End of life care for my Father at home

[Sazzle1971]

Hello all,

About 3 weeks ago my father’s eating/appetite started to slowly decline until one day he refused all food and he has now been in hospital for over a week. He is at best having a couple of teaspoons of ice cream and mouthfuls of water a day.

The hospital have told me there is nothing more they can do for him and I have made the decision that I want him to come home for his end of life care (he lives with my husband and I).

We are now just waiting for everything to be organised before he can come home.

He has also had COVID during this time too.

I am told he has a life expectancy of approx. 3 months and will now be confined to a hospital bed in our home. His care is being increased to 2 carers and 4 visits a day and his meds will stop and he will be administered morphine by injection for pain relief and lorazepam to keep him calm. He will also come home with a catheter.

Has anyone been in a similar situation and can provide some practical advice? I’m going to get him things like flavoured milk, ice cream and mousses to try and encourage him to eat although when I tried to encourage him to eat today at the hospital he refused and didn’t have anything. I know I can’t force him and haven’t done so. His mouth is fury from lack of food and fluids - what can I do to improve this?

I work full time (from home) and work have been and will continue to be supportive. I guess I also want to know am I underestimating how much support he will need in between visits during the day and being naïve thinking I can continue to juggle everything. I do not have any other support outside of the carers (Mum died 2008 of Alzheimer’s and I’m an only child).

My main aim is I want him to be at home in familiar surroundings (he said 2 words to me the other day “home” and “Ebony” the name of my dog who he refers to as his best friend) and comfortable and not suffering but I can’t shake the thought that he is just starving to death and what a horrid way this must be to go. Also can he continue for 3 months eating little to nothing and a few mouthfuls of drink a day?

I know this is a bit of a jumbled message but anyone who can provide any practical advice would be very much appreciated.

Many thanks,

Sarah

 

[Jessbow]

I oubt he will last 3 months with no food or fluids.

people stop eating at the end of life because their body is shutting down, they rarely die because they have stopped eating.

Can you clean his teeth/Mouthwash/Those sponge lollipops?

My friend has just had her mother home to die- with support of Macmillan nurses . Carers 4 times a day and Macmillan overnight+ one of her daughters there 24 hours.
Sylvia lasted about a week, her funeral is today as it happens. Her daughter was glad she fulfilled mums wishes BUT found it very traumatic.

 

[canary]

Mum did not die at home - she died in her care home, but I still found it quite traumatic.
People with dementia can last for much longer than you would imagine - mum lasted 17 days with no food or fluid at all, although most people do not go that long.

Please do not think that she is starving to death, she is not, she is dying from dementia.
When someone dies from dementia their body shuts down slowly over the days and weeks. As part of this shutting down process the body can no longer process food or fluid so they do not feel hungry and refuse it.

They do not die because they stop eating - they stop eating because they are already dying

 

[Duggies-girl]

I cared for dad at his home when he died. We had the hospital bed for 3 weeks and one carer twice a day which was not enough. 2 carers 4 times a day will be better but there will still be times when it is just you and your husband. My dad had to use a commode which my husband and I found quite difficult because dad was very frail and we were frightened to help him on it although we managed somehow. In hindsight we did not get enough help. The carers were great but one carer twice a day meant that almost everything fell to me.

Dad ate nothing during this period other than an occasional teaspoon of ice cream and the odd sip of fiizzy drink, he just faded to skin and bones which was very difficult to watch and I still don't understand how a person can survive for so long in this dreadful state but I very much doubt that your dad will last for 3 months without food and drink.

Dad had dementia and cancer and was on oral morphine that seemed to work most of the time. When dad needed a higher dose at the end we found the district nurse to be unhelpful although she redeemed herself on the morning that dad died by washing him and giving him clean clothes.

Dad was happy most of the time because he didn't know what was happening, his short-term memory was gone and he thought he was fine. A couple of time he had a sort of realization and asked me, where did this bed come from and why was he in it so I would tell him the truth and he accepted that he was dying but then forgot again straight away. I found that the hardest thing.

Dad died one morning in his own home with me holding his hand and talking to him, it was very peaceful and quiet so he got what he wanted. For me those last days were harrowing and I prayed for dad to die everyday because it was difficult to watch and very unfair on my poor dad. It was a huge relief when he did go but I was heartbroken at the same time. I found the whole experience very traumatic and my emotions were all over the place.

I am guessing that your husband is supportive (I don't know what I would of done without mine) and will help you as much as he can because you will need help even with carers. We needed someone with dad all the time and we slept in the same room. Take whatever help you are offered because you will need it.

I am glad that I did it but I had no experience of nursing someone and basically just muddled through. I needed more help, more carers and more time to walk away to take a rest and really I would have liked someone to tell me exactly what I should be doing and just take over once in a while. The carers were great and showed me how to do things the easier way. Things like moving the bedsheet instead of trying to move dad when he slid down the bed, all little tips to make thing easier were helpful but basically I just needed more help.

The hospice applied for CHC for dad and it was granted for those final weeks but that was neither here nor there and made no difference to us but it may be worth asking about that.

Would I do it again, I suppose I would if it was a loved one, what else could I do. It's hard but it will be over eventually.

