Experiences welcomed

NormsGrandaughter

New member
Nov 18, 2021
3
0
Hello all,

I wonder if you could help me with your experiences please as I am getting little from care professionals. My grandma as suffered from dementia and alzheimers, mixed type for around eight years now. She has resided in a care home for just under 3 years. We received a phone call back in September to say that she was being placed on end of life care, and then a phone call again last Monday to say she had deteriorated quickly. I have visited her almost every day since and I have seen a steady decline. She is very tired and sleeping a lot of the time, unable to communicate and rapidly loosing weight. She is having mainly porridge and soup, some days eating and some days not. Her fluid intake is mainly ice lollies and sometimes fortified milkshakes.

She is given haloperidol for pain sometimes (but not everyday) and has morphine on hand should she need it. These medications were prescribed over the phone and no doctors or nurses have seen her since we received the phone call to say she was deteriorating last week.

It would be helpful to know your experiences, is this really the end of her life?
 

kindred

Registered User
Apr 8, 2018
2,937
0
Hello all,

I wonder if you could help me with your experiences please as I am getting little from care professionals. My grandma as suffered from dementia and alzheimers, mixed type for around eight years now. She has resided in a care home for just under 3 years. We received a phone call back in September to say that she was being placed on end of life care, and then a phone call again last Monday to say she had deteriorated quickly. I have visited her almost every day since and I have seen a steady decline. She is very tired and sleeping a lot of the time, unable to communicate and rapidly loosing weight. She is having mainly porridge and soup, some days eating and some days not. Her fluid intake is mainly ice lollies and sometimes fortified milkshakes.

She is given haloperidol for pain sometimes (but not everyday) and has morphine on hand should she need it. These medications were prescribed over the phone and no doctors or nurses have seen her since we received the phone call to say she was deteriorating last week.

It would be helpful to know your experiences, is this really the end of her life?
This is so painful for you, watching her decline. All my sympathy, obviously we can’t know if it’s end of life and sometimes folk do rally for a bit. I can only tell you that from my experience with my husband, end of life involves sleeping, not eating or drinking, then having more and more difficulty with breathing.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hi @NormsGrandaughter and welcome to Talking Point
Im sorry to hear about your Grandmother.
When someone dies from dementia it is not a quick thing. The body closes down slowly over days and weeks. It does sound to me like she is probably at End of Life, but it is impossible to say how long this stage can last, which is probably why you are not getting much advice from the professionals. It is also possible that she has rallied somewhat since she was considered to be EOL, I was told 3 times that mum was at EOL, only for her rally each time. There are physical changes that happen right at the end, like stopping eating and drinking entirely, changes in breathing so that there are gaps between the breaths, mottling of the skin, the limbs becoming cold and passing into a semi-comatose state.
You have not mentioned any of these things, so I am guessing that she is unlikely to pass away imminently, but, as I said - its impossible to know how long this stage will last.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
Just to say, haloperidol is a pretty heavy duty anti-psychotic, not a painkiller. It is usually given for extreme agitation, delerium or psychosis, often used for people with schizophrenia, Tourette's, etc. It doesn't sound like your mum is very agitated so I would question why she is on this drug.
 

karenbow

Registered User
May 24, 2021
106
0
Hello all,

I wonder if you could help me with your experiences please as I am getting little from care professionals. My grandma as suffered from dementia and alzheimers, mixed type for around eight years now. She has resided in a care home for just under 3 years. We received a phone call back in September to say that she was being placed on end of life care, and then a phone call again last Monday to say she had deteriorated quickly. I have visited her almost every day since and I have seen a steady decline. She is very tired and sleeping a lot of the time, unable to communicate and rapidly loosing weight. She is having mainly porridge and soup, some days eating and some days not. Her fluid intake is mainly ice lollies and sometimes fortified milkshakes.

She is given haloperidol for pain sometimes (but not everyday) and has morphine on hand should she need it. These medications were prescribed over the phone and no doctors or nurses have seen her since we received the phone call to say she was deteriorating last week.

