Quality Of Life - At the End of Life - In Hospital

Health & Diet Health & Diet: Chat / Discussions
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My Daughter-In-law, just over 50, a very caring Senior Cancer Nurse, at local Hospitals, was, herself, diagnosed with Cancer, about a year ago.
In and out of Hospitals, several surgical procedures, including what is often called, “Taking it all away”, she & my son have remained hopeful , that it would be fixed, eventually.
When it returned, a few weeks ago, she had to go back in, being in agony, (the ambulance took 9 hours to come for her - perhaps a Covid spin off)) .
Sadly, this time, it became clear that the options have run out.

At this point in time, she is in a room, on her own, no TV, doctor visits have lessened, visitors can be seen in a sort of Garden Room, to which she gets wheeled, in her bed.
Last time, she waited one and a half hours, after visiting ended, before she could be wheeled back to he cell (room).
Nurses visit, several times, to connect her up to her feeding pipes, some very caring, some very little caring.(Covid may be draining some of the good will & care!)

Doctors don’t do weekends, so information is low.

So, her life, at the moment, is being in a small room, minimal contact, with just a “pain” device which she is advised to readjust each time the pain increases.

Being a nurse, she knows that this will reduce the pain - but also her conciousness, so, she doesn’t increase the dose, preferring to get through the pain to get more time with her children & my son.
She is aware that, once she is “out of it” she may not get to “come back”.

This has become the reality of life “at the end”.

There is little you can do to complain, when a carer, for example, leaves something out of reach, or you don’t get timely toilet service, or nobody has a plan any more.

Hopefully, we can get her home, before it’s too late, but seeing as her feeding, her care, needs so much attention, and the attention is under so much pressure, we can’t see how.

Anyone else suffering in this way?

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Oh Ted, my heart goes out to you.:hugs: I haven’t experienced this personally, but have seen it when I have been in hospital. Its frustrating and disappointing and anger inducing all at the same time, and I don’t know what else to say. I’m glad you shared this though, I’m thinking of you.

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My heart goes out to you and your family and I feel so sad for you all.

My daughter is at the beginning of her journey through Chemo, I try to keep her positive but I think we all worry about the future.

My very best wishes to you all, I hope, at some time, your Daughter-in-law will be allowed to come home.

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Ditto. :hugs: for your family too.

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Platitudes here are not enough, but sadly often it is all that we have to offer.
:hugs:

In the past as a result of my career path I saw a lot of this over many years and in many places, and even when it isn’t your own nearest and dearest it is heartbreaking so I can assure you that you have my sympathy at what I know is a time of many concerns.

Even if you can’t get her home @Tedc, many places nowadays have specialist providers offering non-hospital care for a variety of circumstances and the usually-excellent MacMillan and/or Marie Curie nurses should be contacted to see if perhaps there is anything suitable in your area.
Hospital wards can usually help here but if not I’ve included contacts below.

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I am so sorry to read this . Although I dont know her I am thinking of her . :two_hearts:

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That makes for very sad reading Tedc. I can only agree with other comments on here, and send hugs to you all. Xx

Thinking of you, your dil and your family. Xx

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Ted Cancer in the illness that we all fear & feel we will die from.I know because I went through the same emotions when I had an aggressive tumour, but I was fortunate and survived
Your DIL will be suffering, both mentally and physically so keep asking, in whatever way you can, if there is anything that would help her feel less isolated.
If doctors have confirmed it is terminal then please consider what Zaphod had posted, My Macmillan nurse was fantastic.
I can only offer my sympathy to you, your son & your grandchildren, but perhaps she may gain some comfort from looking at old photos when times were happy & It hame give you something to do to help relieve all their sadness for a while.

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Very sad to read read this Ted :icon_sad: and for you too.
Have your family considered a Hospice .

A couple of years ago my niece cared for her husband M at home along with her 3 sons all in their teens one doing A levels. My nieces husband M had a particularly nasty and virulent form of cancer and was embarrassed to be seen because of the form it took so refused a place in the hospice .
The boys were so good carrying their father into the shower and holding him up, and sitting for hours reading to him. Nursing such a sick person at home took its toll on all of them and they were young and fit .

The hospice were very kind and helpful and gave support in many ways including loaning equipment and sending one of their nurses.

Maybe asking advice from your nearest Hospice is something to consider.

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Thank you for your replies.

They are very much appreciated.

The question of Macmillan (and other) care is being discussed.

I think that will be ready when she is deemed ready to leave hospital.

The rest of my offsprings, Daughters, Grandchildren, all their other halves, etc., have been over to their house and rebuilt the garden, the patio, re-painted everything in sight, you name it.

That keeps their minds occupied.

I have to admit that I have never seen all of my family so united in wanting to get things going together.

I didn’t see that coming - and I wish I had!

We all have to hope that she will get to see all that and know how they feel!

Thank You

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Hi

I do not have Cancer, let me make that clear.

I have an inoperable heart condition with two other inoperable conditions.

I am medically managed, but self managing, I choose to be at home and happy.

I am fortunate enough to have that option.

It was difficult to convince the hospital and the Consultants, it helped that I am a scientist and know what is going on.

