Dad given days to live. Not coping!

LostOne

Registered User
Mar 9, 2018
17
0
My dad was diagnosed with early onset Alzheimer’s in 2013. He was doing well, just a few forgetful bits here and there, he was still managing to live by himself with a few checks a day from care workers. He was like that right up until November 2017 when he was sectioned and has been in hospital since. He was starting to show signs of being able to be released and after an assessment this was granted however, before we found somewhere suitable for him he declined quite rapidly. Over the last 2 months he has become bed bound, he can no longer swallow food and is only taking around 30ml of fluid per 24hours. He hasn’t opened his eyes for 36hours. On Monday he was so chatty and awake, making jokes (although we struggle to understand him as his mouth is so dry) I stupidly thought the drs were wrong and he had so much more time than they said now he’s gone again. An assessment by his dr this morning was that he might not make it until Monday unless he picks up over the weekend. My dad is only 61, I feel like I’m 18 and not coping with this at all. How do I do this? How do I leave when he passes and just go home?
I don’t have the strength to do this :(
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hello @LostOne and welcome to the forum, though I am sorry for the reason that has brought you here.

This is a difficult time. I remember when my mum was at this stage. She too was up and chatty till about 3 days before she passed away. I have a wonderful photo of her and her great grandson banging spoons on the table and both are laughing their heads off. I knew, though, that she was already dying as she had not eaten or drunk anything for a couple of weeks and she had been placed on palliative only. When people die from dementia their bodies close down gradually over a couple of weeks, or more, and the not eating and drinking is a symptom of this - their body cannot process food and drink anymore.

This waiting stage makes you feel in a twilight zone. The waiting is unbearable and you both yearn for and dread the end. It will come though and you have to do what feels right for you during this phase. Some people want to stay, others do not. If you want to stay then do things like playing his favourite music and reading/talking to him as hearing is the last sense to go. You can get little brushes or sponges that can be used to moisten a dry mouth and you can comb his hair and put cream on his face and arms where the skin will be dry.

Care homes are usually wonderful around this period and if he passes away while you are there they will not turf you out straight away, but allow you your own time. Mum passed away when I was not there. I think she had waited for me to go and I have been told that this is common. You find that you manage because you have to.
 

Soobee

Registered User
Aug 22, 2009
2,731
0
South
It is an incredibly difficult time, especially when it is such a rapid change.

You will get through it, even though you feel you can't. I remember the care home ringing me to tell me that mum was probably going to die in the next few hours. I remember sitting in the car, with tears rolling down my cheeks, taking a few minutes of deep breaths (in 123, hold 123, out 123, hold 123), then saying aloud "right, let's do this" and going to sit with her. It is so hard to do but you will find the strength, just like many of us have.

I hope that your dad is peaceful and comfortable. I was able to stay with both of my parents for some time after they died. With dad I wanted to check he'd gone because he just looked asleep.
 

Soupy

New member
Nov 28, 2017
1
0
My dad was diagnosed with early onset Alzheimer’s in 2013. He was doing well, just a few forgetful bits here and there, he was still managing to live by himself with a few checks a day from care workers. He was like that right up until November 2017 when he was sectioned and has been in hospital since. He was starting to show signs of being able to be released and after an assessment this was granted however, before we found somewhere suitable for him he declined quite rapidly. Over the last 2 months he has become bed bound, he can no longer swallow food and is only taking around 30ml of fluid per 24hours. He hasn’t opened his eyes for 36hours. On Monday he was so chatty and awake, making jokes (although we struggle to understand him as his mouth is so dry) I stupidly thought the drs were wrong and he had so much more time than they said now he’s gone again. An assessment by his dr this morning was that he might not make it until Monday unless he picks up over the weekend. My dad is only 61, I feel like I’m 18 and not coping with this at all. How do I do this? How do I leave when he passes and just go home?
I don’t have the strength to do this :(
I am having similar problems, my 89 yr old mum broke her hip 5 weeks ago in nursing home. In rehab after hip operation. Physio not working for her. Rapid change since Sunday. More confused than normal. On antibiotics for an infection. Now unable to eat or drink normally. On thickened liquids etc. Not sure what has happened and why so quickly.
 

Oasis2

Registered User
Mar 5, 2018
12
0
Hello, my new to this forum to, my heart goes out to you. I'm at the final stage with my Mom, all I can say is that I'm dreading her passing away, but I'm hoping I'll get relief as she'll be free from this cruel disease and at peace. Theres no right or wrong way to cope with this, or what emotions you feel.
In my thoughts
Take care
 

Scouts girl

Registered User
Jan 18, 2017
306
0
It is a heartbreaking time for you. My mum deteriorated very quickly over just a period of a few weeks as she was not eating or drinking in her last few days. It will all seem so surreal in those last few hours and I do so regret that I wasn’t with mum when she died just having popped home from the care home for a couple of hours break. I was only 10 minutes away so returned as quickly as I could to spend some time with her and to tell her how much we loved her and understood that she wanted to go and end this awful struggle. You will get through it somehow and just try and reassure yourself that you did everything you could for your dad and that he is comfortable. My thoughts are with you.
 

