My 92 yo father with advanced Alzheimers was accepted to Hospice 2 months ago. He lives at home with my 88 yo mother. An aide comes 3 days a week to care for him for 4 hours a day.
Its so hard to see the swift decline. This time last year he was still playing 9 holes of golf twice a week, walking easily throughout the apartment complex, handling stairs with no trouble, telling his (tiresome) old stories. (I'd love to hear him tell them again!) Now he does nothing, hardly eats, can't remember where the bathroom is.
Anyway, the past 2 days he has been very agitated, up and down all night, when in bed very restless, bunching up the sheets in his hands. Twitching, crying out, seems to hurt all over. He isn't very communicative.
Is this him moving into the actively dying stage? Is it time to call my siblings into town?
Since you said your father is with Hospice they should have given you a booklet about the end of life stages which show the signs from months to weeks to days and then hours. This lays everything out to see at a glance where they might be at. We have used the same hospice organization for my dad in 2004 and now for my mom in 2020 and I have received this booklet in both cases.
From my experience when my dad died - the restlessness, loss of communication, picking at things (like your dad with the sheets), crying out seems to me to be indicators that he could be moving into the dying stage. But has others have suggested do contact your hospice provider as they will most certainly know!
I'm so sorry you've had to see the swift decline as I've been there as well. Once my dad was diagnosed with Pancreatic Cancer, he died three weeks later which even shocked our hospice case manager to the point she actually came to the house on her day off to see for herself. She was shocked because she thought my dad would make it at least another five months. He died that very night.
Just like your dad, my dad wasn't a warm and fuzzy man either. He was kind of a loner type, forty years older than myself when I was born and suffered with depression after coming back from WWII. And just like you, I wanted to be with him in his last moments even though I had never been around death before (I was 41) - I too felt like it was a gift. Two days before he died, I must have sensed something and I started spending the night at my parents just so I wouldn't miss it while my husband stayed at home. On what would be his last day, I sat beside the hospital bed they had set up in the living room. I had my soft music on (he loved music) and I sat beside the bed while singing to him and rested my hand on his arm. I'm so thankful for those moments because I really didn't want him to be alone - I guess because he felt alone so many times in his life. In his final moments, the hospice nurse, hospice volunteer, my mom and my husband and I were all surrounding him. I told him it was "ok" to leave us and that I would take care of mom - moments later, he was gone.
My you feel God's presence as the time approaches - you'll be in my thoughts and prayers!
You might want to call the siblings anyway to let them know there has been significant changes that you will be asking about. They should have the opportunity to see him alive. Don't wait until funeral arrangement need to be done. Tell them and they'll decide to come or not.
I have notified my siblings and 3 if the 5 of us were there today. My youngest sister, age 53, is having a very difficult time with this. She feels she'd rather not see Dad so deteriorated, but wants to see him a last time. She'll come to the right decision for herself. The rest of us are fine with whatever she decides, we all grieve our own way .
This forum has been so helpful and makes me feel like I have a room full of friends that have " been there, done that". Thanks to all of you for the support.
Today Dad went outside in his wheelchair for a lovely visit with 3 of his 5 children, 3 granddaughters and a great grandson. The visit was only an hour but Dad laughed and enjoyed it.
But, that was after sleeping for 36 hours straight and no interest at all in eating or drinking.
We are just taking what each day deals us.
As difficult and heartbreaking as this ordeal has been, I am feeling blessed to be a part of his final transition. My Dad was never a "warm fuzzy" guy, hugs from him were rare. Not that he didn't love us, he was just raised that way and never learned it. Anyway, now I can give him a Hello kiss, hold his hand, tuck him into bed, and feel that touch and closeness.
It may sound strange to say it is a gift to me to be with him, but I suspect anyone who has experienced it may agree.
I am not a medical professional and not giving any advice but it's certainly easier to see the timeline in retrospect because no one knows if our loved ones will not wake up tomorrow or if they will linger in misery for a much longer time. Our devotion and love for our Mom and our most humane desires made us wish for the former. And we're sure she wanted that, too.
