Follow
Share

My father has been in hospital for 2 months already. He was admitted to have a permanent catheter inserted and from there on it went downhill. He contracted a "superbug" and was kept in isolation. From there he was admitted to ICU and put on a ventilator for more than a week. He was eventually discharged from ICU to another isolation ward. He is very confused at times. His urine is dark, like tea. He refuses food and water. He has during the past few days, at numerous times, said he wants to die. He is very emotional and cries often. His feet, legs, arms and hands are very cool to the touch and there is mottling on his feet. His breathing is very laboured and he has a very wet cough. He cannot seem to clear his throat either and coughs with difficulty. The doctor told us to "let it take its course". We cannot get a straight answer from the nursing staff either. His speech is also slightly impaired. We are very concerned for him as it would appear that they are keeping him comfortable, just waiting for him to die. He has COPD, heart failure, prostate cancer as well as being asthmatic. I have read and re-read articles about end of life and many of the things they mention, I see in him. It is so sad to see him suffering the way he is. We have told him that he may go, we will all be fine.

Find Care & Housing
I just finished watching a lecture....Long term hospital+poor response to rehab+ 4 other chronic conditions= 97% mortality within the coming year.
Why not request a care plan meeting. Dad is suffering. Request a palliative care specialist. I am not sure why you are not getting answered. Stop asking nurses who may be limited on what they can say. A doctor or assigned APRN needs to give this news unless there is another family spokesperson you do not mention.
Helpful Answer (1)
Reply to MACinCT
Report

Oh boy, I could post an article of my own about how the medical community has messed up many of my family members and never given us a straight answer but I will hold back for now. :) The one and only time I got a straight answer was from a nurse- AFTER my uncle had passed. They did, however, call us in plenty of time for us to come to his bedside before his passing.
You really have to be your loved one's advocate and do your own research. What I have done in the past is go to the doctor with what I found and what my thoughts were. I still didn't get an answer, but the silence told me everything that I needed to know.
With my past experiences with dying LOs at the end of life, it was very similar to what you described and they could very well just be keeping him comfortable. Your dad's feet and legs being purple reminded me of what I was told many years ago- that people die from the feet up.
((Hugs)) to you!
Helpful Answer (2)
Reply to ybd311
Report

Have you tried asking the question from a position of knowledge. "I read where these symptoms are an indication that he is actively dying, is that true? Is he receiving all the care possible to make him comfortable at this stage."

It is baffling that medical professionals can't speak openly about the signs of a body dying. It doesn't have to be a frightful experience, it can be beautiful and even more so when everyone that loves him has a chance to come say goodbye and wish him well on his next journey.

May God grant you grieving mercies and comfort during this difficult time. May your father pass peacefully on to his next journey. Hugs!
Helpful Answer (4)
Reply to Isthisrealyreal
Report

I have honestly not heard in this day and age of a hospitalization this long. You do not give the age, but both heart failure and COPD are very deadly. I think you should look into a palliative care consult now, and think toward hospice. You are reading the cool legs and the mottling correctly. These are signs that hospice nurses tell families to note as end of life approaching. His expresses wishes now should have you honoring his wishes for comfort and acceptance he may not be able to go on. I do not at all understand the medical community not discussing palliative care and hospice with you. Not at all.
Helpful Answer (2)
Reply to AlvaDeer
Report
Tothill Jul 10, 2019
Alva, OP is in South Africa, but even here in Canada, my step dad was in the hospital for 6 weeks before his death in November. After 4 or 5 weeks there was discussion of him going home with Palliative Care, but there is no way my Mum at 84 could have managed.

Locally there are only 3 hospice beds in nursing homes and all were occupied. There has been a huge fundraising campaign for a Hospice House with will be build soon and have several beds available.

HSB, it could be that the nurses are not allowed to answer questions and must refer family to the doctors. Mum too had a heck of a time connecting with s/d's doctors. She had to catch them when they did their rounds in the morning.
(1)
Report
See 1 more reply
I’m sorry to hear of your father’s condition and your frustration in getting news from the hospital staff. I attended a conference a couple of years ago and sat in on a session with doctors where end of life care was discussed. Statistics were given stating that the vast majority of doctors and other medical professionals do not discuss end of life with their patients or their families. The topic is mostly avoided. It’s even avoided in medical school training, though that’s slowly changing. Because it’s an uncomfortable topic even those who frequently deal with it, avoid it, so unfortunate for patients and families who need and deserve answers. The sesssion I attended gave tips for doctors to stop evading the topic. Hopefully this will improve over time. Meanwhile, your father is blessed to have you and I wish you rest and peace
Helpful Answer (3)
Reply to Daughterof1930
Report

