This is when Alzheimer's Dementia leads to Hospice Care

This clip from the recent Alzheimer's dementia video goes more into depth about Alzheimer's and Hospice.

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.

[JohnPaul-hmys]

My dad had early onset at 54. I had just graduated high school. My mom and I were primary caregivers for a year, but his progression was swift. His last words with me were in 1983. When nurse asked him who i was, his response was "i don't know, but his very nice". I cherish that memory because he liked me. 8 years later he passed after a long period in a fetal position, he was just a shell of who he once was. I don't regret all those visits, somewhere deep inside i needed him to know he was loved. My real memories of him are of my youth; and of course, the fact that he liked me.

[KentDorfman]

My mother passed away from it in 2010. She basically died from pneumonia. I would not wish it on my worst enemy. It's such a horrible disease.

[karinparsons]

Mom died last month from alzheimer's dementia. Such a very sad end to her life. She was such a wonderful lady. Alzheimer's stole everything from her.

[klcpca]

If I am ever diagnosed with Alzheimer's, I pray I "keep it together" long enough to end it on my terms.... I DO NOT want my family to suffer from my demise. I have taken care of many pts with Alzheimer's/dementia.... what a horrid disease....

[jackzimmer]

My wife has early onset Alzheimer’s. Her father, who was a brilliant man, also had Alzheimer’s. It is a truly terrible disease but I thank God for blessing me with good health to take care of her at home. He has also been there to keep my emotions and sanity in check.

I have not forgotten to take care of myself even ahead of my wife because if I’m not doing good it’s hurting her.

[indigobunting]

Hospice should be offered sooner in people with any kind of dementia.

[DC-fqmv]

I cannot thank you enough. This content is EXACTLY what I've been looking for. My mother has Alzheimer's and in early March, she aspirated, she is bedbound, and has to be fed and changed. I take care of all of her care needs. Your videos are outstanding and provide so much comfort and inspiration and most of all education. As you said regarding hospice care, the threshold for obtaining it is high and my mom is currently in palliative care. Thank you for all of your videos and information. I am so grateful to learn so much from your content.

[vivabella]

I’m a 85 year old lady, recently been told by my doctor that I have Alzheimer’s! I live on my own, as my two surviving kids live abroad. I look after myself, even despite having Rheumatoid Arthritis all my life. Not sure what is in the future for me, but I intend to live, as I have til now, as best I can. I do worry about the future, though.

[shanie]

My mother has Alzheimers and I really hope that she goes before she gets to this stage, I'd hate to see her suffer like this. She is very happy at present in aged care which I hope continues as long as possible.

[jordie]

Alzheimer's is such a horrible disease! My mother started showing signs around 2015 and is now bedbound in a nursing home . She rarely speaks but when she does she just repeats what she hears. She does still have a good appetite but has to be fed.

[jw]

Thank you for this video. My mother had Alzheimer’s and died at 84. She was able to mask it pretty well until 80. And it was just as you described. She could walk and eat and I would take her to church. Then one day she forgot about church and wanted to do something else. When the swift decline started it was in the last six months. One day she was walking, the next using a walker, within a week she was in a wheel chair. In just a short time she was bedbound. She talked for 3 days with no sleep. Then nonverbal. Next came liquid meals then unable to swallow and she died of pneumonia. There is no map or prediction of timeline. It is different for everyone. But she remained sweet til the end.

[stucklescrafter]

Please do more about Alzheimer at hospice

[lvlinda]

We had been dealings with Mother’s Alzheimer’s for about 8 years. As an only child & primary caregiver, I had made the decision early on to to keep her home for as long as possible. Watching her slowly decline was extremely tough especially the last 6 months of her life. (Dad had already past years before. Thankfully he didn’t have to see her suffer.) The Last month, Mother was in the hospital as she had a UTI. When she was finally released back to us, she was completely nonverbal and completely unable to move. The hospital said she needed to be in Hospice that this was the end of her of journey. I told them to bring her home where she could be surrounded by her love ones. The Hospice team was so amazing. Provided EVERYTHING we needed including 24 hr emotional support. Her Primary nurse walked me through every stage. I was extremely concerned when she refused to eat or drink. Nurse said this was perfectly normal. 8 days after Mother came home, she passed away peacefully. She was 93 years old. As sad as this sounds, I’m so grateful for that experience. It taught me a lot about who I am. Thank you so much for sharing your experiences as a Hospice nurse. It still brings me a lot of comfort as I’m still dealing with it all. Sending you lots of healing {{HUGS}}. ✌🏻💖🌺

[RETate-kkyi]

am in a tricky situation, where my mom is in a twilight. We are educated about death and dying, all paperwork is in place, and we give her food and water when she wants it. She still wants it and can swallow, talks to us in the mornings, but we see the gradual, slow progression. She is total assist after breaking her hip. She does need total care now. However, she is still “in there“, with periods every day of engaging with us, and enjoying a beautiful environment that we have here, and two long-term loving caregivers as well as myself. Here’s what’s tough for me right now, beyond the obvious.

Mom is in no way vegetative, is often alert, engages with us, has pleasure. But the message I am receiving from a family member who also loves her, is that because mom would not want to live this way (who would), anything being done for comfort care, could also be extending her life, and when I push, it gets down to the food and water. this hurts me. I feel we will know when that time comes because she won’t be able to swallow and she will be sleeping most of the time. She won’t have periods like today, where she is enjoying the beautiful day, the flowers, outside, etc. We are still palliative because she has not qualified for hospice yet. I suspect with my mother, it will be when she is sleeping most of the time. She has a very healthy body. She is still swallowing without aspirating. What I am struggling with is this idea that her continued existence is an injustice to her, because she would never want to live this way, and that, perhaps more sedation, which would lead to more sleeping, thus more decline I guess, would be more humane. And yet I don’t see her continued existence as an injustice to her beyond the fact that dementia itself is unjust.

