service provided by the Irish Cancer Society is invaluable and one we should never take for granted. I guess we all hope cancer will never affect us..|
|Jakki(YFN15681) Posted: 08/10/2004 17:24|
|I work in a nursing home in Canada however I have a deep interest in Palliative Care I am truly impressed with what I am reading about the night nurse going into someones home to provide not only symptom management but helping to decrease anxiety which I know escalates at nighttime. When I worked in a palliative care unit patients often told me they were afraid to fall asleep at night because they might not wake up the next day. I am a social worker and will share your invaluable information with our palliative care team here in the Home. I love your site and it is very encouraging to see what other countries are doing in palliative care! Many thanks. Jakki|
|bu bu Posted: 31/03/2008 20:39|
|My father was sent home by doctors 3 years ago last january with 6 months to live. The man is still here! unfortunately he is getting other complications now. He has Gangrene in his little toe in alot of pain with it.He has had no pain with the Cancer at all. He is in respite now for 2 weeks but my mum has been diagnosed with advanced Alzheimers. Problem is when dad was at home we knew mum was ok not to stray now we have been advised to put dad in a nursing home. the decision to do that is so hard seen as though he wants to be at home-he doesnt like been on his own. but now I have to think of mam.Any advice would be greatly appreciated. One question how does one inquire about Night nurses?|
|bu bu Posted: 06/04/2008 07:33|
|hello the decision was taken out of my hands yesterday about my dad- he passed away peacefully with us all by his side. the Hospice were brilliant and they do not get enough credit for it. RIP dad.xxx|
|Ann Posted: 07/04/2008 10:58|
|My sympathies to you bu bu. Nice that you were there though. Best wishes|
|bu bu Posted: 07/04/2008 20:16|
|thank you Ann. the Hospice were brilliant they knew dad hadnt long and had us warned in a round about way.He was in no pain and so peaceful, I am thankful for that.|
|rk Posted: 12/05/2009 16:30|
bu bu i'm sorry for your loss. i had mam at home being nursed too she had a high grade brain tumour and we had her home for just under 6 weeks and it was tough at times but i would do it all over again my mam was my best friend. mam was bed ridden for the last 10 days and i am very glad to say we managed to keep her free of pressure sores and the like. we had a night nurse twice and when we got the first one we thought she was good and she was but when we got the 2nd one the next week which happened to be mams last night oh my god she was just great i could not praise her enough she was really brilliant and i know that mam was so well looked after on her last night. the hospice was great and we had a brilliant community nurse too i am just so glad we had the option of having mam at home cos i know it meant so much to her (even though she didnt know how sick she was) and to me too
|pet Posted: 12/05/2009 21:35|
Hi my beautiful mam passed away just recently. Although we only had the night nurse for one night as mam went very quick, we will never forget her. Pearl was and is to us an angel. She felt like part of the family and didnt interfere with anything. She let us do everything as that is what mam wanted. To holding her while she passed over , preparing her and laying mum out. It is something I will never forget and to have such a service is priceless. Long may this service continue. I find great confort in knowing that last breath Mam took was in our arms in her own bed and with us all in it. Exactly the way mam wanted and made possible by our lovely night nurse Pearl and St Francis Hospice Homecare Team.
|buzz Posted: 13/05/2009 11:12|
Are these nurses funded by Irish Cancer Society? I think it's disgraceful that they have not yet reached their target funds for the year. You would think that hospice care would be a fundamental right, and not something that should rely solely on donations and fundraising. The government could spend 60 million euro on a bridge yesterday, but they will not support hospice care. Beggars belief. I am fortunate that I have never had any family member in that sad situation but these nurses do such a wonderful job, and there should be more funding to provide adequate support for family and their sick relatives at such trying times.
|bu bu Posted: 19/05/2009 11:53|
I totally agree with you Buzz.Its like the important things in life dont matter to those people.It cud be possible that they hav yet to go down the road that we hav already travelled and I hope it will be an eye opener for them when they have to.We hav survived up to now without a ******** bridge pardon the french(it makes my blood boil)yet the country is in such a state and here we are building a bridge where did the money come for that?????
I have one regret with my dad.I wanted to keep him at home and he wanted to stay.I know with mam the way she was and the bickering family i hav it wudnt hav been easy but if I had only known he had such a short time left I would hav moved in to look after him.Im not faulting the Hospice they wer brill i cant praise them enough but dad wanted to die at home.Now I see mam in a nursing home and she is picking up everything too-life is so unfair.The elderly r just forgotten about and I think that is so sad.
|pet Posted: 19/05/2009 14:10|
BuBu I'm so sorry to hear about your Dad. With regards to your Mum can one of the family go as her carer and maybe have her home? I know its hard but the support of the carer's association and the hospice's are invaluable and you can pick up a phone at any time, day or night. You're not left alone. While my mum was in hospital an elderly lady was left in her bed and her leg got entwined in the bar of the side of the bed. All she wanted to do was go home.She was neglected and passed away very quickly. If I could have taken her home I would have, she had all her wits about her and in the end told them to stop trying to keep her alive. It was heartbreaking, then to be left in a ward for several hours because they had no where to let her be laid out...What is the world coming to when we can allow this to happen??? We need to start fighting because its a basic human right to die with dignity.
|buzz Posted: 19/05/2009 14:29|
Agreed, also there is no incentive for caring for elderly relatives at home. No perhaps that is phrased badly, of COURSE there is incentive - the act of being able to do it in itself, there is no HELP for those who wish to care for their relatives at home, and no facilities in place. If we think about it, a care home will cost the state (or said value of the persons house after they die) an average of 3,000 a month, yet the government give our carers a measely 220 a week. There are people out there who would love to be able to do this one final thing for their parents and repay some of the love and care they showed while rearing their families yet most of these people simply cannot AFFORD to take the time off work or do not have the (very expensive) facilities at home for bathing, excercise etc. God forbid if anything like that happened to my parents I know that my brother and myself would be stuck in our jobs because neither of us could afford to lose a salary of 3000 a month and swap it for 880. There are many people in this position.
