Alzheimer's Dementia Hospice Care What to Expect

In this video on What to Expect with Hospice Nurse Julie, we talk about Alzheimer's Dementia and the different progressions that we are able to observe including the difficulty of Alzheimer's Dementia. Often times with Alzheimer's, it could be a long time before a patient is in Hospice Care and that can be a frustrating, difficult, and stressful time for the family. I hope this video gives you insight into what to expect from Alzheimer's Dementia and Hospice Care.

I love to hear your thoughts and look forward to the ongoing conversation around hospice care and education around end of life practices.

When dealing with any medically related events or medical emergencies, please communicate with your primary health care provider.

0:00 Introduction
0:21 5 Things to Know about Alzheimer's Dementia
0:40 What Alzheimer's Dementia looks like in Hospice
01:02 Alzheimer's is Unpredictable
01:59 Unpredictable Timeline
02:09 Bed Bound and Dependent
02:23 Presence of Infections
02:37 Observable Wounds
02:59 Difficulty Swallowing
03:15 Let the Body be the Guide

#alzheimers #hospice #hospicenursejulie

[ninashelley]

My mom lived 10 years. You described perfectly the reality. So hard on mom and our family. I was totally exhausted after she passed. Just recently I started to remember the good days. This disease takes everything away.

[donnablago]

Blessed are those who pass away quickly. RIP Dad 7/25/23

[mimiturbano]

Dad passed 4 days ago from dementia. Death is such a natural thing - but we have fear. I watched hospice nurse Julie’s videos to prepare for dads passing - started watching last year.

It took away the fear and shock, replaced it with empowerment because I saw the small changes in breathing - face - cheeks, skin etc. My sisters didn’t watch - they couldn’t look at dad the first 24 hours.

I was rubbing moisturiser in his skin, putting on special lip balm etc. I slept in a bed next to him and held his hand all night.

They DO feel us - dads breathing changed and heartbeat faster when we were holding his hand.

There were moments - even an hour when I saw dad connect his eyes - it was beautiful. Like seeing him pre dementia! If I wasn’t there I wouldn’t have had that beautiful moment.

MORPHINE MAKES THEM HOT - dad was hot so we had a fan in his room.

The DEATH RATTLE does not sound the same for each patient - dad had a lovely soft rattle - heard it in the room but not down the hall!

We all want a good death, but it was comforting and empowering knowing what to expect and I would happily sit with any dementia patient as they transition to death because it was such an honour to be with dad.

Be honest - tell staff you have watched hospice nurse Julie, I did and the residential care dad was in watched a couple of videos with me because they loved how calm and prepared I was.

Dads passing was peaceful, the sadness came when it’s confirmed. Before that, I was calmly reassuring my sisters that breathing can stop and restart - it did. Then I reminded us all this is what dad wants, a peaceful death and we are happy this was his experience.

My sisters gad been so scared, but I told dad I love him, when he lets go of my hand he will be holding his mums hand… it’s a beautiful place and he doesn’t need to feel scared, it’s ok to go.

I am broken hearted dad has gone but relieved he no longer battles dementia. My sadness isn’t in his passing, his memories and personality went a long time ago - I miss touching his hands, face, kissing jus cheek…..so my friends when dementia has taken everything but their breathe, hold the hand, moisturise it, put their lip balm on and in those moments, be present and make memories by caring for your dad and holding his hand and feeling his skin so it will always be in your memories- no regrets xx

[lindanelson]

I was a long term care nurse for 35 years before retiring. Towards the end of my father's life he developed alzhiemer disease. There was always one story he told me over and over about his service during the Korean War. His ability to play the organ made the difference between his going to the front lines to fight, and being assigned as chaplains assistant. Mom would try to shush him. I explained to her that story was very important to him, and as long as he was able to tell it I wanted to hear it from him. It was very hard on mom. I did all I could to help her understand the changes and we kept him out of the nursing home. Through it all he never forgot Wheel of Fortune. As the years passed he quit solving puzzles, then he could only figure out two or three letter words and then just guessing a letter or two. Even when he was barely able to form word he watched the clock when it was time for the "Wheel". The end came when he fell and broke his hip. The course from there was completely predictable. The only comfort is knowing he had a close relationship with the Lord and he's in heaven now playing the organ for a Heavenly choir.

