One day hospice... the next week he is better!

Linda, I’m happy you had this day with your dad. When I would go visit my mom, also with dementia, there were occasions when we would have a wonderful visit. She was “present and accounted for” and would ask me about my husband and my kids and her Great-grandsons. I was aware that on my next visit, she would most likely be hallucinating about how they moved the entire facility, building and all, to Russia overnight.

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.

It’s called a rally. Be happy. All any of us have is this very moment.

When he has a good day like today, stay as long as you can and let him know you love him.

Well this kinda takes all the ?s on hospice off the table for now!

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.

Linda, while my own Dad did Not have dementia, he did have a very difficult and life altering illness called PSP, Progressive Supranucular Palsy, and in the end, he battled Aspiration Pneumonia twice, an unfortunate side effect of his illness, this final infection taking his life.

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!

Yes. Sometimes they "rally" - how long it lasts is anyone's guess.

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.

My MIL was on it four times while in the NH. Her weight would go down, they would sign her up for it. Hospice staff would come in give her the extra attention, she would regain the weight and they would discontinue their assistance. It was such a stressful decision the first time: feeding tube or hospice. But then we realized that hospice was not necessarily the “last” choice but that it was the right choice for her situation. Glad to read that you got a little more “good” time with your LO. It lifts your heart when you see a return of that special personality.

Thanks for sharing your experiences with me.

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!

So hard reading these - knowing we had the same kind of days with our dad / sitting out in the sunshine on the deck which he loved - then next day in bed - couldn’t/wouldn’t talk-
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

Not to sound morbid but when I used to work at an animal hospital, we would see something similar. Animals in dire condition would make a huge turn for the better and then soon crash afterwards. We called it the "calm before the storm" or a last hurrah. Not saying that's what's happening in your dad's case but enjoy and embrace the moments.

Thanks for sharing. I'm glad to hear I'm not alone on this emotional rollercoaster. I put mom, who has moderate dementia, under hospice care after a very rough couple of weeks where she was lethargic, not eating, not coherent, vomiting, and developed other health problems. Now she's perky, attentive (for her) and back to her happy delusions and somewhat manageable hallucinations. Made me question the hospice decision, but I think the additional care and support she gets was a good move. While I love when she is up and cherish those moments, before visiting her in the nursing home, I have to prepare myself that it could be very down that day. It's challenging for sure, but this is the journey we're all on. Glad to know it's not just my mom who rallies.

My FIL did the same thing. It was confusing and without question, hard to handle. But his doc assured us it was simply and EOL rally. He was eating, and he hadn't been doing that---but he was still accepting morphine and Ativan and those helped his horrible hacking cough. I know he felt better the last week of his life on Hospice than he did the previous year.

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.

My father, 86, is at home with my mom. A week ago we thought he was near the end. It was difficult to get him to take fluids. He was sleeping 90% of the day. Hid breathing was so shallow. It was an emotional time for me.
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

My MIL had an experience like that as well; she was dying of lung cancer at our house, and there was a few days that she was "up" and appeared much better. Unfortunately, it didn't last; she had a bad turn that put her in the hospital, and then to my BIL's house on hospice, for two last weeks.

Enjoy the good days.

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.

Yes, we went thru it too with my mom. She was good, she was not. She was up, she was down. In hospital, good back home, oh oh back we go. Some changes were like the flick of a switch.

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.

Its called rallying. My daughter sees this all the time. The patient is at deaths door then they get a boost of energy. Eat well. Then a few days later they pass. Not that the passing will happen with Dad, but just explaining why this happens.

in June, my mother quit eating, and mostly quit drinking, for eight days. Quit talking. Slept and slept. Dr said to call all family and we put her on hospice. Four days later she got much better, and now she’s eating in dining room at nursing facility three times a day. She smiles a lot! She has Alzheimer’s and doesn’t remember any of it. About once a week or so, she quits eating again for three or four days. I keep telling myself it’s her “rally” but now I believe she’s going to be around a while! She celebrated her 89th bday on July 12th. My out of state brother probably thinks I’m crazy for telling him she was dying! Oh well, he hasn’t traveled the three hours to see her in three years, so I won’t concern myself with him. By the way, our father shares a room with her. He’s 94.

Yes, it could be called "The Last Hurrah." I've seen it many times when you witness the very critically ill patient have one last sudden burst of energy before they pass. This didn't happen to either of my parents, though. My dad passed from a sudden coronary attack. My mother had a stroke that left her comatose.

Infections can cause dementia to appear or worsen.

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.

Sounds like my dad who just passed away from ALZ just after his 93 birthday. Same thing, seemed like things were terrible, then he rebounded, then bad, then rebounded. I think that's how it goes. Finally he passed, probably thankfully.

Thank you for all the replies.  It's good to know that I'm not the only one experiencing this.  Not that I want others to go through this, but just comforting that I'm not alone.

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.

I'm so sorry to hear about that. Yes that happens a lot to the elderly. You just have to be ready for the possible outcomes that might happen to him.

Today I started applying for hospice care for my 89 year old husband. He was in the hospital for diarrhea and a kidney stone that they discovered in the ER. He was transferred to a nursing home seven days ago for rehab and a chance to get stronger. He sleeps all the time (he slept as long as you would let him at home, too). He has to be roused for PT (I don't yet know what's happening there) and to eat. He is continent. He doesn't want to eat. Drinking goes better, as does fruit. He hates his plate food, so we supplement. I know he wouldn't eat at all if we didn't come to visit at lunch and supper. As soon as he can he asks if he can go back too sleep. His caregiver has gotten a little more action out of him at noon. They even played bingo yesterday. Last night he was very tired and went back to sleep right away. I figured that I had seen the last of any good days and times. Now I won't be so shocked if we suddenly have a good day. Thank you so much!