Last week my dad (92 with advanced dementia) came down with aspiration pneumonia. We all thought it was the end. He was on oxygen and antibiotics. We couldn't even wake him up. The nursing home held a 'family meeting' and we agreed it was time for Hospice or comfort care measures.
Fast track to today... 7 days later. I go to the Nursing Home and he is sitting in his wheelchair in the dining room waiting for lunch to be served!! He actually recognized me and asked me if I brought my mother with me. I fed him half his lunch and half his drink. Most I've seen him eat in 7 days. I brought him outside and he commented that it was 'a nice day today'. He fell asleep within about 10 minutes but this was the best I've seen him in months! Usually he is totally confused, distant & doesn't talk or doesn't make sense.
I am shocked by this turnaround. It is such a rollercoaster to one day think it is their last and then the next day they seem almost normal again! This past week has been up and down but today was definitely an UP day. I'm almost afraid that from here it goes down quick again. Every single day I just don't know what to expect.
Don't get me wrong... I'm happy to see him in a good mood and feeling better, but it's just such a shock to the system. I mean...we were discussing end of life last week! Anyone have this happen to their loved one? I'm glad I had a nice visit today but I'm afraid to be happy about this change.
My dad isn't eating that much and sleeping a lot. They put him back on oxygen too. If I ask him a question he might answer though. I asked if he was cold and he said No, not cold. Just never know what to expect when I go to see him. Either he's in bed or he's in his wheelchair spaced out or sleeping.
It is just such an emotional rollercoaster. I leave there in tears thinking this is it and then the next day he seems a bit more with it. I really think we are coming to the end though... esp now that he is eating about 3 small spoons of food at each meal, spaced out, can barely move, doesn't speak unless you ask him a yes or no question, sleeping more...
I can't stand seeing him like this. It is absolutely heartbreaking.
Once the infection is addressed, and proper nutrition restored the elder can improve vastly.
My grandfather lived four years after his first hospice stay. He was released and we used his money for good home health-care aides because he wanted to stay in his home.
Those four years were good for him and he died suddenly while the aides were present in his home.
Like everything else hard in life, take it one day at a time.
You've worried enough for three lifetimes or more I'm sure. As long as you're not in denial give yourself a break.
Good day? Enjoy it!
Laugh, sing, whatever...
You both deserve whatever happiness you can find together.
These moments are precious.
My Mother-in-law was diagnosed with liver cancer and only had a few months at most to live.
Everytime the doctor(s) were ready to discharge her, things would turn around and she'd have to stay in the hospital.
I told my husband that I thought she just enjoyed the attention because I was going to the hospital everyday and it was just weird how this would keep happening.
She was diagnosed in July, placed in the hospital on Columbus day weekend, died on Veterans day. This was like 30 years ago.
Just enjoy, celebrate with him on those days. Don't feel guilty about it. Don't question yourself.
It is what it is and you know what is coming. I've read and listened to doctors that this is a normal thing that happens and things will be coming to an end.
It's like they know and want to leave knowing they are making you happy before you have to deal with the next phase.
Then he perked up a bit and obsessed about his 15 goats. He had a source for free wheat and was worried they wouldn’t give it to me if he got worse. We went and got the wheat an he came home and MOWED THE LAWN.
He has slowed down again. I know he can go at any minute. We are trying to avoid the hospital.
His mother went through several family call ins before passing at 85 with Parkinson’s.
There is a family joke that is done in a Domenican Republic accent, “She is bad, very bad.” Yet she survived 2 more years.
Sometimes I think my wife and I don’t access the situation accurately, even though we have been through 4 other end of life events.
Maybe the signs don’t always mean the same?
Thanks
Jak
He had 2 "good days" in Hospice and then he passed quietly the third morning. SO glad he went quietly and peacefully, no more suffering.
didnt eat - just water - breathing became labored and in two days he just took his last breath.
That was three weeks ago and it’s still so difficult- enjoy every single day
An update... I went again yesterday for lunch and my dad didn't know who I was... didn't eat lunch... (3 spoons)... didn't talk at all. He was in the dining room and not in bed... so that was a plus. But just sad that the day before he seemed so much better! The best I've seen in months. I even questioned myself ... is he really sick?
I guess from everyone's replies that this can happen and it won't last. Just enjoy the moment. I'm happy that I had a little conversation with him and he knew who I was and I told him I loved him. Not sure when we will have another day like that. Every day is different. Never know what to expect.
Thank you for all the comments. I'm not alone!
For my dad, we were all called in - he rallied and lived another 10+ years.
For my DH, he rallied but 2 days later was bedridden for 3 days before passing.
During this last bout with Pneumonia, my Dad had several episodes of being so ill that he was asleep and
"non-rousable" for many hours, his body shut down so low to preserve any fighting abilities he had left, and it was during this time (over 48 hours asleep) that we as a family brought in our Parish Priest to perform the "Rite of the Sick, also known as the Last Rites. Unbelievably the very next morning, I walked into his hospital room and he was sitting up in bed, alert, awake and drinking a cup of tea! It was a miricle, I was sobbing with joy! It was on this day that I had the most wonderful visit with him, laughing and joking that we had had the Priest in, and he was tickled to hear it!
Unfortunately, this awake time wasn't to last, as the very next day he was out again, never to regain consciousness. I was So grateful to have had that time alone with him, as I am one of 6 kids, all extremely close to our parents, but thankfully all the rest had some time with him on this last day as well.
While we never got our Dad into the Hospice program, the hospital definitely treated him as if he was, seeing to his every need, as well as the rest of our family.
I hope and pray that your Dad does rally, of course it can happen, but you will probably find that many people here have stories of how a parent rallied, only later to fail again. I am so glad you had such a Precious and Wonderful time with your Dad, happy, lucid, and in good spirits! Praying for a full recovery for your Dad!
so happy for your dad, you & your family.
Remember amidst all this, that if he’s going to stay in the NH there’s going to be a bill. If it’s not going to be private pay or LTC insurance then you need to start gathering together the documentation to submit for a Medicaid application. Usually admissions or the SW has a printed list of items needed to accompany the application.
Try to find out if right now - since he was discharged from a hospitalization- if his stay is being paid by the post hospitalization mediCARE Benefit. If so, that’s usually 20/21 days covered & at 100%. He gets evaluated by Medicare to see if rehab is still needed & he is “progressing” in rehab sufficiently for rehab to go for another 3 week period. This path continues for us to 100 days but at 80% paid by Medicare and the 20% copay by dad, family or hopefully his secondary health insurance. The longer on Medicare the more it puts off his filing for Medicaid.
Do what I did back then. Put days like today in the “bank” to think about on the difficult days to come. Take this journey one day at a time.