[alcambrola]

I was a caregiver for my mom for 10 years. In 2009. she was functionable and could bathe herself and even be left alone for a few hours. Her meds were monitored, and I used to kid and say I was her personal GPS system. In the winter of 2018, Presidents Day weekend to be exact, she was hallucinating and even speaking in a different voice.
I brought her to the hospital ER and the doctor explained the same thing. He got a piece of paper and drew a horizontal line, then went in a downward motion with the pen. It was like she went off a cliff. She rehabbed at 3 different facilities for 37 days with new meds and adjusting the others. When she got back home, she was now incontinent and had to be monitored constantly and a totally different person.
I held on for another year and couldn't do it anymore. In July of 2019, she went into a nursing home. She went downhill pretty fast from there. She had lost her ability to swallow and was "pocking" her food and was put on a puree diet. In December, the nursing home had a mysterious virus that hit everyone. There's a lot more to this story that would make it too long. In the last week of December, she had Sepsis and pneumonia and sent to the hospital. Her kidneys shut down and she passed within 24 hours. The memory I cherish, is that even though she had Dementia, up until her last day, she knew my name and that I was her son. Thanks for what you do.

[Daniel_B_]

I am a grandson and currently my grandmother fell this past weekend and is bed bound now. It’s extremely hard on me. We are very close! I’m heart broken! I got her to eat chicken noodle soup today and write ✍️ a letter of my name. I did Christmas cards for all the family this past year from her in her hand writing. I’m not ready no one ever is, but their isn’t a grandma in the world like mine! She’s the best! ❤

[gjee]

Thank you for posting this! Brings back memories of when my mother went through ALZ. She (we) suffered through this for at least 11 years before she finally secumbed from her ALZ. After she passed, some people were wondering why we did not show much grief, it was because we grieved all the way along and her death was relief from all her

[brettlenertz_]

My mother was diagnosed with Alzheimers in January 2020 though there was signs of the disease about 18 months earlier. My mum entered high dependency care in May 2021 and passed away on 10 November 2021 at age 75. One of the most difficult things to watch as her son and ultimately her body was so dehydrated as she couldn’t eat or drink during her last 6 weeks or so. She didn’t know who I was for her last 3 months which was hard. Thinking of her today on Mothers Day 2023 ❤

[larakiki]

I’m a nurse here In the UK and currently laying beside my sweet Mama who Is getting ready to transition If not this evening, then tomorrow I believe 💔 I have had to explain to my dad that she is refusing sips and that needs to be respected, although it is heartbreaking. I think you’re just genuinely amazing for sharing and highlighting the importance of how dying well matters. This normal process needs more attention as It’s important as being both ❤️

[RoamsNFro]

Gosh, do you know or what? My mother passed away at around midnight today. All these steps are exactly like you said. It has been very difficult. I know my mom is now happy & whole!❤

[katlulu]

This describes my mom 100%. She followed that I had to figure it all out on my own and am glad you are here to help folks out now! I realized too late that my mom was "packing up" to move (?) and I'd see where she was putting clothes, jewelry, personal care items wrapped in tissue and shoved in shopping bags piled up on her bedroom floor. I'd empty it all out and put back in drawers and closet. Sadly somehow I missed her rings and fine jewelry she'd rolled up in Kleenex which either I or the home Heath aids tossed not realizing mom had wadded jewelry in. It's a good idea to be wary of your loved ones actions as they tend to "hide" or stash including food and medicines. We discovered my mom had been shoving used depends and pads behind stuff in her bathroom closet. The smell alerted us to the situation. Didn't confront her just made sure I checked the closet every day. It's a confusing and ugly disease.

[kristincazeau]

My mother is currently in LTC, and is very near the end. The staircase comparison you described has been exactly our experience. She has not recognized me in a very long time, eats very little, refuses fluids, is wheelchair bound & unable to communicate. Visiting is heartbreaking, she can’t keep her eyes open for any length of time. I’ve done all I can, but still feel guilt that it isn’t enough. My mother ceased to exist long ago, I now visit an empty shell that resembles who she used to be. It’s devastating.

