End of life care - what to expect

Hospiscare do an excellent booklet called "understanding the changes that may occur during the dying process" highly recommend you read it. I realise you are not hands on caring now but always good to know.
I am sorry you are in this position, for me the main thing was always that the care home keep them comfortable and pain free. I am concerned that your mother has pressure sores, no one should have those with proper care. They are avoidable with plenty of washing and creaming every time the pad is changed, plenty of turning, a pressure mattress and a hospital bed. All this should be in place by now. What did the hospital say about her pressure sores? They are extremely painful have you got Hospicare involved? They are the best for skin care and care in general and can still be involved despite your mother being in a care home. The main outcome I would want from the doctor's assessment is a referral to Hospiscare and medication prescribed to keep her pain free at all times. I would also expect him to prescribe an "just in case bag" which should be ready when she needs it. If you don't know the Just in Case bag contain the driver which she can suddenly need with short notice and the pharmacists do not always stock them as the run out of date very quickly. Please make sure the nursing home keep up to date with the date on the bag. The medicine inside can have different dates on it all so needs to be checked individually regularly. I have sadly been through all this 3 times but all of the death was in my home so I was obviously extra vigilant. Hope you find the strength to get through this difficult time.

The manager of the home my mother in law was in rang to say that she was deteriorating, and what did we feel about her going to hospital. I knew that she had always hated it in hospital, and although she sometimes complained about some of her carers (She complained about them giving her a birthday card they had made specially!) I felt she would be happier staying in her room, being looked after by people she knew. She was barely conscious at that point and died quietly a few days later.

My husband was already in hospital when his consultant told me that he had now developed a condition that was unsurviv.able He said "I can't treat him but I can look after him" and that was what he did for the final week. He had signed off the DNR before he spoke to me, "Because he's been through enough. I don't want someone jumping on him trying to start his heart" It sounds strange, but it was a very quiet week, just sitting with my daughter ,drinking the cups of tea we were brought. When he died it was so peaceful I nearly missed it (Typical! He would have said)

Hi,

Thank you , especially the people who have shared their own losses for which l send 💐.

I spoke with her doctor today a lovely man, who listened to me and explained his view which matched mine.

The pressure sores are not healing as mums nutrition is very poor, (She is mainly refusing food despite the nursing home encouragement).

I am now at the point of researching burial costs/plots funeral directors and what l need to do.

Amongst all this l am moving house in 20 days!

My thanks to everyone for comments and listening to me - helping me tremendously deal with this situation but also the useful suggestions .

My father had a massive stroke and ended his life in hospital. We , my mother and I asked that he be not resuscitated. He had gentle but detached care. My mother had hospice at home. Wonderful. The nurse who was with her when she died , utterly marvellous. My father was of course unaware of his care, my mother quite bright until she slipped into a coma, somehow enjoyed her care. There was a lot of laughter with the nurses and the odd Sherry. We had choice with Mumbut not with Dad

We have a DNR in place for my Mum which was agreed by me with the home. Unless she is in pain she will not be taken to hospital either. She will have antibiotics for infections like pneumonia but won't go to hospital for intravenous drugs or oxygen. She will then go onto end of life care with the drugs needed to make her comfortable til the end.

Aww so sorry sad mum it is a deeply upsetting time for everyone. My mum was in a care home seemingly well, when one afternoon she took herself off to bed, went to sleep and never really woke up again. I knew that day this was the end.
The Dr decided to put her on end of life care she was 92. She continued to wave her arms and move around a little but wasn’t really with it.
After six days I felt she might be in pain due to a recent fall so it was agreed, and they started her on a syringe driver she passed away peacefully 18 hours later.
I really hope your mum has the best care possible. If you’re in doubt about her care or feel she may be in pain ask to speak with the Dr asap. Take care of yourself too.

When my late OH was on terminal care he died very peacefully and out of pain. He had pain relief and mild sedation whenever he was even minimally agitated; he was turned regularly and had good mouth care to help not feel too thirsty. It was a very positive decision when all the striving to keep him alive stopped.

Keeping quiet - thankyou for your your sensitive and caring posts .
Sadmum7 my thoughts are with you and your Mum . 💐💐

Treatment of pressure sores is unsuccessful when the patient is near death- the process of dying focuses on preserving the vital organs internal organs and the skin becomes much more susceptible at this time.