Swoozy

Registered User
Nov 6, 2016
66
0
Hopefully you aren’t alone in all of this and you have people around you can share this with. If not then allow yourself time and remember there is no right or wrong way to grieve for a loved one.
It’s ok to sit and cry it’s also ok to laugh at the good times.
I sat with my aunt on her last day (not at the actual time of passing) and although it was sad it was also nice to share those moments of peace with her holding her hand talking to her.
We are all living our last days we just don’t have a date when that will be. Treat today as another day albeit tinged with sadness.
I got through my dads death (we had to turn off life support) by doing the things I thought he would want. He wasn’t a man for wallowing. He was a let’s get this done kind of man. I felt doing it that way would make him proud.
Sending you massive hugs and positive thoughts xxx
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I am having similar problems, my 89 yr old mum broke her hip 5 weeks ago in nursing home. In rehab after hip operation. Physio not working for her. Rapid change since Sunday. More confused than normal. On antibiotics for an infection. Now unable to eat or drink normally. On thickened liquids etc. Not sure what has happened and why so quickly.
Hello @Soupy
Things like an infection, anaesthetic, broken bones, pain or a shock can and do progress dementia.
Mum fell and broke her hip last year and had to have surgery. Although the operation went well she went into massive decline and passed away 4 weeks later. People can live on pureed food and thickened liquids for a long time, though.
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
It is a difficult time to watch and wait as I found last year for dad I hope you have support around you and am sure the care home staff are doing all they can to keep your dad pain free and comfortable. You will find the strength from somewhere however you must do what feels right for you.
 

campervan21

Registered User
May 4, 2017
173
0
Thinking of you at this sad and difficult time,we lost dad last year, staff at his care home were so caring and compassionate towards dad and us as a family, myself and sister were with dad , x
 

LostOne

Registered User
Mar 9, 2018
17
0
Thank you for all your support. Thankfully I’m not alone I have my sister with me. We’re currently staying the the hospital with him as we live quite far away and I can’t bear to leave him, I don’t want him to be alone although I’ve read and heard a lot that sometimes they like to go when no one is watching. His breathing has started to stop and start this afternoon I’m just question everything.
I am trying my best to be thankful that we got to spend this time together. Most people don’t get to say goodbye to their loved ones. I described it to my sister as feeling bittersweet as we get to spend time and tell him everything we want to say and just be with him, but at the same time seeing him like this and waiting and wondering if it’s now, if this is it. It’s like emotional whiplash.
I’m just so tired, I’m not sleeping so I’m coming down in the middle of the night to stay with him and make sure he’s still with us and he knows we’re here, I just want him to know he’s not alone.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
There is always someone around on TP if you need to talk.
Meanwhile we will all be holding your virtual hand.
We might not be there in flesh and blood, but you can imagine us all standing around supporting you.

The change in breathing (Chayne Stokes breathing) is a sign of the end. Mum went 2 days with this, but it is usually only a few hours. You will also find that the limbs go cold and the eyes go opaque. This is part of the process
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
I am so glad you found this forum in time to get this wonderful support that I knew our members would give you. This is such a very sad time for you, but very precious too. What a special thing it is to be able to support our loved ones at the end of their lives. When my husband died, it seemed to me there were a lot of similarities to giving birth. It is hard work and what you need to hear is loved ones voices and feel their hands holding yours.
You and your sister are doing something wonderful for your dad.
 

Frankie15

Registered User
Dec 13, 2016
17
0
My dad was diagnosed with early onset Alzheimer’s in 2013. He was doing well, just a few forgetful bits here and there, he was still managing to live by himself with a few checks a day from care workers. He was like that right up until November 2017 when he was sectioned and has been in hospital since. He was starting to show signs of being able to be released and after an assessment this was granted however, before we found somewhere suitable for him he declined quite rapidly. Over the last 2 months he has become bed bound, he can no longer swallow food and is only taking around 30ml of fluid per 24hours. He hasn’t opened his eyes for 36hours. On Monday he was so chatty and awake, making jokes (although we struggle to understand him as his mouth is so dry) I stupidly thought the drs were wrong and he had so much more time than they said now he’s gone again. An assessment by his dr this morning was that he might not make it until Monday unless he picks up over the weekend. My dad is only 61, I feel like I’m 18 and not coping with this at all. How do I do this? How do I leave when he passes and just go home?
I don’t have the strength to do this :(
Hello I'm so sorry
You're where I was last week. My mum passed 28/2 after days of not eating and drinking and it was hideous to watch. In the end I was relieved to see an end to her fight. I wasnt there at the very last as I had stepped out the room to have a mini break down! I just tried to keep her mouth moist with swabs and sat and held her hand. It didn't feel like much but it's comforting now. I don't know yet how to fill the void but of course 'atrangements' are required and prevent me crawling under the duvet. What I will do after remains to be seen!!
 

LostOne

Registered User
Mar 9, 2018
17
0
He made it through the night tonight thankfully, he was given some fluids and medication to help with the rattle in his throat and his breathing seems to have stabilised again, it’s very shallow but no stop start. I was so worried about being away from him and trying to think about funeral arrangements as the staff here have suggested it might be time to put things in place. I’ve never had to do anything like this before and I’m finding it quite overwhelming. That, coupled with the lack of sleep is just tipping me over the edge. I’m struggling just to keep my eyes focused (and open) on one point and I have this awful sick feeling in my stomach. I know I need to take of myself and I’m trying but it’s just so hard. I’m so thankful I have my sister here for that extra bit of support. I’m so exhausted now :’(
@Frankie15 I’m sosorry to hear about you Mum, I hope you can take comfort in knowing she is no longer in pain x
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Dont be too hard on yourself @LostOne . It often goes on longer than you would imagine and you still have to eat/sleep/go to the loo, even if you are not working.
If the Chayne Stokes has gone then his passing wont be imminent - can you get some sleep now?