Last week my father was put in the hospital with pneumonia. They have been unable to get it under control. We have been taking turns sitting with him. A week later we are called to a family meeting.
I hate to ask this question but how much longer will my father have to suffer with this terrible disease. There is hardly anything left of him
When will we know when the end is near. ?
Hello Toomuchtoomuch I understand exactly how you are feeling! I went through this when my husband died 2+ years ago. In fact, it was one of the main questions I had when I joined this site, so I understand your anguish and your "need to know".
Is this the 1st time he has had pneumonia?
Has your father been given antibiotics? If so, there is a chance he may recover to be able to talk to you all again. He will be weak, and may have some understanding of how sick he is.
On the other hand, you say they have been unable to get the infection under control. So I assume he has had antibiotic with little improvement. The family meeting is likely to be to discuss what further treatment you want them to give - if any. They will talk to you about "end of life" care and may suggest giving him morphine via a pump. This makes your dad more comfortable and more sedated so that coughing is reduced. It also slows his breathing and general function. Care staff will check him regularly, moisten his mouth and tend to his needs. I would not expect care to include nutrients or IV fluids. All this is what I understand to be part of "end of life" care. At the family meeting I would expect them to explain to you that your father is dying and to offer an estimate of how long. Also go with your gut instinct on this.
This all sounds very clinical and unemotional. I know there will be many mixed emotions on your side!
This is what you have been waiting for, yet dreading!
Keep his family around him. Talk normally, and talk to him, he may well hear you, and be quietly comforted by the normal activity around him. Say your goodbyes. Tell him you will be ok and that it is all right for him to leave you. Hold his hand, wipe his face with a warm moist face cloth; swab his mouth and lips if they seem dry. Ask a carer to show you.
My husband had probable CBD. He had his 1st bout of pneumonia 3 weeks before he died. He had another which weakened him further and then choked on soft food which set off the final bout. He was not given antibiotics for the final bout. It was very obvious he was close to the end and it was time to stop interventions. He was given morphine and I was comfortable with what was happening, in that the coughing was so obviously exhausting him and I did not expect him to recover. He lasted 3-4 days after the choking episode. His end was peaceful, but I was not there when he passed away. Having spent the previous 2 nights by his side, I had gone home to shower and change, and he chose that time to leave me.
You may find an online talk of use by Barbara Karnes, a Hospice nurse. She describes the various stages of dying. I found it helpful, but not useful when my love's time came.
Take some deep breaths, shed some tears, tell the family. Find an inner calm. After your (and his) long battle, the end is near.
Will be thinking of you all!
Big hug!
Jen XXX
Thank you Jen. I really appreciate your advice and your response. I am also sorry for your loss. Xo
Don't feel guilty. How is it wrong to hate seeing someone you love in this state. We also had a family meeting when Steve was dying. It took half a second, with me and Steve's son looking each other in the eye. There was no decision to be made. After all the years of the professionals being totally useless, at last, the end was something they understood and could do something about. It will be the same for your father. They will guide you.
Sending big hug and much love at this terrible time.
Lots of love
Anne
Thank you for your honesty. It helps knowing that I am not wrong for feeling this way. I am sorry for your loss as well. I hope your days get sunnier as they come along. Xo
Watching your father suffer must be heartbreaking.
If my mum was at this stage I am sure I would feel the same way.
Sending hugs to you at this difficult time.
Lynda 💜
So sweet of you! Thank you❤️
Hello Toomuchtoomuch,
My brother died recently. He was in a nursing home. The staff were amazing but no one told us he was actually dying, including the visiting doctor who just said it would be TLC now. I asked how long and she said she didn't know.
I believe it was difficult for anyone to give a time but the signs are there albeit very subtle.
My brother hadn't been able to talk for over a year so couldn't tell us how he was feeling.
Mum (89) and I sat with him for two days.
Gradually his breathing changed and became very rapid. He didn't close his eyes or blink. His hands and feet became very cold and I swear his face became more and more gaunt as we sat there. He finally passed when just my mum was with him, I knew it was what he wanted.
I'm sure everyone is different, but that was the way my lovely sunny brother chose to go.
He had suffered with PSP for 7 years. He didn't deserve to be struck down by such a wicked illness.
