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How long has my dad got?

SLY2207

Registered User
Jan 26, 2020
11
Hello, we were told on Friday, by our dad's nursing home that dad possibly only had hours to live, and to come in and be with him, my dad is in the later stages of Alzheimer's. He's deteriorated significantly since Christmas. We all gathered at his bedside on Friday afternoon, his breathing was very laboured, he was grey, clammy, unconscious, this terrible breathing etc went on for the rest of the day and night, the NH can't get fluids in to him and we have a 'do not resuscitate in place'. I popped home then went back yesterday morning and he seemed improved! He had some colour back, breathing wasn't so bad and he was semi conscious although agitated, he does have though this awful chesty gurgling notice in his throat, he can't seem to clear the phelm, the nurse said he could go on for days like this. The pain of seeing him like this and my own anxiety on how long it's going to be and whether I should stay with him, go home, go back to work, cry, be normal is a struggle to cope with, although the NH have been very supportive and brilliant over the last 4years they don't seem to say too much about what's going to happen imminately? All the nurse does is shrug her shoulders and says it could be today it could be another week! Has anyone had a similar experience? I have a supportive family and we are close but I feel so alone in how I feel
 

canary

Registered User
Feb 25, 2014
11,397
South coast
Hello @SLY2207 and welcome to DTP. although I am sorry for the circumstances.

Nobody talks about dying anymore and when you see it on TV it is all over in a couple of minutes, but actually, what you are describing is what happens when people die from dementia. Their bodies shut down slowly, they stop eating and drinking as the body no longer requires it, they become semi-concious, their limbs go cold and their breathing changes (yes, sometimes it is very noisy). My mum did not eat or drink anything at all for 17 days and you wonder how they can possibly go on for so long, but it is not usually as long as this.

Is your dad getting regular pain killers? Injections, patches or a syringe driver is usually used. You could also ask about medication that can dry up the secretions. Remember that he will still be able to hear, so now is the time to say the important things - I love you, thank you, Im sorry and (if appropriate) I forgive you. Play his favourite music. The nurses should be able to give you little sponges or brushes to keep his mouth moist and you can put salve on his lips.

This is a horrible limbo existance and, unfortunately, there is no way of knowing how long it will go on for. Some people have a final rally before they pass - which just confuses everyone
 

SLY2207

Registered User
Jan 26, 2020
11
Hello @SLY2207 and welcome to DTP. although I am sorry for the circumstances.

Nobody talks about dying anymore and when you see it on TV it is all over in a couple of minutes, but actually, what you are describing is what happens when people die from dementia. Their bodies shut down slowly, they stop eating and drinking as the body no longer requires it, they become semi-concious, their limbs go cold and their breathing changes (yes, sometimes it is very noisy). My mum did not eat or drink anything at all for 17 days and you wonder how they can possibly go on for so long, but it is not usually as long as this.

Is your dad getting regular pain killers? Injections, patches or a syringe driver is usually used. You could also ask about medication that can dry up the secretions. Remember that he will still be able to hear, so now is the time to say the important things - I love you, thank you, Im sorry and (if appropriate) I forgive you. Play his favourite music. The nurses should be able to give you little sponges or brushes to keep his mouth moist and you can put salve on his lips.

This is a horrible limbo existance and, unfortunately, there is no way of knowing how long it will go on for. Some people have a final rally before they pass - which just confuses everyone
Thank you so much for your welcome response ...dad had some pain relief yesterday afternoon which settled him, we all mouth swab him regularly and the nurse did say about giving him something to aliviate the phlem, my mum, brother and myself have had time holding his hand, talking to him, in private and in a family group, we have had the grandchildren in as well .. I just feel so confused inside this morning, I feel I lost dad a long time ago, he's had this terrible disease for 8 years but now he's actually going to die I don't know how to react, I readied myself for Friday when the NH phoned us all in but now it could go in for another week, the thought if this limbo for another week is more upsetting than the actual fact that he's going to die, it sounds harsh! I don't now how to act .. should I go back to work, should I stay at the NH, should I go home to sleep, should I cry, should I laugh, I'm I being judged if I do or don't do these things ... the should I's go on and on in my head, It's sound pathetic as the bottom line is dad is going to die soon but this morning I just feel totally alone with these feelings
 

canary

Registered User
Feb 25, 2014
11,397
South coast
((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))
Yes, its a terrible strain.
Make sure you eat and sleep. Sometimes you just wont be there right at the very end, whatever you do. I stayed with mum at the end 24/7, sleeping on the floor in her room, but after 3 days I had to go and check on OH - mum passed away within 10 mins of me leaving :rolleyes:
Do whatever feels best for you - if that means working and only visiting after work, thats fine. There are no right and wrong ways of dealing with this. Dont worry about what anybody else thinks. You certainly wont get judged on here.
 

