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Dad near the end - questions
Posted: Tuesday, April 30, 2019 8:17 PM
Joined: 7/7/2013
Posts: 10

I got a call from the NH on Saturday evening. They said my dad had a cough and was congested so they were getting a chest x-ray on Sunday. His temp was also 102.6. 

On Monday the hospice nurse called to say he was declining rapidly, but the x-ray was clear so no pneumonia. They were going to check for a UTI, but said his stats had dropped and they had put him on oxygen. She sounded quite concerned. 

This morning, the nurse for his wing called and said he was declining rapidly. She said his breathing was rattling. She was quite upset and basically said she didn't know when, but that it seemed likely he would pass soon. Shortly after, the hospice nurse called and said she was picking up comfort meds - morphine and ativan - and that he wasn't swallowing so they weren't going to give him anything else by mouth. 

I had surgery 2 weeks ago and am not able to walk, but had someone drive me to the NH. He was definitely out of it - mumbling and I couldn't understand what he was saying. He also seemed distressed. His legs felt cold to the touch, and he was coughing occasionally, along with the rattling breathing. Also, when I got there, the nurse told me he had asked for a drink and she'd given him an ensure shake and he'd taken half of it. 

Obviously he can swallow if he drank the shake. I also thought that the "rattle" was in part because they couldn't cough and clear secretions. I totally forgot to ask about the UTI results, but the temp seemed to have dropped. 

Is it possible to be actively dying and cough? 

He's been on hospice for a couple of months (his 4th time on), and about a month ago he was moved to the locked ward because he was yelling a lot at night and disturbing the non-dementia patients. I've noticed a definite loss of speech, more staring, tearing eyes, and hallucinations so I knew he was declining, but this happened all in 2 days (and I know that can happen). 

Would love thoughts or shared experiences of similar. 

Thank you.




Posted: Tuesday, April 30, 2019 9:55 PM
Joined: 4/10/2018
Posts: 61

It's hard to know if he is in the acutely terminal phase or has a partially reversible downturn and will recover (but probably not all the way to his prior baseline). This is what makes dementia so hard to prognosticate. It is far less predictable in terms of the course than other terminal conditions such as cancer or even heart failure/end stage COPD, where we can use more objective metrics such as the cancer type and staging or degree of exertional limitation by the heart failure or the escalating O2 dependence in COPD. In dementia the most proximal cause of death could be a blood clot in the lung, sepsis, a raging UTI, pneumonia, heart failure, an aspiration event, an electrolyte derangement leading to an arrhythmia, a massive stroke, etc.

In your dad's case, sounds like he very well could be dying. With a negative chest X-ray the wet cough sounds more like bronchitis than pneumonia, although dropping sats would be highly unusual in that setting and sometimes pneumonias are missed in dehydrated patients. When they are rehydrated by IV fluids or even oral fluids the pneumonia can "fluff up" on the chest x-ray. If he is breathing faster or seems to be showing pain, definitely he should be given some morphine or other narcotic to help with air hunger. Regarding antibiotics, that is an individualized/family decision but with his degree of decline many people would either give no antibiotics or consider only oral antibiotics.

My own dad has had a few "close calls," some looking similar to what you're describing. I know this is really hard. I wish you (and him) all the best in this trying time.

Posted: Tuesday, April 30, 2019 10:09 PM
Joined: 4/29/2019
Posts: 27

Hi Soe,

I am very sorry to hear about your dad. It's upsetting for them to call and tell you that. Did they give you any time frame of when this started happening? How long he hadn't been eating and drinking? Every hospice nurse that I've worked with has said they can't tell for sure when a LO will pass. Only that it will be a matter of time after they have stopped eating and drinking. Did they try spoon feeding or using a swab for fluids and ensuring he's in an upright position? Is the coughing after eating or drinking fluids? I'm not a Nurse or qualified medical professional but it could be a cold or flu? In my area the cold has been going around which would cause a fever and cough. Could there possibly have been a TIA? He could be in pain from something he is unable to verbally express with the tears?

Those were a collection of random thoughts that I hope will be helpful. <3

I will be thinking of you, sending hugs your way!

Posted: Tuesday, April 30, 2019 10:10 PM
Joined: 7/7/2013
Posts: 10

Thank you for a very thoughtful and informative response.  He does have VD so strokes are always an option. He also has COPD from being a lifelong smoker, as well as heart disease. 

The NH just called me a few minutes ago and said he's worse than he was, that the hospice nurse is on her way out, and they don't think he'll make it thought the night. 

And I have no way to get there because it's 25 miles each way and I am 2 weeks post ankle surgery and can't drive. 

I did get to see him earlier though so at least there's that. If he makes it through the night I'll find a way to get there in the morning. 

Thanks again.

Posted: Tuesday, April 30, 2019 10:21 PM
Joined: 4/29/2019
Posts: 27

I'm so so sorry to hear that! I wish I would be able to do something to help you! A good idea if it's possible would be to get an Uber or Lyft? 

He won't be suffering any longer when it does eventually happen. It's not going to be on anyone's timeline but God's. He knows you love him. <3

Posted: Tuesday, April 30, 2019 11:13 PM
Joined: 7/7/2013
Posts: 10

Thanks everyone. He passed about 45 minutes ago. I wouldn’t have made it, even if I could have driven myself. This 7+ year journey is over. 

I wish all of you love and strength. 

Posted: Tuesday, April 30, 2019 11:23 PM
Joined: 4/1/2014
Posts: 4852

Soe, I send my sympathies to you for the passing of your dear father.  I'm glad you could see him one last time before he passed. It sounds like he went quickly and without pain since he was being medicated.

 I hope the coming weeks and months will not be too hard on you and that soon the good memories of your father will push out the sad memories of these past few years. Take care and best wishes.

Posted: Wednesday, May 1, 2019 5:55 AM
Joined: 3/6/2017
Posts: 1642

Sending my sympathies.

Posted: Wednesday, May 1, 2019 9:47 AM
Joined: 10/24/2018
Posts: 363

Soe, deepest sympathy! I too am glad you got to see him that one last time. May your heart heal apace, and all the grunt work that comes next be bearable. chris
Posted: Wednesday, May 1, 2019 11:30 AM
Joined: 7/12/2017
Posts: 1302

And remember, often people will pass when they sense loved ones are not around, its their gift I think...
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