My heart goes out to all who are still suffering but can honestly say I am glad my brothers time is over. His funeral is tomorrow so he can finally rest in peace.
Love to all.
Sue x
Sorry for the loss of your brother but thankfully his suffering is over.
I feel so terrible for you! God bless all of you. I’m so relieved to know your brother is free. I will be thinking of you today
Xo
I'm so sorry for your loss but glad for your brother that he is finally at peace and his suffering is at an end.
I hope that my brother will die peacefully in his sleep. I don't want him to go, the very thought of him not being in this world breaks my heart again and again, but I don't want him to suffer more than he already is.
Thinking of you and you Mum at this sad time.
Erica xx
Thank you EricaE,
The funeral was yesterday and a lot of friends from his past came to pay their respects.
Mum and I had seen him suffer for so long and were finding it hard to remember the fun loving man that he was, so it was lovely to hear all their stories, to remind us of our kind hearted rascal who liked to party.
Thinking of you on your journey.
Stay strong.
Big hugs
Sue x
Oh those stories must have been so lovely to hear.
Thank you Sue for your kind words. Sometimes the sadness is overwhelming isn't it.
Thinking of you and your Mum and hoping the road ahead will not be too hard for you as you come to terms with your brother's death and grieve for the "kind hearted rascal who liked to party." Big hugs.
Erica xx
Hi,
My father was taken into hospital the other weekend with a chest infection. After seeing him so frail in the care home a few days prior I actually thought it was going to the end for my dad. After spending 4 days in hospital he went back to the care home, my mother sat at his bed side stroking his face whilst crying, then surprising the day after he was sat in a chair looking well. It’s all the emotions you go through, wondering and praying that sadly the end is near.
What did surprise me was how little the hospital knew of this disease. So next time my dad gets taken into hospital I will print off a list of symptoms for the Doctors to be aware of.
My dad has had this disease for around 11 years and is at the end stages, I wonder how many more chest infections he will suffer. My dad was in pain this time with his chest.
All so very sad.
Your experience with the hospital not knowing about his disease is pretty much universal. When my husband was hospitalized during his last 6 weeks of life,they not only did not understand,but were changing around medications that had been prescribed by his neurologist who did understand the disease!
You have to stay on top of that for him as best you can and I wish you the best! Janet
We really must share everything we know. ❤️
I feel your anguish. My mum was diagnosed with probable CBD 6 years ago now and had had signs for at least 10. She's been hospitalised twice with severe chest infections that have turned to pneumonia. On both occasions despite the Drs predictions she's pulled thorough. She had another serious infection last summer & this time I refused to send her to hospital & asked the care home to just make her comfortable. She did had Antibiotics but they made no difference. They started end of life care & low & behold she rallied again & a week later the infection passed. Each time she's at a new norm lower that the last. She can't talk (hasn't been able to for over a year), is bed ridden, can barely sit up right & sorry her weight & is peg fed but despite this is losing weight every month.
Don't feel guilty. Every time I am with mum I wish for release for her. This cruel disease has just left just the shell of her behind. I made the decision last year that enough was enough & felt all the emotions that I've no doubt your are going through. Your dad will decide if he's had enough ultimately not you... You'll just do what any loving daughter would do which is make sure he's well cared for & doesn't suffer.
I appreciate your words of wisdom so very true. God bless you both. 🤗
Hoping your strength and endurance remain strong to bear and sustain what you are and will be going through! Pray hard for this strength! We don't know when and how a breakthrough could come, perhaps not too late! Till date no remedy has been found because they are not sure of the cause! Give your father all that is possible from your side, especially love! May the good Lord bless you! Take care of yourself better than ever and live life abundantly!
Thank you and to you as well ❤️
When my husband was at this stage he closed his mouth and made it clear he had had enough. We both had similar ideas about quality of life. I followed his wishes of no more intervention . I nursed him at home. Like Heady, our son and I both silently recognised it was his time. All the family spent time with him and he passed painlessly and quietly. He chose to go when I left him to answer the phone. Many tell me that this often happens.
Its such a difficult time but it felt right for him to take control at last.
When it is right for him your father will be ready to go.
Big hug from Jean xx
Thank you! So sweet!