I have felt, as long as she is not suffering, even in this cognitively impaired state, who am I to say her life does not have value. I struggle with this, because of the message I am getting that it would be kinder to look for opportunities to withdraw care as a humane gesture. When I press, that seems to be about food and water. I keep saying, we only give it to her when she wants it, but I’m not sure I am believed, or trusted when I say this. Because we ARE feeding her. She lets us know when she wants it or not in several different ways, and we totally respect that, but because of her tremor and contractures in her hand, she can’t usually hold spoon or cup. But, is often hungry and thirsty, still. We watch for those changes, we see that she is gradually eating and drinking less than sleeping more, and we are following that lead.

Believe me, I am not that family member asking for things like feeding tubes or full code on someone like my mother, we have all documentation from the MOST form to the DNR, she is signed up with palliative, who also have hospice as part of their agency and I am told it will be a seamless transition. They review her for hospice versus palliative, several times so far. She’s not quite there yet. Since we have all the supplies and equipment we need and regular visits from palliative, I have felt this was fine.

And yet this idea that I am somehow responsible for her continued existence with dementia, because we are giving her such good care, is tearing me up a little bit. It wakes me up at night. I don’t really believe it, but it is haunting me because there is someone in the family who does think this, i suspect.

And yet, I am the only one actually here, along with her caregivers, and this is acknowledged. There is support for that. I truly believe that our primary caregiver, who has cared for many dementia, patients throughout their disease, and through their death, will know. We talk about it. When mom has a bad day, we think, is this it? And then, my mom, being the bad ass that she always was, and is, bounces back the next morning. Less so all the time, to be sure, but we feel we are following her lead. And yet, it troubles me to think that there is an idea that the thing I am doing, the level of care we are giving, is perhaps seen as an injustice to her, because it is prolonging her existence. I think I know the truth of this, I don’t think we are doing the wrong thing, I believe we are following her lead in an educated, and informed way, but how can I speak to this twilight period.

She is comfortable and content, but yet of course she would not want to live this way.

I have also felt sad at times, that it feels like she has been sort of written off in a way, because she can’t be that same friend or family member that she always was. That maybe it’s either too painful for people, or they can’t understand that she is still herself and aware of when people come to see her (for example, when my daughter visits her pleasure is just so evident), or maybe both. That people tell themselves, well she doesn’t know who they are anyway. We try to explain, we can’t know anything for sure unless she tells us, but we can see by the look on her face that she is very very happy to see you so clearly she knows you are one of her people, at the very least.

When I have thoughts like this, it starts to feel so cold to me, that because she can’t give like she used to, she is sort of dismissed, and her person hood is not valued. And yet she has been on this planet for over 90years, and spent most of her life giving of herself to others in a generous and caring manner.

I may be the person who will be the most relieved, even in my grief, when my mother does shed this mortal coil, and become “everywhere, and everything”. I am not especially religious, but I do believe there is more than we can see, beauty, and mystery and awe. This experience has led me to believe in guardian angels, even though I don’t know exactly what I mean by that. Guiding benevolent presences.

I am finding this doubt, to be very painful, because the very thing I thought I was doing well, taking care of her to the best of my ability, is called into question . That doing a good job with the care, in someway is an injustice to her because it could be prolonging her life. Thickening her water so she doesn’t choke on it. Nutritious soups, and smoothies with fiber. Close attention to her skin to avoid wounds.

Has anyone else struggled with things like this during this twilight phase? We are almost there. She is sleeping more all the time. We know what to look for and will be ready. Well, as ready as anyone can be.

Nurse Julie you have helped me so much as has this community. Love to all.

[MelissaTempleton-sh]

Getting my father in law on hospice after he was diagnosed was the best thing . They help us and him more than I can say. Bless you all

[dianeduquette]

My mom died of Alzheimer’s in hospice I was so grateful for the care she got. Hospice is a wonderful place for the dying.

[ssjess]

I never thought about the loss of swallowing ability and Alzheimer's/dementia. I thought that was just an end of life symptom

[victoriaolson]

Not my late father-in-law, who at five years in was an uncontrollable flight risk with an electronic ankle cuff that served to tell staff where he was, which was almost never in his own room and often outside the building. His appetite was fairly strong, and he became notorious for eating the meals of multiple other patients.

[feliciarawls]

I can't express how much this means to me. Your words resonate deeply. My mother has been on hospice for two and a half years, and we've been facing Alzheimer's Dementia for over fourteen years. Every single thing you've described has happened to us. Today, she was placed on the watch list, and we know we are in the end stages. Your educational videos have been a source of comfort for us on this difficult journey. They have genuinely helped us approach this final stage of my mom's life with grace. Thank you so much for sharing these resources. We really appreciate it. 🙏 💜

[gracew]

I'm a professional in-home caregiver and I love your videos. I have cared for ppl in various stages of Alzheimer's Dementia including up to the very end. God bless you for educating the public about all things hospice. It's a hard thing to talk about or even think about but almost every family at some point will face the situation of having a loved one in hospice and it's good to know that you have created a concise accurate resource for this kind of information. You are doing important work not only in your local community with your occupation but also on a large scale with what you are doing on social media. Thank you. Keep up the great work.👏😊