It's almost like caring for a baby (including the diapers) without any of the joy. I know how excruciating painful it is when it's impossible to explain to them that you're not trying to hurt them. After they cry out in pain from you gently adjusting their position in bed. It's heartbreaking and one of the things that made me cry more before Mom died. As our home hospice nurse (RN) said, "They don't like to be messed with." At all! So true!
About 3 months before she died, Mom's dementia was full blown but she was still getting around the house with her walker (when she remembered it!) But she starting to lose interest in eating and drinking. She was about 5 feet tall and thin all her life, but only "skin and bones" as she would have said, weighing about 70 pounds at that time.
She became even more uncooperative and paranoid to the point of sometimes biting, scratching, kicking, etc. because she would forget who we were and felt she was defending herself, And boy could that Irish lass kick! But be careful because if you're not paying attention this disease can make even a frail person cause harm to caregivers. Ask any nurse! Again, "they don't like to be messed with"!
But they sure do make messes! Bless my sister for cleaning up some very disgusting bed sheets and such. She's a saint!
We really didn't start home hospice visits until the final week and what huge relief they provided. Our nurse explained that even during this wretched final stage of life, the survival instinct goes into overdrive. The body conserves most of it's energy by switching off non-vital functions like digestion and swallowing. When we fed her even a small piece of ice pop or a drop of water, loud gurgling from her stomach would be immediate and it literally would go right through her.
Amazingly, she was bedridden only for that final week or so, sleeping mostly. When she was "awake" it seemed she really could still hear us and respond non-verbally. Fortunately, she never in her life needed many (or any) meds and morphine never became necessary. She was always hesitant to take even an aspirin so she would have HATED it!
On her last day, Mom quietly slipped away with my sister and I holding her hands. It was actually a very moving and even strangely beautiful in a way. She was finally freed of the pain and suffering and we felt relief. We were quite fortunate that there were none of the common disturbing throes of death of which we had been warned.
Long story short, it's unpredictable and out of our control so stay strong. Given our nurse's vast experience caring for hospice patients every day if she might venture an educated guess as to how much longer Mom had. Wisely, she declined, explaining she learned early on that if she said 1 week, and family members were alerted, they would be miffed if it was longer. And it often was.
I put off getting on a plane during a pandemic and seeing Mom for the last time for obvious reasons: I didn't want to get COVID-19 and I certainly didn't want to unwittingly carry it to my sister's home and risk infecting anyone. But I FaceTimed with Mom every night and I felt that it was now or never. It turns out I was correct and I would feel very guilty now if I had not gone. But that is a personal decision and I AM IN NO WAY SUGGESTING THAT ANYONE ELSE TAKE THAT RISK, based on my story. I know that if my Mom had been sound of mind, she would have urged me to stay home.
Although we administered liquid morphine and anti-anxiety meds, dad still had bouts that seemed like he was crying out in horrible pain. The nurses said that it wasn’t actually severe pain, but rather his body reacting to shutting down. Still, it was difficult to hear.
One additional note: Some people prefer to die alone without family around. That was our case. Even though we had said our goodbyes and told dad it was okay to let go, he hung on. Then a sister (who couldn’t be there with us) called, and we put the phone up to his ear. After the phone call, we left the room for a little while. When I went back to check on dad 15 minutes later, he had passed. In retrospect, we think he was waiting to hear from the sister before he died.
Has hospice provided any medication for your dad for anxiety and pain? What you are describing sounds like what hospice care had told us...signs of agitation and anxiety. They will be restless, tug at the sheets etc. Hospice had provided us with liquid medication, one for anxiety, one for pain. We just had to put a drop under his tongue to help alleviate any symptoms. They were all about keeping my dad as comfortable as possible, no matter what. We ended up only needing the anxiety medication and it seemed to help a lot. The liquid version is a blessing because it is fast acting and super easy to administer instead of having to have them swallow a pill.