This should not be an excuse for poor care obviously, but an acceptance that the skin is not going to recover at such a late stage.

Shocked re your Mum's pressure sore. Has the home given an explanation why treatment is unsuccessful? Definitely ask GP about that. End of life care will generally cover whether or not your DM would accept hospital, Hospice admission. If any offer of treatment eg chest infection would be accepted. Whether DNR would be appropriate, even who your DM would like to be with her, all will be a lot easier to cover if you have care POA. Such a hard time for you.

Both of my parents died in the hospice environment ( a year apart) where the care was exemplary! Neither could speak towards the end of their lives but I know they heard us ! I massaged their hands, kept their mouths moist and the staff ensured they were pain free, which was a blessing! They had dignified deaths with the care they were entitled to! I couldn’t have asked for more ! They both chose to go into a hospice due to both having terminal cancer so were capable to make informed decisions !

We had an agreement with dad’s home that he wouldn’t be sent back to hospital. A dear friend recently died in a nursing home. They kept her clean and warm and comfortable. My mum died at home. Her choice. It was the best death it could be. Make sure the gp prescribes an end of life package of drugs. We didn’t need them but make sure they are available. Also, our palliative care nurse was able to tell us when mum was going to die. For a few days it was ‘it won’t be today’ and the one morning it was ‘I don’t know what time but it will be today’. Sit with your mum as much as you possibly can. My heart goes out to you.

My mother died after a month in a coma, barring a few minutes one afternoon.

My father, a retired GP, said to my mother's consultant one afternoon, " I shall soon have to make a hard decision." The consultant replied kindly, "We are not there yet, but I am not interested in prolonging a patient's death throes unnecessarily. I treat the living, as long as there is some quality of life."

Written down this looks harsher than it was meant, as you cannot hear the respectful tone of voice it was said in, but I felt then, and still do, that the sentiment is worth considering and following.

When his time came, my father fought against pneumonia for three days, then gave up. His nurse agreed with my sister and I that the important thing was to ensure he was in no pain. He was 89, and for the three months preceeding his death, it had been plain to us all that he felt life had nothing more in store for him.

Obviously, your mother's dementia makes the situation even more distressing for you, and it is no help that like my mother she apparently never was willing to discuss the final phase of her life.

Talk frankly to the staff, listen to their evaluation and decide what you and they think is best.

As a total outsider, my feeling is that your mother is better off in surroundings she is accustomed to, even through the fog of dementia than in a hospital's pallitative or intensive dept.

It is very hard to watch our parents die, but the time leading up to their actual death is in my experience the worst part of the experience.

Come back if you need us.

I agreed with GP to DNR, no hospital, meds ready, from memory for pain, anxiety and vomitting. Basically so she was comfortable and not distressed.

keepingquiet

When pressure sores no longer heal it is a sign that the body is shutting down.
This happened to my mum. Also no interest in food, wanting to sleep and not talk are all physical signs that the body is preparing for death. This is difficult to accept but it is a natural process.
End of life care should be just that- care. Keeping comfortable, clean and pain free, offering some small liquids or any food they can tolerate but above all being spoken to and gentle touch and acceptance that what is happening is normal and inevitable. Keeping the room calm and quiet is also important.
I have been in this situation both professionally and personally- my thoughts are with you and your mum at this very special time. It should be peaceful and worry free at this advanced age and I hope she gets the care she needs to make the transition.

What a beautifully written post.

When pressure sores no longer heal it is a sign that the body is shutting down.
This happened to my mum. Also no interest in food, wanting to sleep and not talk are all physical signs that the body is preparing for death. This is difficult to accept but it is a natural process.
End of life care should be just that- care. Keeping comfortable, clean and pain free, offering some small liquids or any food they can tolerate but above all being spoken to and gentle touch and acceptance that what is happening is normal and inevitable. Keeping the room calm and quiet is also important.
I have been in this situation both professionally and personally- my thoughts are with you and your mum at this very special time. It should be peaceful and worry free at this advanced age and I hope she gets the care she needs to make the transition.