From many of the signs you describe it does sound like he is "Actively Dying" or at End Of Life.
Have you contacted Hospice? They would help out.
I would find the Hospital Social Worker or Patient Advocate and have a sit down talk with them to determine what exactly is going on and spell out what course if any will be taken.
Hospital is not a great place to be in any case and if possible to discharge him to Rehab might be a good option if he can be discharged. Or if he is in fact at End of Life discharge to home where he can be comfortable and with family without the Hospital noise and the possibility of picking up another infection.
Helpful Answer (3)
Reply to Grandma1954
Report

Where in South Africa, HSB? As long as it's a reasonable-sized city I would expect the care to be more or less comparable. The only thing that might sound strange to American ears would be jelly and custard :)

So your father is now in an isolation ward. Are you happy that the essentials are being covered, and that he now is being kept as comfortable as possible? Variable pressure air mattress, mouth swabs, repositioning and so on? Is anything being done to alleviate his symptoms? If there is no air mattress, it's important that your father is regularly repositioned - but you and your sister are both experienced carers, I'm sure you already know all this.

I don't know what to suggest as far as lassoing a doctor goes (I'm in the UK, and goodness knows we have our own issues). When you say they do appear as if by magic whenever there's a billing issue, does that mean that your father's hospital fees are covered by insurance - his own, or a state program? I'm just wondering if there could be any leverage at that end.

Given your father's pre-existing conditions, it would perhaps be best to "hope for the best, prepare for the worse" but bearing in mind most of all what is really best for your father. Do you have access to pastoral support and counsellors while you're all going through this?

I think if I were you I would be very frank with the senior nursing staff: look them in the eye and say simply "please tell us what we need to know. It's important to us to be prepared." If they still duck the question, perhaps ask for a hospital chaplain to attend - not only for moral support, but also because these people are trained and experienced in communication.
Helpful Answer (4)
Reply to Countrymouse
Report
HSB1963 Jul 8, 2019
We live in Johannesburg. Yes, we are happy with what they are doing for him so far, except for the fact that they are not forthcoming at all when we ask for updates, their answers seem to be rehearsed! He does have the mattress (he says it feels like he is sleeping on marbles) and the nursing staff do reposition him and rub lotion into his skin. My father is on a medical aid and a very good one at that, he was a policeman for 40 years and stayed on the medical aid even after retirement, so the chances of their bills not being paid is remote! Yes, we do have access to ministers/pastors who can step in and assist. I may do just that, ask them to be available when we discuss my father's condition. Thank you.
(3)
Report
Thank you for your responses. I forgot to mention in the original post that when I visited with my father last night, he asked me for cheese and milk. I found this a strange request as just the previous day, he pursed his lips and pulled a face when we tried to give him water and juice to drink. He would not even eat jelly and custard, his favourite dessert!!

My father's legs from his knees down are purple and his feet a very dark purple. I asked the ICU sister why this happened and if it was due to circulation, she said that it would be best to ask the doctor. We do feel as if they are not telling us what we should know. We also believe that something happened to my father during the two days in the isolation ward prior to his hurried transfer to the ICU. He was very confused the day they transferred him and was making growling noises and using his arms to make lunging gestures, as if he was seeing something we were not. We alerted the nursing staff to what we were seeing, the doctor, who was not on call that day, ordered immediate bloodwork and they then transferred him to ICU. It was extremely upsetting to see him behave in that manner. He went from being okay to very ill in a matter of a few days. We are at our wits' end at this stage, it is almost impossible to speak to the ward manager, hospital manager and most importantly the doctor. The only time when they are visible is when they need to discuss outstanding accounts which have not been paid by his medical aid!!! (Apologies if any of this sounds strange to you, we are from South Africa and do not use the same terms as United States etc.)

Thank you for your feedback, appreciated.
Helpful Answer (2)
Reply to HSB1963
Report

Have doctor's recommended hospice? This is very hard for family and it does sound like his time is near. Be there for him, hold his hand, talk to him. I am sorry you and dad are going through this.

Does he have a DNR in place? Last Wishes? POA?
Helpful Answer (1)
Reply to gladimhere
Report
HSB1963 Jul 8, 2019
We do not have DNR in South Africa. Thank you for your kind words.
(0)
Report
Is hospice involved?
I'm so sorry that you are going through this hard and sad time.

Ask the nurses if they have a med to dry up the secretion in his throat, and swabs to keep the inside of his mouth moist and comfortable. (((((Hugs))))).
Helpful Answer (2)
Reply to BarbBrooklyn
Report
HSB1963 Jul 8, 2019
No, my sister and I are his caregivers. She takes care of him during the day and I take care of him at night (after work) and over weekends (when he is not in hospital).
(0)
Report
HSB, I'm very sorry to read about your father.

When you say, you can't get a straight answer from the nursing staff... what sort of information do you feel you're not being given?

This is a terribly sad and difficult time for you and your family. We're here and listening if there's anything we can say to help.
Helpful Answer (3)
Reply to Countrymouse
Report
HSB1963 Jul 8, 2019
Please refer to my latest post above, thank you for your response, appreciated.
(0)
Report

Ask a Question

Subscribe to
Our Newsletter