Wishing you lots of strength and sending hugs.

 

[Shedrech]

You might ask your GP for a referral to Marie Curie Nurses @Sazzle1971 they may be able to offer you support (they are there for all those at end of life)

Do ask about CHC funding before your father is discharged

 

[Jazzmax]

Unfortunately my partner seems to be headed there now. Having had a week in hospital with Sepsis and Heart Failure, they sent her home with Covid, which I then got (day 8 and still positive). 3 days before she went in hospital we had a hospital bed delivered and gliding sheets and it has made a big difference. Although she regularly manages to turn herself sideways and lies with her legs dangling over the rails! She has had her care escalated to 2 x 4 times a day. They change and clean her and reposition her in the bed, in the meantime I am on my own.

The eating and drinking is a nightmare. She has gone from a salty savoury lover to sweet eater, which I believe is normal for dementia. Having quizzed everyone I speak to, I am now trying baby food pureed fruit, baby meals are too bland and low calories, kids smoothies, custard, ice cream, yogurt, Ensure and Maltesers. I have tried tinned fruit, little pieces at a time, for her to either chew or suck on. Most of these she wouldn't touch before. I have bought a blender but not very successful. I worry all the time whether she getting enough to eat and drink. Sometimes she won't open her mouth for me to give her anything. It is very frustrating.

We now have a DNAR form in the house, not that I need it, but for the carers/District Nurses.

I hope you all find some peace at the end. I know it's coming but dread it anyway. Remember, you can only do your best. Much love ❤

 

[Lynmax]

I was very lucky ( odd way to put it) that Mum died very soon after refusing to eat or drink. She was in a care home and had not been eating or drinking well for a few months, becoming dehydrated and needing hospital treatment for IV fluids.

After the second hospital visit, it was agreed with her doctor and the care home that she would have no more hospital treatment as they was just adding to her problems. District nurses visited her regularly to treat bed sores and would be able to administer any necessary end of life meds.

I was phoned on the Friday morning to say that Mum had been very tired the previous night so went to bed early. She’d had hourly checkups through the night and slept well until 7am when the day carer noticed that she was not responding as she normally would in the morning so they called her GP. I waited at home until the doctor had seen her, not sure why I did that, I could have gone to the home straight away as it was only 15 minutes away. I did phone my brother and sister to tell them about the GP visit.

At 1.15 pm the doctor phoned me to confirm that we still wanted no hospital treatment and told me that mum was very ill, she had started vomiting dried blood, a classic sign of bleeding in the stomach due to lack of food. He was going straight back to prescribe the end of life meds and agreed that we should go straight away - at the time due to a d and v outbreak, only one visitor was allowed but obviously that did not apply to us.

By 2.15, all three of us were there and mum dies, very peacefully, at 2.30pm, before the district nurses had visited, the drugs were not needed, mum was not in pain, just sleepy until her breathing slowed down and stopped.

So, it might not take long at the end, mum was probable only about 24 hours with no fluids but her intake had been significantly lowered for a few weeks. The carers made no attempt to give her a drink that final day, they just used a sponge to moisten her lips and tongue.

I’m grateful that it was not a drawn out death but I found it very difficult just sitting by her bed even for such a short period of time. I always said I did not want to watch her die or see a dead body but in reality it was the right thing to do and not as upsetting as I had thought.

I hope your father has a peaceful ending at home with you close by.

 

[Sazzle1971]

Thank you all for sharing your experiences of similar situations. Sadly I did not get to bring my Dad home and he passed away in hospital this afternoon. I so wish he could have spent his last few days at home in familiar surroundings with us.

 

[canary]

I am so sorry for your loss @Sazzle1971
Dementia seems to confound all our wishes
((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

 

[garfield3]

So sorry for your loss @Sazzle1971 . Sending strength at this very difficult time. (((hugs)))

 

[LynneMcV]

I'm so sorry for your loss @Sazzle1971 - wishing you and your loved ones peace and strength.

 

[Wildflowerlady]

I've just been following your post and want to send my sincere condolences.

 

[allywally]

I am so sorry for your loss. May your Father rest in peace now. <3

 

[Jale]

So sorry for your loss. Take care x

 

[Jazzmax]

So sorry. At least he is in peace now and you can grieve and remember all the good times before dementia. Sending loving thoughts to you and your Dad xxx

 

[Lynmax]

I am sorry that your father passed away before you were able to have him home again. It was so sudden and I am sure you are still in shock. I hope you were able to be with him and that it was peaceful.

 

[Duggies-girl]

So sorry @Sazzle1971 that you did not get your dad home but take comfort that he is at peace now.

 

[Izzy]

Thank you all for sharing your experiences of similar situations. Sadly I did not get to bring my Dad home and he passed away in hospital this afternoon. I so wish he could have spent his last few days at home in familiar surroundings with us.

I’m so sorry for your loss. Sending my condolences and wishing you strength.

 

[Frank24]

I’m sorry to hear about your Dad. It’s always a shock. I couldn’t have coped with the care my mum needed at end of life in a care home I just wouldn’t have been emotionally strong enough to do the things that the carers had to do. Your Dad spared you that experience x

 

[Sarasa]

I am sorry to hear of your loss @Sazzle1971.