As for the end of life stage...your dad won't be moving around at that point. He will most likely be in bed the entire time and will stop eating and drinking altogether. He will probably sleep for many days, very peacefully, before he passes. We had often reflected how amazing it is just how long the body can go without food or water.
As to whether or not to call your siblings into town...speak to the hospice nurse. You should have a main nurse who is the case manager, not just CNAs coming in a few times a week. They will have an idea of how much longer you might have. Of course if your dad does get to the final stage, he will sleep the majority of the day and it might be harder for your siblings to be able to communicate with him. I don't know how much flexibility they have with their schedules or if they can drive to see him or have to fly. That's another thing to consider with all the Covid protocols in place. It's such a painful time and having the complications of a pandemic thrown in have made our situations that much more difficult to manage.
I will you all the best and peace for your family.
The meeting also helped Mom face the sad reality that we are very close to his final days.
I also took care of my sister the ladt 3 months of her life until she died of Cancer.
Usually before death they will stop eating and drinking and they will also have a weird breathing called a Death Rattle.
Your Dad could be dehydrated and the restlessness could be boredom. As far as crying out it could be him dreaming or he could be in pain so make sure to ask if any parts of his body hurts as you point to the body part.
Mare sure he is urinating as after not urinating just a couple days can cause kidney failure.
Prayers
I'm not a Dr. But I think your dad may be in the middle of his battle.
I hope this helps you....just keep a close watch on him.
Her decline seems to have happened overnight. She was walking with a cane until she broke her hip, then it has been downhill from that point. Now she uses a walker and moves at the pace of molasses. She also does not know how to get to various rooms in her house. She also has aphasia and speaks very little. When she does speak, it most often makes no sense at all.....jibberish.
The main difference I see is that my Mom has conversations, yelling, messing the covers up, moaning, coughing and general agitation EVERY night and has for quite some time. Other than dementia, she has no other serious medical conditions. And, I don't think she is dying. That thought has never entered my mind. Maybe I am naive, but I think this is just part of the progression of the horrible, devastating disease. Recently when Mom started acting even more bizarre, turned out she had a UTI for which she is now being treated.
I will be anxious to hear how his situation progresses. I know every situation is different but please post here to let us all know what happens.
As for dying, most older folks tend to stop eating and drinking. They become very sleepy and difficult to rouse. Eventually they die in sleep. Usually, this is about a week after they stop taking in fluids.
Along with my two siblings, I took care of Mom 24/7 for 11 months after failed surgery. Everyone is different of course, but looking back, her lack of appetite was the first sign. Main sign for her though was when she became bed ridden. That was two weeks before her death. She became very agitated, especially at night. She would talk while no one when no one was there. She was still lucid, but became less so for longer periods. As it got closer, she stopped eating. Still wanted some sips of her favorite drink here and there. She did have that final rally they tell you about. She was very clear that day. Ate like a champ (she hadn't eaten in days). Had us children line up, and she thanked us one by one for the care we had provided her. Later that day she fell into a deep sleep. She woke one more time, and I was lucky enough to be there. She whispered to me she was dying. It was the last time I cried on my mother's shoulder.
I pray your father, and everyone goes quickly. Watching the minute by minute death of a loved one is beyond imaginable. What happens to the body is more than I had prepared myself for. Nothing like the videos or anything I read. Although torturous and unbelievably difficult, being there is the final gift we can give our loved ones. Told Mom she was there when we first drew breath, and we would be there as she drew her last.
If you'd like more details on what to expect, or if you have any questions during this journey, or if you just need support , you're welcome to email me: prg8681@aol.com
Thanks to all of you who sent caring thoughts my way.
I am so sorry. Please assist them in keeping your Dad comfortable. I think you recognize that he is indeed dying now; there just is no way to give you a time and date. Much depends on the systems of his body, heart, lungs and kidneys, and how long they can keep things going.
https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/When+Death+is+Near.aspx
The article was very informative.