I am also fortunate that I can still have a certain quality of life, I can still move about.

I feel for you, it must be horrible.

What is not good is being in a hospital bed staring at the ceiling, it is soul destroying.

It is her choice, days in your life or life in your days.

I have palliative care medicine, Nozinan, for when things get very bad.

https://www.medicines.org.uk/emc/product/1429/pil

I also have oromorph and clot buster medicine.

She is intelligent, articulate and knows what is happening.

It has to be her choice and she needs to be supported in it, no matter how hard it can be.

Ask her what she wants and do it, she needs that level of support.

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:023:

It’s a good choice/solution when the end is inevitable. My wife was put in a room of her own at the hospital and ostensibly forgotten about, except when the nurses came in and altered the level of morphine going into her arm by an automatic pump. The whole of my family was there in attendance keeping her company, and although she couldn’t move or say anything, I like to think that she had some comfort in her last few days knowing that we were all there for her.

Contrast that with the care at the local Kirkwood Hospice when my son-in-law was dying from terminal lung cancer. He was washed and fed every day and had an attached garden at the side of his room where we could take him in a wheelchair to sit in the sun. He was even allowed the occasional beer - all very civilised. He slipped away peacefully, free of pain after prolonged palliative care rather than by excessive use of chemicals.

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Thanks for that, Judd, I’ll get that looked into!

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My late Dad ended his days in a Hospice and it was the best place, just at the correct time for him.
I never saw him there and said my farewells from the family home. He had lots of support from the Macmillans Nurse early on…so all in all he had the best care he could have had.

My very close friend lost her life in March 2005 to Pancreatic Cancer, it hurts to this day.
She ended up in a London Hospital, but living in Hastings East Sussex it was difficult at first.
She had just seen her newly born 1st Grandson, where she visited with her Husband at the Local Hospital that she had recently come out from.

Her two older sisters moved into a bedsit near East Croydon Station and made the trip every day to the London Hospital. They spent there lives now looking after her.
I was to visit her, but she said she was too unwell…I do realise she wanted me to remember her as she was…She wrote two letters to me and those I treasure.

She had a lot of home support for the last few weeks of her life at home.
.She wanted to be just at home again.

Support is what is needed for anyone going through these terrible traumas. Family of course, but professional care is without any doubt what one needs…
I really do feel for you all.

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Ted, am really sorry to hear about this.

My thoughts are with you and your family.

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Ted my heart goes out to all of you but that does not help at all.

I have had two recent experiences that each have their own benefits and area to learn.

I think I would suggest a hospice or home. Hospice do in care and out care but their knowledge is immense and support fantastic.

Although home is a hard hard slog no getting around it for all involved both those needing the care and those giving the care.

My Mom passed away at home in her own bed and peacefully with family around her I would not change that for anything but she did not require pain relief or anything; she simply shrank before our eyes after Dad died. She was 87. At our request a lady from the local hospice came out and said it was “too late and not in her best interest to move Mom there” but offered total support and medical assistance that made the next two days happy. (odd I know but true) I had taken leave of absence to care for Mom but t is remarkably hard going even with support from my brother sister and their families. We all struggled the toll is immense.

My very best friend forever;died last year at 53, over the last 6 years she had breast cancer twice and part of a lung removed due to cancer but returned to work each time then after a routine eye test in Feb 2020 she was diagnosed with brain cancer. Had an operation to remove part of skull to reduce pressure Feb 2020. On March 12th she went back home her son (30) my Godson gave up work to care for her she needed support walking and then lifting etc; her daughter (26) moved back home to help then lockdown and Net decided to stay home rather than hospital. Due to the restrictions and immense fear no one else entered the house bar those three and luckily her daughter could work from home during the worst of it due to Covid (so ups and downs). My friends sister and family and myself and other friends took shopping and had chats from outside in the warm weather through the windows she was on chemo for about 4 months then they stopped everything at her request for same reason as your DIL she wanted to spend time with “the children” not in a fog. We spoke twice a week for hours on the phone both Wednesdays and Saturdays every week. She was due for a scan Dec 1st and went to the hospital where the nurse who first saw her called someone and they said she would not last 24 hours and passed away an hour later. She had a plan in her head that should things get beyond the “children” we were to move her to a hospice but circumstances did not permit that. Maybe with less worry on covid she would of been admitted to one earlier but you cannot tell, do the best you can while you can and always with love.

My heart as I say breaks for you all such a hard hard situation, but I think contact with a hospice would be enlightening to all of you they can aid at home as well as in care. My love and best wishes to all

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Thanks, Diane, for your reply,

The more I’m seeing , on here, the more I’m realising how many people are in, or have been in, the same situation.

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Thanks Kaz!

Much appreciate your reply.

Never gave it all enough thought before this, my wife had a different end to life, almost 10 years ago. when I woke up, one morning, and realised that she had passed away in the night.

I thought that was pretty bad, but, hopefully, you’ll understand me when I say that going, that way, was a blessing, although I didn’t think so at the time.

It’s comforting to know that others have found their way through all this.

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Thank you, Dex!

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So very sorry to read about your daughter-in-law. Cannot offer any advice, only my sympathy for you and your family.

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