Struggling to know what end of life means.

[SunnyScunny]

We were told by the care home on Thursday that my Dad is in, that he’s now on end of life care, as he’s stopped taking food or drink for a few days. He also seems more agitated than normal. I don’t know what that really means, and am upset to see him suffer with AD like this.
Because I live 6 hours away I don’t when the right time to go up is. My 3 teenage sons were coming to mine for Christmas so I’ve told them things could change quickly. I just want to hold his head and make sure he knows how much he’s loved when he passes on, but I’m struggling to know what end of life means. Would appreciate advice

 

[Scouts girl]

When my mum was on end of life care, the GP stopped all her medication, except for pain relief when needed and to make her comfortable. The care staff encouraged liquids but I was adamant that I did not want them to struggle with her taking solids. I had a DNR in place and said that if the care home were happy to care for her at the home did not want her to be admitted into hospital unless she had a fall which resulted in a fracture but this did not happen. They looked after her with care and compassion to the end and for this I am so grateful. All I wanted was for her to be comfortable and pain free. I was lucky only to be living 10 minutes away from mums care home so was able to visit daily and to tell her repeatedly how much we loved her but still feel so guilty that my brother and I had only popped home for a rest and we were not there when she eventually passed away. I would imagine if dad is refusing liquids now it will only be a matter of days. Mum survived a few weeks without much food but the decline was quick when she refused to drink. Do speak to the home for their advice but if you feel you must go and see dad then do go and tell him how much you love him so you don’t regret not sharing your feelings with him. I can understand how difficult it must be living a distance away and knowing when the right time is to go and be with him but ask the care home to keep you informed of how he is and if there is a rapid decline in his health then you know it is the time to go. Take care and my thoughts are with you. Keep posting on TP as I am sure others will be able to give you help and advice too.

 

[Elaine68]

Sunnyscunny hello when my Gordon was coming to an end he stopped eating and then drinking all medication was stopped apart from pain killers as Scoutsgirl says you know then the end is near. I was so grateful I was with him when he took his last breath so guilt is something I don't feel, regret and sadness that I will never see him again apart from memory and in my heart. I get up with such emptiness each morning and think whats the point but this is just grieving what the next stage is I just don't know. We are here for each other to help when we can it may only be words of comfort but we know we are going through the same thing God Bless and I hope you get to say what you want to your lovely dad. Hugs and love xx

 

[LadyA]

Hello @SunnyScunny . I'm sorry you've had to come to us in sad circumstances.
I wasn't with my husband when he died. I'd been with him each day, but as there was no knowing how long he would live for, I went home at night. I had said goodbye, and as I always did, before I left I told him I'd see him later. That Sunday night, he smiled and said "yeah". And he died early next morning. Often, a loved one seems to wait until they are alone, as if they don't want to leave while we're there. You could sit there for days, nip out to the loo and find they'd slipped away while you were out.

The important thing is, if you want to go to say goodbye and tell your dad how much he's meant to you, now's the time to do that. You certainly wouldn't regret going, but you might regret postponing going.

 

[cat64]

I too am in limbo....my mum has been having end of life care for 8 weeks now!! She was seriously ill in hospital in october but then came back to her care home hardly eating and drinking. She now doesn't know me but turns her head to music and voices.
She is such a tough cookie and is obviously using what few calories she is taking in to breathe.

We have an end of life plan as there is 24/7 district nurse care and if she becomes agitated or in pain there are drugs that she will be able to have.

...she is also for DNR ..implemented after a discussion with the GP.

It feels so hard as every time I visit I feel like I,m saying goodbye.

Every person is so different so I would go and visit your dad and say your goodbyes just in case and then have your xmas with your teenagers....I am literally taking a day at a time and doing everything as normally as I can its the way I cope...perhaps it may help you too?

This site is wonderful support.

 

[love.dad.but..]

I stayed with my dad for a week at his care home after he drifted into a coma each day or moment as his breathing changed I thought the moment had come he had the cheyne stokes end of life breathing which is distinctive but that went on for 3 days. I had booked tickets for my husband's birthday at a local theatre..was in two minds whether to go hubby fine either way but he had had a tough year of chemo..left the home at 5.30pm intending to be back around 10.30pm...had just sat down in our seats at 7pm and had a phone call to say he has peacefully died. I would have stayed had I known that would have been his last few hours but equally that could have been anytime in the previous 3 days or I could have popped out to the toilet. With my twin brother on the other hand who lived 150 miles away...he was taken ill in very tragic circumstances I was going to drive my elderly parents to the hospital in the middle of the night but the consultant told us he was stable and he was sensitive to the thought of my distressed elderly parents having a long journey in winter at night. So with that advice in mind we decided to go up very early the following morning but he died on our way up. Can't be helped...he took a sudden downturn.I regret not going in the night and missing the opportunity to see him for the last time.