I have no answers .... all I feel is a lot of tenderness and love for you at this difficult time. Sending you tons of big bear hugs and praying to ease your pain
I already feel better with your big hugs. Thank you🤗
I don’t know how to answer your question because I never experienced knowing the end was near for my husband. He died what seemed rather suddenly while in a nursing home getting therapy supposedly to regain his strength to come home.
I wish you and your family well and know that you will make the right decisions for your Dad. My heart goes out to you! Janet
I am so sorry for your loss. In everybody’s story there are blessings. I wish you had your chance to say good bye. Thank you and take good care of yourself🤗
My mother was in the exact same place as your dad in January 2018 with a bad bout of the flu. We were given an end of care plan. She bounced back but her condition was now worse and she needed more care in a nursing home setting. That was 15 months ago and she’s down to 91 lbs and barely eating. Her urine is consentrated and she has a hard time moving her bowel. I have no idea where she gets the strength, I’ve told her that she’s fought the good fight and if she can’t do it anymore it was ok to go. This disease has torn my family apart, it was far from perfect before but psp just made it worse. He will go when God is ready for him, until then keep telling him you love him, his mind is all there. God bless you through your journey and keep us posted.
Thank you! God bless you and your mother. Let’s hope they find a cure for this one day.
There is no guilt with this awful illness. You survive they survive and then they go. Take care of your self and your family. ... Val
Thank you! I appreciate your message.
Hi, my husband seems to be pretty much the same point of this dreadful ilness as yours, he is just getting over the c dif bug and pneumonia 2 weeks ago, and now landed back in hospital with urinary track infection sepsis and ecoli. Pallative care has been called, not looking good.
I am so sorry. Wow this has been a terrible journey for your husband. I wish you
Peace and comfort. May his days moving forward be a lot easier for you both xo
Haven't heard from you in ages, Mary - I can see why 😟...
Hugs to you in this hard time ❤️❤️❤️
Anne G.
Hello,
I can't answer your question (I can only ask the same one) but I just wanted to say it's love that's behind your question and so you shouldn't feel guilty. We none of us want the ones we love to suffer.
Sending you and your family love at this dreadful time.
Erica xx
Thank you so much❤️ My father passed away last night. He was very peaceful and I know that he chose the perfect moment. It is a blessing but we all miss him so much.
For the loved ones going through this. When we were all questioning the time when he would be free from this terrible disease, we were told that once all fluids and feeding tubes were off for 5 days it would be close. The doctor was correct. The turmoil in our hearts at that decision is unbearable. But today he is free!
RIP dad. I love you so very much😇🙏
I'm so sorry to hear that your father has passed away. I hope it's of some comfort to you all to know he was very peaceful at the end.
You obviously love your Dad very much and I can only imagine what you are feeling at this time. But he is at last free of this cruel disease although I'm sure you must be heartbroken and miss him very much indeed.
Hold each other close, weep, wail, laugh and share happy memories of your Dad.
Thinking of you,
Erica xx
Thank you. You are so very kind🤗
I'm really sorry to hear that your Dad has passed away. May he rest in peace finally from this evil disease.
Now it's time to look after yourselves. Take care and be kind to yourself.
Sending big hug and much love
Lots of love
Anne
Thank you. I am sending love your way as well. The support from all of you have been so wonderful 🤗
I know what you mean. I couldn't have travelled this journey without this forum and everyone on it. We are still here for you, during the next part, which can be just as rocky and painful.
Lots of love
Anne
I know how you feel relief and pain at the same time. It's hard to lose your father.
I'm so sorry for your loss.
Love Jean xx
Thank you❤️
Your precious dad has been blessed with peace from all his suffering.
I'm so sorry. Such a sad time for you.
You are in my thoughts
Love Lynda xx
Thank you!❤️🤗
So sorry to see your dad has passed away - yet relieved for you all that his fight is over and he is at peace.
As Heady says, now is the time for you all to step back and think of each other and yourselves. Take care of each other, but most of all think of yourself, and look after yourself.
My thoughts are with you at this sad time.
Hugs
Jen xxx
Guilty 
The message I've dreaded to write.
Confused, guilty and bereft
I feel like all I do is complain.
