Dementia and Hospice: The Who, What, When, Where, and How of hospice
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- Опубликовано: 9 сен 2024
- Welcome to the place where I share dementia tips, strategies, and information for family members caring for a loved one with any type of dementia (such as Alzheimer's disease, Lewy Body dementia, vascular dementia, frontotemporal dementia, etc.)
In today’s video, I’m talking about everything hospice. Hospice is a word that comes with a lot of emotion. There is a lot of confusion and misunderstanding. I hope this video can help clear up some of your questions and give you an idea about whether hospice is right for your loved one. Be sure to watch to the end so that you can find out if your loved would qualify for hospice.
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In case you haven’t met me, my name is Natali Edmonds and I am a board certified geropsychologist. That means that I am a clinical psychologist who specializes in working with older adults. One day, while hiking a trail, I came up with the idea for Careblazers and I decided to see if posting videos online could provide help to the many other Careblazers in the world who don’t get to have help come directly to them in their homes. I hope that this work helps you in some way on your caregiving journey.
#careblazer #dementia #dementiacare
I just went thorugh this phase with my mom, she passed on in July. I still follow you because it gives me closure but at the same time I am still learning so much about dementia.
Thank you. My husband with dementia fit the criteria when he started aspirating and stopped eating food. He only eats popsicles. We are in week 7 and Hospice has been like the Calvary coming to the rescue with care. I am still the main caregiver, but it's been so wonderful to have support in the home. We are 8 years into the disease.
MsProfessorC is
I'm glad you have hospice for additional support now. Sending strength your way!
Thank you.:-)
Just want to thank you again for all your support. My dear husband with early onset dementia was in Hospice at home for 3 months and passed peacefully at home in July.
I’m taking care of my 76 year old mother . She is incontinence, major trouble walking , coughs when eating but refuses any medical care , refuses to shower even with my help , she had pneumonia and I begged the hospital to evaluate her . No one has diagnosed her with dementia. While she was in the hospital I took her house keys to walk into a hoarding situation not to mention feces and urine all over . She’s fallen 3 times . How is it possible that no one but me knows and I called her primary to explain everything I’m dealing with but he explained she knows her rights . I have absolutely no help and had to take FMLA from my job but that only lasts for 16 weeks . I can’t possibly work especially her up roaming and shuffling . She can take care of herself anymore and just refuses help . What can I do ?
My father's journey ended last Saturday morning, the day prior to Father's Day. I have a better understanding of how Alzheimer's systematically shuts down the body. The person stops eating and drinking, becomes less responsive and sleeps almost constantly. Breathing becomes more labored and eventually everything stops. His hospice was at his nursing home room and they were an enormous help and support. Thank you Natali.
Wishing you and your family comfort as you enter this new stage. You were a great Careblazer to your father.
This is exactly how it happened for us. Thank you for this comment. I have played it over and over again in my mind not knowing if I could have done something to prevent it.
Tried to tell my sister moms on hospice I told her it isn't just about dying it's about living comfortably
So I told my sister and I have helped with Mom and they're coming to the house and she said I'm going to have my lawyer contact you she's always trying to get me arrested while I care for my mother
Thank you for this info. My dad began receiving hospice services this past may but I wasn’t aware of the life expectancy criteria of 6 months or less. This gives me more insight.
Something to remember about hospice - there is no medical intervention if something happens. My dad was in home hospice so i know. He had a feeding port into his abdomen and they said even if it comes out, they are not allowed to put it back in! Zero medical intervention. No CPR, no stroke help, nothing. You need to be prepared for that if you choose hospice.
Yes Joanna, this is very true.
What are the stages of vascular dementia? My husband is now bedridden , incontinent, and slurs his speech to the point that he is not understandable. He was in the hospital for six weeks wth pneumonia and came out with a terrible bed sore with a hole in his sacrum. I did not want to put him in a nursing home due to Covid and his fragile state. He needs 24 hour care that is costing me a fortune. I can’t really afford it as it will drain me. Is he ready for hospice as the doctors told me he would only need 24 hour care for a week. It’s going on three weeks. I was misled. Please help as it is only him and I. We haven’t any children and am finding this so overwhelming even with aids as I have to help them as it takes two to care for him. Desperate!