I drove a friend 200 miles recently to see a friend of hers for that very reason that I missed seeing my brother and didn't want her to have the same regret.

I would say from my experience with Dad and my brother...if you feel you want to visit don't worry so much about the exact timing of end of life as you can see from above...it is very difficult to judge sometimes...go soon then you will have been able to say all the things you want to and that will give you peace of mind and comfort even if you are not with your dad at the actual time of his passing and he will sense you are with him

 

[canary]

The last long vigil can be quite harrowing and it feels as though time just stops. Mum passed away in April after she fell and broke her hip. Her dementia took a massive swift downturn and she lost her swallow. By the time she passed away she had not eaten or drunk anything at all for 17 days. During this time I talked to her, read to her, combed her hair, put moisturiser on her face and arms as her skin was very dry and played her favourite music. Later, when she became semi conscious, the district nurse brought in some little brushes so that I could wet her mouth and make her more comfortable.

For the last three days, she started to become agitated so she was given injections of pain killers and muscle relaxants to make her pain free and comfortable and then was put on a syringe driver which gives a constant dose of these medications intravenously through a small needle which was put in her upper arm.

When she started Chayne Stokes breathing and her limbs became very cold everyone was convinced that the end would come very quickly, so I stayed with her all day and all night, sleeping on the floor. The carers in her home were wonderful and were so gentle when they washed and moved her. In the morning I had to go and check up on my OH, so I left her and within 5 mins she had passed away - I got a text message as soon as I got home. One of the older and more experienced carers told me that it was very common for someone to wait until they were on their own as they didnt want to pass away with their relative with them.

 

[JackyJ]

Hi I’m so sorry SonnyScunny and cat64 I was in your situation last week, but mum died last Sunday.

I did stay by mums bedside for 5 days, but made a promise to her that I would when she was first diagnosed. My sister visited daily and we both did what we were comfortable with, and a week later are coming to terms with mums passing. But even sitting and sleeping with mum we constantly told her we loved her and it was ok for her to go, and popping to the loo we kissed her and said goodbye, in case she passed away as we nipped out.

The end was very quick, after being told it could be hours or days, the morning it happened it was 10 minutes and I was holding her hand. I will always be thankful I kept my promise and was able to give her comfort, but it was a tough 5 days, emotional and draining.

Big hugs.

 

[Onmyown]

My dad died four years ago around Xmas. Massive heart attack died within an hour. It was a terrible shock but worse as his partner knew he had a bad heart and never told us? My parents were separated for years and he wasn't the best dad but I'd forgiven him. I'm still so angry I never got to say goodbye but the last phonecall I had with him a week before he died ended "I love you". I'll always be grateful for that. It's tough you want them to go quick not suffer but then we want to say goodbye? I really want to be there with my mum as I've been her carer and been there for her for last nine years but I do believe that if we are meant to be there we will be. The worst thing I've seen so far was my aunt last may dying very very suddenly from cancer diagnosed in February died in may. She went downhill so fast I Prayed I'd get to UK in time to say goodbye and thank God I made it she was aware I was there was very weak but could speak a little bit. Then the next day I arrived at the hospice and she had stopped eating then drinking I'd never seen someone die before so I was a basket case. Cried and cried and felt so bad for not visiting her as soon as we heard she'd cancer. But we can't turn the clocks back and I'm just grateful I got to see her and she knew I was there. I left her to go to the airport and it's not nice when you have to leave like that but she died the next morning. Very very strange as I woke up at 6.30am and felt she had gone and was glad she was free of pain and at peace. My cousin never texted me until the evening "sadly mum passed away at 6.30am". Very strange I really felt she'd gone. Of course the worst thing was telling my poor demented mum that was her baby sister and she was very upset but didn't totally grieve I guess it's one blessing that mum kept forgetting about her? I think whether we are there or not as long as they know they were loved and cared for that's most important. I'll never forgive my dad's partner but some people are just plain cruel.

 

[SunnyScunny]

Thanks for the supporting words and practical advice. The main thing for me is that he’s not in pain, and that he’ll be free to fly again when it’s time to go home. I’m 6 foot 4 and my Dad was a tall bloke, funny and entertaining, a Proper 70’s Dad. So it’s heart-renching to see this small wee man afraid and confused. AD is a horrible way to go. But he knows he’s loved.