[christinebutler]

I worked in a locked facility for people with dementia whose resulting behavioral disturbance had gotten them booted out of ordinary nursing homes. By the time you get them in hospice, they aren't doing anything at all, they're in a quasi-vrgetstive state. But I've been kicked, hit, choked, punched, cussed out, had full diapers flung at me, you name it. I quit working when my own moms dementia progressed to the point point that she needed me to care for her, which I did, full time, until she died of aspiration pneumonia. She had both Alzheimers and vascular dementia, and the vascular issues meant that she still was talking somewhat coherently, .recognized me, and was able to express her wants and needs when her.body gave out. Thank God for that. We were able to share music and watching a favorite concert on video just a few days before she died; she was also "with it" enough to receive the Sacraments before the final spiral, which gave her comfort.

[tonistark]

As an RN, who too worked as a Hospice Manager, Thank God for you in educating the public and others in hospice care. It’s not always what you’d think as depressing and sad. I learned a lot from patients in how to die with dignity and accept their death. This is a niche of nursing that is often “taboo” that people don’t want to hear about death and dying. What you offer is SO important and educational for those in hospice and ready to enter hospice. I find your videos comforting as well as educational. I’ve come across patients that when they hear the word hospice that evokes a negative connotation with death. Your videos enlighten all of us just how wonderful a service hospice is and what help and support we can give the family.
I can’t stress enough that what you provide is so necessary in offering answers so many people need. Thank you, Julie! ❤

[belindaa]

I'm my Moms caregiver..I work full time Sitter during day .I do the rest
It A 24 /7 Job..but when she has Clarity it WOrth the Struggle..I remind My self of the Scarfices she made Raising 4 Children..One Kidney and Crones ..She's such a Fighter...she bounces back All the time..

[michaelb]

My mother just died on April 28 from Alzheimers. She was first diagnosed in 2018 and her trajectory was very similar to what Julie explains in this video. I thought I was prepared for her death but I am still in shock that my mother is no longer with me and that I have to go on without her. I think the only solace I have is knowing she is no longer suffering. I love you Patricia you were a great mom. R.I.P.

[lonnievancura]

Thank you for this! My daughter and I love to watch you but we’ve been so perplexed since a few times Grandma has been through all the signs that her death was imminent and then she bounces back like nothing ever happened and at first we thought it was the rally but no she carries on! She just didn’t seem to fit the pattern you teach us about. When she does bounce back she resumes eating and she doesn’t have too much trouble with that. She chews very small bites for a very long time but doesn’t choke.
Sometimes she’ll sleep for days waking only for food. This week she has a day where she was so lucid it was like her old self. She remembered names and places and time frames but it lasted only about 5 hours and then while she stayed attentive and communicative she started slipping and then she slept for about 48 hours and returned to the state she’s been in of not talking much and being confused and acting somewhat babyish. It’s remarkable the ups and downs of if. We’ve learned not to get too upset over the changes. We just thoroughly enjoy the moments when she comes back to us. She is going to be 97 in August of this year (2023)

[aelaan]

Julie, it is my greatest fear... My "opa" had this and he lived until his 72 by himself. He went into an LTC facility where he went through the stair steps. He experienced WWII in a worker's camp and this came back to him frequently and he got so violently mad during this period, most of the time we did not know what to do, should we visit him or not. My dad was at his wits end as he wanted to help him, but he couldn't. Opa passed away at the age of 83, he went fighting and screaming, it was horrible. I was only 14 at that time but I remember it so very well. We had peace with it after the fact, no more pain and agony.

[fan]

God bless you nurse Julie. My father is 83, it's his 10th year since he was diagnosed with Alzheimer's. It has been very difficult for my loved ones who are his caregivers. It's very hard seeing him decline. Thanks for this video, it will be a great help to us.

[rickschwab]

May god bless you for the work you do and the knowledge you pass along to many many other people you will never meet. You are truly a gift from God.