It would be helpful to know your experiences, is this really the end of her life?
hi i am so sorry to hear about your grandma, i was told mum was end of life by an emergency doctor when he was called to the nursing home mum was in because the nurse was concerned - i was shocked because although mum was seriously ill it was hard to see it was end of life- mum was just like your grandma symptom wise but not eating or drinking at all- mum had one visit from the gp in the five weeks she was end of life and i found it difficult to understand the lack of input from medical staff so also queried that it was really end of life, but the doctor was correct - mum gradually got worse with all the end of life symptoms starting - poor breathing etc - i really think when it is end of life all that can be done is make sure the correct meds are in place and wait and watch- it is so painful - mum has now passed away it was her funeral on tuesday- i was a few minutes too late to be with her but i was told it was peaceful and like your grandma there was medication available if needed- i would take what you have been told as correct but when this will happen is only a guess- my thoughts are with you , it is awful but it sounds like your grandma is being well looked after xx
 

MartinWL

Registered User
Jun 12, 2020
2,025
0
67
London
My mother is is a similar state, GP and care home nurse agree that she is EOL and she is eating nothing. She has no strength left, and I am fairly sure the end can't be far away. She has rattled breathing too. All we can hope for is a peaceful end to a long life.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
My mother is is a similar state, GP and care home nurse agree that she is EOL and she is eating nothing. She has no strength left, and I am fairly sure the end can't be far away. She has rattled breathing too. All we can hope for is a peaceful end to a long life.
Im sorry to hear this martin
It certainly does sound like the end will be soon. Care homes are usually very good at keeping people pain-free and comfortable at end of life
xx
 

karenbow

Registered User
May 24, 2021
106
0
My mother is is a similar state, GP and care home nurse agree that she is EOL and she is eating nothing. She has no strength left, and I am fairly sure the end can't be far away. She has rattled breathing too. All we can hope for is a peaceful end to a long life.
My mother is is a similar state, GP and care home nurse agree that she is EOL and she is eating nothing. She has no strength left, and I am fairly sure the end can't be far away. She has rattled breathing too. All we can hope for is a peaceful end to a long life.
so sorry martin , like canary said it sounds like it will be soon- such familiar symptoms - thinking of you and your mumx
 

NormsGrandaughter

New member
Nov 18, 2021
3
0
Hi all,

Thank you for your responses. I am so sorry to hear of your losses and Martin, I am so sorry to hear of your mum. I hope her passing is as comfortable and as pain free as possible.

Unfortunately my grandma has deteriorated again today, she hasn’t woken again at all and is now refusing any food or liquid.

xx
 

NormsGrandaughter

New member
Nov 18, 2021
3
0
Hi all,

I just thought I would take some time out giving you an update on my grandma. She is still with us, every day we are gearing ourselves up for another day of sitting at the care home and playing a game of “wait and see”.

On Friday night, I was sat with her quite late on, when she began to seizure, morphine was instantly administered and she slipped back to sleep. On Saturday, I was sat here when again she began to seizure, District Nurses were called to explore the possibility of inserting the syringe driver. They refused to do anything as she wasn’t agitated and they “can only treat the symptoms they witness”. We were just told that this is part of Gran’s dying process. On Saturday night, I received a call from the care home in the early hours to explain that Gran had suffered 2 quite large seizures, the District Nurses had been called back and they had given her an injection to relieve the pain and agitation. This seemed to work, until yesterday evening when I was sat at her beside and she began to seizure again. She has not yet seizured today *touch wood* but she has unfortunately choked on her secretions, which luckily the staff at the care home were able to assist with.

All this and no food or fluids for now 4 days at least, and she is still with us and still fighting. Life is so cruel and witness my gran go through this is by far is one of the worst times of my life.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
(((((((((((((((((((((((hugs))))))))))))))))))))))) @NormsGrandaughter

Sometimes people with dementia can surprise you with the length of time that they cling to life. Dementia is tenacious even in death.........

Make sure you eat and sleep. Hang on in there - there will be an end