SLY2207

Registered User
Jan 26, 2020
11
((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))
Yes, its a terrible strain.
Make sure you eat and sleep. Sometimes you just wont be there right at the very end, whatever you do. I stayed with mum at the end 24/7, sleeping on the floor in her room, but after 3 days I had to go and check on OH - mum passed away within 10 mins of me leaving :rolleyes:
Do whatever feels best for you - if that means working and only visiting after work, thats fine. There are no right and wrong ways of dealing with this. Dont worry about what anybody else thinks. You certainly wont get judged on here.
 

SLY2207

Registered User
Jan 26, 2020
11
Thank you, it's really helped speaking to you this morning, I have a very supportive family but it's doesn't mean they can help with what I'm feeling emotionally, I just felt I needed to talk to someone who's gone through it xx
 

canary

Registered User
Feb 25, 2014
11,397
South coast
Im glad my replies helped. You family will be dealing with their own emotions. You can feel very isolated at this time.
If you would like to continue posting we will hold your virtual hand through this time.
xx
 

Avis

Registered User
Nov 2, 2019
105
We had a similar experience when my father passed. he could not eat or drink and was given palliative care only. We sat by his bed side with the family doing 6 hourly "shifts", so he wouldn't be alone when he passed, for almost a week then one day when we were doing a change over and speaking to the nurse in the corridor, he died in the five minutes no one was with him. the nurse told us that this is quite common. So sad and difficult a time. Everyone copes in their own way so don't feel judged just do what you can. that's all anyone can do.
 

SLY2207

Registered User
Jan 26, 2020
11
We had a similar experience when my father passed. he could not eat or drink and was given palliative care only. We sat by his bed side with the family doing 6 hourly "shifts", so he wouldn't be alone when he passed, for almost a week then one day when we were doing a change over and speaking to the nurse in the corridor, he died in the five minutes no one was with him. the nurse told us that this is quite common. So sad and difficult a time. Everyone copes in their own way so don't feel judged just do what you can. that's all anyone can do.
 

SLY2207

Registered User
Jan 26, 2020
11
Thank you, I know many people are going through the same thing... Its just a waiting agonising time for us all
 

Banjomansmate

Registered User
Jan 13, 2019
1,485
Dorset
I was in a different situation because I had been caring for The Banjoman for the three or four years of our dementia journey and had been “ his Lady” for around fifteen years. Once I received the phone call from his Care home that he had deteriorated suddenly I went along and spent an hour or more sitting holding his hand and talking to him. When I first arrived he had objected loudly to any touch or moves to make him more comfortable by the care staff but once they left us alone he just lay gazing into space and not really reacting to anything I did or said but seemed happy with me holding his hand. As I was unable to stay any longer I said my “Goodbye” and told the staff that I wouldn’t be back, so as to allow his family their time with him and that is what happened. Eventually he died three days later with his brother holding his hand. Other family members had been and gone, all making their farewells in their own time, some not even turning up because they had seen him in the previous couple of weeks.
You can say your own “Goodbye” in your own time and there is nothing to say you have to have a vigil by the bedside. If you have other commitments then there is nothing wrong with carrying on your life, it won’t stop your Dad being in your thoughts and prayers. I was actually helping a friend at a Cider Festival because I had made the commitment to being there and couldn’t let her down as there was nobody else to do it. As an ex publican I am sure The Banjoman would have appreciated that!
 