The system needs shaking up. PROPER wages need to be administered for anyone who leaves work to care for a relative, to enable them to do so with peace of mind, grants should be offered to kit out homes with proper caring facilities and families should have access to palliative specialists if needed. There needs to be proper training modules for those embarking on a time in their life where they will care for a relative to prepare them for the emotional aspects involved, and support groups so that they know they are not isolated.
ALL of this would probably cost the state less than what they pay in nursing homes anyway, but our typically short sighted government do not see this.
|bu bu Posted: 19/05/2009 18:45|
dad passed away last April 12 months RIP.Since then I hav been looking after mam at home with the help from my niece.I don days 8 to 8 she don nights.Unfortunately with Alzheimers its a curse of a disease.we wer worn out and everyone was fighting.I have one half sister and she is nothing but trouble to this very day she has caused me grief.I have bn out of work 4 yrs went back two yrs ago but had to giv it up for 2 reasons one my health two my dad wasnt well and mam wasnt coping so I quit my job. the nine months that we looked after mam at home she didnt get sick once she has other things going on but they wer all under control.Now she has been in hospital for a week has on going kidney infections and now has a chest infec again.when mam was at home she was active i took her to parks took her to train staiton walking getting exercise plus she was in her own home.Now she is sitting in an armchair all day!!!!!mam went in for respite in Jan 3 days later my hubby had a heart attack he pulled thru ok call that justice???? yet my darling sis can accuse me of things!!!!!
|rk Posted: 22/05/2009 11:16|
hi pet and bu bu
i had the same hassles with my family it was mostly just left to me from the begining when mam got sick in the furst place and i ended up doing days and nights all rolling one after the other and i honestly dont know how i got through there is 5 of us and i traveled home from england every weekend and then 2 of us done all the hours here and the other two had no input at all mams illness was just an inconvenience to their life.... enough said i just have nothing to do with them at this stage in my life. but on the subject of night nurses the second one we had which was on mams last night with us was also pearl and oh my god she is so much an angel. she is one very special lady
|bu bu Posted: 06/06/2009 16:30|
hi all- I never had a problem looking after mam in her own home in fact I was willing to move in with her but that was frowned upon by my half sister. She is the one that was working because she had a family to rear and I understand that completely but when it came to caring for mam she just suited herself.We had to get a routine into place for mam but oh no she would com at her own time then when we were not ther it was why wasnt I told to this day she is a thorn in my side. both my parents needed care and i got on with it and Im not gona apologise to her for that.All she wanted was to put both of them in a home so that she wouldn't have the hassle.I wanted to keep mam at home and esp now that she is on medication we could have done it. I could have done days and we could hav got a night nurse and i could swop do nights too.But she felt left out,yet it was ok for her to go off for 5 months or more and leave me to look after mam just so she could prove a point. Now she doesnt want me to look after things anymore - she ' a clue. Why couldnt she just help instead of criticisIng anD causing more aggro which we don't need.
|Russel Posted: 06/06/2009 22:00|
Hi folks, just to tell you that 3 yrs ago lost mum to lung cancer, and just over a year ago lost my dad to the blasted thing. With mum thank God she didn't get to the last stage, she died in her sleep in peace. but with dad he lingered on till the last, 9 of us in it and fair play all did there share, in the last 5 nights the cancer care nurse was with us and I tell you she was an angle, a God sent. These people don't get enough credit for the job they carry out. Just a week after dad died they discovered a tumor in my lung and they were sure it was cancer especially with the history of mam and dad died of it. I'm in limbo now and just dont know where to turn. If it is in the family its in the family. They tell me they are keeping an eye on it but i dont know. It's just I dont know what to believe anymore at this stage. With all that happened over the last few years I get it hard to believe anyone or anything.
|bu bu Posted: 20/06/2009 15:11|
Russell you certainly havent had it easy.It is hard enough to lose one parent to the damned C but the two of them its unfair.Now you hav to deal with your own health.Im sure you hav asked all the questions and what can be don for you. Is anything been don for you?Can doctors tell you anything to giv you hope?I dont want to pry or ask too many questions but you can talk away here even if its to just let off steam.Life can be so unfair and my belief is that this life we live is hell and that we go to a better place.Im sure your mum and dad lord rest them will help you.my dad passed away last April twelve months from bladder cancer he was sent home with three months to live and survived for three years later!Whilst dad was sick we discovered mam was showing symptoms of Alz so we are now dealing with that.mum was put into respite and three days into that my hubby got a heart attack-he recovered thank god but then we had to make the hardest decision ever-mum had to go into a nursing home and that brought on a whole new world of problems.So I think everyone has some burden to carry but i feel once you hav someone to talk to it helps.Russell dont be afraid to demand answers and treatment and dont be left on the long finger.Speak up and i mean it cos i discovered that 4 yrs ago and that is another story. Drop in anytime to chat ok.Take care
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