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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?

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I'm so sorry you're going through this. I know how stressful witnessing decline is. I combed YouTube to educate myself on end stage dying. I discovered no matter how hard you try to prepare yourself, nothing can really prepare you.

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
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OkieGranny Aug 8, 2020
I almost cried when I read this. What a beautiful, touching story.
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Please let hospice know that he is having this pain so that medications can be administered to get him below the level of pain. This is basically what they are there for. I think that you may know, once Hospice comes in, that death is coming more near. It is difficult to judge when to call out of town relatives. You could do so but that doesn't mean they need to wait until Dad is unresponsive and very close to death. They can come now when he may be able to recognize and speak with them, and then return home. Do discuss with hospice as they are your best guide in this matter.
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.
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swanalaka Aug 5, 2020
Thank you Alvadeer. We have anti-anxiety meds here, and morphine. We've given him the anti-anxiety a couple days and I think it's time to use the morphine. He is so uncomfortable. Hospice is here in the morning.
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I worked as a hospice volunteer for a while. I would echo the suggestions to discuss your father’s agitation with the hospice nurse, so that pain meds can be adjusted if needed. That said, we often saw a burst of agitation like you describe from patients shortly before their passing. One nurse described it to me like a passenger on a train that is arriving at a station - the passenger wants to jump up and collect all their things before disembarking. It’s difficult to see. I tried to remind myself that it was not about my discomfort, but acknowledging their process. Love to you and your father during his transition.
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Reply to Libbby
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Ask the hospice nurse what stage he is in based on your descriptions of what you’re seeing. At the end he will lose all desire for food and not eat at all, sleep much more, and not communicate. The hospice should provide meds to help him be calm and not agitated. I wish you peace in this, I just did it and know it’s not a road that’s good to walk
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swanalaka Aug 5, 2020
Thank you Daughterof1930. Hospice has provided anti-anxiety meds and morphine. My Mother got the instructions from the Hospice nurse,and understandably is unclear about dosage etc. I will be here tomorrow and get the info.
Thanks to all of you who sent caring thoughts my way.
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I'm so sorry for what you are going through and I know many others on the forum have experienced end of life, myself included.

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.
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swanalaka Aug 9, 2020
Thanks for your input and kind words. Our meeting with the Hospice case nurse and a social worker was so informative and helpful. They are all so gracious and gentle. Although everyone is different my Dad seems to have entered "active dying" with maybe just 1-2 weeks left. They gave us a booklet explaining what to expect during the last three months or so.
The meeting also helped Mom face the sad reality that we are very close to his final days.
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My father died at home in May (non-covid related). He stopped eating on a Saturday, was incoherent by Monday, and and died Thursday. We had wonderful nurses from the VNA (rather than hospice) who guided us through the death process. They gave us an informative pamphlet about the dying process, which was very helpful.

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.
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swanalaka Aug 9, 2020
Its amazing how the dying seem to wait for their right moment. When family has visited, when all alone, after a baby is born.....I guess deep down on some level, everyone decides their best time.
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Contact hospice and tell them what's going on. Also ask that they do a urine test to be sure you have ruled out a UTI - those can change someone behavior and confusion level quickly. If no UTI, then there should be something to give him to make him more comfortable. If you get no where with hospice, call his doctor.

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.
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swanalaka Aug 9, 2020
Thank you twocents.
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.
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My heart is truly with you. Our 92 year old mom died June 9th after about 3 months of this "end stage". But not knowing how long it will go on is frustrating and puts lives on hold.

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.
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Do Hospice nurses visit him at home? This is something you can speak to them about. With my 96 year old mom, they always ask me if she’s eating and drinking. When I asked them about that, they said usually when the patient stops eating and drinking, that’s a sign the end is imminent. Good luck!
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goldie1 Aug 8, 2020
yes when mom just said im not hungry and im not thursty thats the digestive system slowly closing down, dads last days were spent in a nursing homae with a bag attached to the urinary tract which was slowly turning red. he jus t stared straight ahead pupils slowing getting sdo maller. nurse said that the brain slowly shuting
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Imho, you should let the Hospice nurse know about the pain he is having so that medications can be administered. Prayers sent to you.
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swanalaka Aug 9, 2020
Thanks for your much appreciated prayers.
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.
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