CWR

Registered User
Mar 17, 2019
114
Thank you so much for your welcome response ...dad had some pain relief yesterday afternoon which settled him, we all mouth swab him regularly and the nurse did say about giving him something to aliviate the phlem, my mum, brother and myself have had time holding his hand, talking to him, in private and in a family group, we have had the grandchildren in as well .. I just feel so confused inside this morning, I feel I lost dad a long time ago, he's had this terrible disease for 8 years but now he's actually going to die I don't know how to react, I readied myself for Friday when the NH phoned us all in but now it could go in for another week, the thought if this limbo for another week is more upsetting than the actual fact that he's going to die, it sounds harsh! I don't now how to act .. should I go back to work, should I stay at the NH, should I go home to sleep, should I cry, should I laugh, I'm I being judged if I do or don't do these things ... the should I's go on and on in my head, It's sound pathetic as the bottom line is dad is going to die soon but this morning I just feel totally alone with these feelings
What I did was wait by mum's bedside till late at night. The nurses told me whether they thought there would be any change, so I went home, with my phone by my bedside.
Fortunately, this vigil was only for a few days, but it is a weird feeling of being in limbo. I was worried I would miss mum's final moments, but the nurses said they could put a camp bed down if needed. As it happened, on the third day of my vigil, late in the afternoon, mum passed away in a matter of less than a minute, just slipped away. But if you aren't there, don't be filled with guilt.God knows we lacerate tourselves enough over what we should/shouldn't have done. Your dad will know you are there. Say what you need to say to him. Incidentally, in 1953 mum had a miscarriage and went into a pre-eclampsia caused coma. For 3 or 4 days her life hung in the balance. She would often tell me that she heard the doctor say: That poor woman, she hasnt got long to live. Proof positive, that even if your loved one seems unresponsive, they are still aware.Rest assured that we are all thinking of you at this so difficult time.
 

SLY2207

Registered User
Jan 26, 2020
11
Thank you all for your supportive and lovely comments, it's a great help believe me, dad is still hanging in there and we even got a flash of a smile, we think, when my mum was speaking to him xx
 

SLY2207

Registered User
Jan 26, 2020
11
An update, my dad is still hanging in there, it's been a roller coaster of emotions over the weekend and the last few days! My dad although improved slightly, is still unable to take fluids and food but today when we visited we discovered that the Nuring Home HCAs had tried to give him food and a bit of fluids, the food was still pooled in his mouth! the Nurses over the weekend and the last few days have told us that he us dying and that dad isn't interested and not really able to take fluids and food anymore and we agreed that we would let nature take its course, but when we asked the Nurse why the HCA were trying to feed him today she didn't seem aware that this was happening and apparently the HCAs off their own backs decided he might be thirsty and hungry! My mum was there this morning so she thought there was hope that he was getting better! but this isn't the case obviously, this has been so traumatic for her and us, iv had to phone dads GP today to ask him to speak to the NH and tell them what our wishes are and to be frank it's the worse thing we've had to do not only asking the GP to do this but also informing the NH that we wish dad to pass away naturally and not to intervene, my brother and I felt like criminals in the fact that is sounded like we were saying we wanted him dead , it's really surprised me as the NH has been brilliant so far... has anyone else experienced this?
 

Splashing About

Registered User
Oct 20, 2019
392
My mum went through a short patch of nil by mouth as she refused everything. We were told she was end of life and goodbyes were said. She suddenly chose to then take milk...enthusiastically gulping it down and she is still with us today.

She actively sucks, swallows but at other times rejects food and drink. We follow her lead. Initially I found the reintroduction of food frustrating as it seemed to be just prolonging everyone’s agony. Now I am happy to follow her lead. I would be cross if someone forced food into her but if she’s enjoying it and actively swallowing I’m glad to help her.

In your mums case it sounds as if they should stop because she risks aspiration and isn’t actively participating. I wonder if the HCA has seen cases like my mum and was “offering” but failed to take the hint when it wasn’t accepted.
 

canary

Registered User
Feb 25, 2014
11,397
South coast
I think talking to the GP is a good idea. It is possible that her care plan has not been updated and with it being the weekend there was different staff who didnt know what was happening.
I do hope you get it resolved
 

SLY2207

Registered User
Jan 26, 2020
11
How much longer can my poor dad go on it's just sole destroying seeing him just led there, all he's doing is just breath ragadly, he's been like this for days, no fluid or food, he skeletal, it's just hideous
 

canary

Registered User
Feb 25, 2014
11,397
South coast
Yes, this is the long final vigil.

My mum was like this for days and I too could not understand how she was still alive. People with dementia seem to hold on to life longer than you would ever think possible. In her final days there was a little procession of carers who popped in discretely to say goodbye to mum at the end of their shift, only for them to come back the next day surprised that she was still there.

Its not always possible to tell what they are holding on for, but have you said everything that needs saying? Have you told him that it is OK to go? Is he holding on for something?
In mums case she was waiting for me to leave. Sometimes they dont want to pass away in front of relatives.

Nevertheless, it is hard to watch and the waiting is agonising.
There will be an end
xxx