1. Not providing unnecessary nutrition but keeping lips moist for comfort and fluids if she can take them
2. Pain relief doses that will ensure pain is absolutely minimal
3. Company and gentle talking - can you or others sit with her regularly? Talk about memories ; people she knew and loved etc
4. Playing music she liked in the background
5. Things like gentle hand massage or foot rubbing can give comfort and reassurance
6. Bedsores wont heal at this point but focus on appropriate care to avoid unnecessary pain and keep comfortable

All of the above happens in a hospice. The home should do this too.

It might help to search for end of life care best practice online but these will include when still able to discuss with the dying person. Might still be helpful though.

Main thing to keep in mind is your mum as she WAS, her interests, likes, dislikes, life etc and on that basis make the care as centred on HER as a person alongside pain relief needs etc 💐

Thanks everyone for comments much appreciated.
Mums pressure sores came from when she was in hospital (we were not told she had them) it was when she transferred to the nursing home that it was picked up. They have the tissue viability nurse involved but it is deep. Her not eating is not helping.

Mum has always refused to discuss her passing , so no plans as such, she is on palliative care and will not return to hospital, there is also a DNR in place.

She only speaks with a few words now, does not recognise family.

Our children and grandchildren went to see her last week, she did not know them , but it was ‘good’ for them to spend sometime with her.

I am very mucch on edge and take a deep,breath when the nursing home number comes up in my phone . ( They update me regularly )

Thanks again for comments, suggestion and taking the time to read my ramblings.

On a practical note, the care home might ask if there is a preferred undertaker to contact when the need arises.

grandMattie

When he was diagnosed as terminal, he signed a DNAR. I also knew his wishes.
He was kept comfortable and slipped away at home as he had asked.
Personally, if I reached the state your mother is in, I would certainly have wanted not to have treatment, just the necessary palliative care.

Same.
My mother went on to 97 with advanced dementia, and when the end was looking likely, I know very well what her former self would have said : ‘For heaven’s sake just let me go.’
She was in a care home although end of life care wasn’t needed for long, I couldn’t fault it.

I would say the same for an aunt (late 80s) gin a different care home, also dementia, who was refusing food and drink after the umpteenth UTI (she was prone anyway) and a decision had to be taken, whether to send her to hospital for drips, etc. or leave her where she was, for palliative care.

It was down to me, so I could only ask the lovely GP what he’d do if it were his much loved aunt.
He said he’d leave her where she was, where they’d look after her very well.
I sat with her a lot during her last days. She continued to refuse food and drink, slept nearly all the time, and drifted away quite peacefully after about a week.

Very sorry to hear your Mum has pressure sores. This should not happen. My Mum was in a lovely care home for her last 3 years and never had a pressure sore and the Manager told me none of her residents ever had one and she had been there many years.

My Mum passed exactly as she wanted to there as they drew up an end of life care plan when she first went there.

Do you have Power of Attorney for Health and Welfare for your Mum?

When he was diagnosed as terminal, he signed a DNAR. I also knew his wishes.
He was kept comfortable and slipped away at home as he had asked.
Personally, if I reached the state your mother is in, I would certainly have wanted not to have treatment, just the necessary palliative care.

I had an end of life plan drawn up with my GP . We discussed whether I wanted hospital or hospice care , whether I wanted resuscitation . I carry a Respect form when I use hospital transport (I have stage 4 breast cancer ) to go for treatment, which I know is palliative. I have become more or less bed bound in the past few weeks so I now have extra carers coming in. Basically you need to decide whether your mother should stay where she is and should she have 'invasive' treatment to prolong her life.
Best wishes

I am very sorry to hear about your mother and hope that the next few days and weeks will go as you would all wish them to go. From my dad I was asked about a DNR form and also given an end of life form to fill out from a hospice stating his wishes. The question was did we want him to go to hospital for them to treat him or just to let him pass naturally. As a very religious person, my dad just wanted to pass and rejoin my mum in Heaven. He had stated that many times and did not want any end of life intervention apart from pain control. It was very sad but we remembered what he had said and wrote that out on the form. If you can imagine what your mum would have said in her younger days, it may help. You will need to discuss the detail of how they deal with end of life patients re all the personal stuff, cleaning, food, drink, checking on their condition. Letting you know when or if you choose to sit with her etc. Please be firm if you are dealing with any difficult medical staff and stand by your, your family's and your mum's wishes. Thinking of you all.