I wish I had these videos when my aunt was in the nursing home with dementia.
How do I get him to let me assist in changing his depends?
Just watched, thank you. Getting ready to go to Patreon site now as I am a member. I’m wondering since this video is 2 years old, is the 6 months or less to live still a criteria? I’m understanding that it’s a possibility the criteria may be different with dementia patients such as my husband who has Lewy Body with Parkinsonism’s
I chose not to go with hospice because my moms Medicare would stop paying for the incontinent supplies she needed. Hospice is supposed to provide that but they do not always and there is no guarantee( I worked as a hospice nurse) they do provide pain and anxiety meds towards the end of life it’s just something to check into
I'm finding out that hospice doesn't always provide supplies. It depends on what supplies they have, like incontinence briefs, barrier cream, hospice beds, as they are limited in numbers. But any special equipment required is provided, wound care nurses are available, as are hospice nurses, even a social worker who is there not only for the aging loved one, but for family members as well. All around it is still an amazing support who understands what we're going through and are there to help us with the process. I'm thankful my mom is at home with me. Especially now with covid infecting LTC homes, I have peace of mind knowing I can lower her risk of getting infected. I feel strength in numbers really helps us travel through this end of life process.
Natali, Thank you so much for this. My father currently in the hospital also (likely) in stage 7 with A-Fib, not eating, dysphagia, incoherent, etc. Our recent choices offered by two cardiologists are to insert a pacemaker or send him back too the nursing home and contact Hospice. So far, this is the most difficult stage of the disease.
My heart goes out to you and your family, Michael. It is certainly difficult.
My mother’s physician recommended we consider looking into Hospice for Mom, who has Alzheimer’s, based solely on her regular weight loss over the past several months. Does this sound right? Or might I have misunderstood?
Thanks!
No problem!
Thank you ,this was helpful and informative. If a loved one with Dementia Alzheimer’s needs to be moved from independent living ( that has many supports in place) to a facility ~ How does Family/caregivers determine if their loved one should be placed in a memory care unit versus assisted living?
Typically, memory care is needed if your loved one is at risk for wandering away and getting lost. If your loved one will want to "go home," want to leave, or is so impaired that they cannot take care of their basic needs like walking, dressing, bathing, then memory care is usually chosen over assisted living.
My 91 year old mother was put in hospice 8 months ago, when she stopped eating and taking her meds, and her blood albumin levels were low. She eventually started eating and stopped losing weight, and her albumin levels went back to the "normal" range. Her Dr. removed her from hospice and took her hospital bed away and wouldn't replace her broken whel chair. Texas
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Our hospice kept our loved one on hospice despite similar story....sorry this happened to you😢
Thank you
How can you tell your loved one has 6months or less to live?
That's a great question! There is no real way of knowing. Doctors come up with this estimation based on their experience and what they know of the diseases. Research shows that people are really bad at guessing how long someone has left to live. The doctors just do the best they can and in the event of dementia specifically, they use the FAST score to come to that determination.
Thanks this was really helpful
Glad it helped
This video is extremely helpful to me. Maybe you spoke about this in this video but I'll ask anyway. How do we go about asking for Hospice care - who do we talk to about that. I'm guessing it would be the Patients doctor who would then consult a Hospice doctor? Is it the hospice doctor who administers the FAST score tool or is that tool a prerequisite to contacting hospice.
Yup, talk to your loved one's Primary care doctor. If they think it's appropriate, they will refer to the hospice people and the hospice doctor will determine if your loved one qualifies. Sending you all the best!
Dr Natalie, how long does it take before ones (on average) LOWD advances to stage 7 or above
My mom is in a personal care ward of an assisted living and gets help with showering, eating etc. she meets all the listed criteria accept she can still walk. Do I need permission from the assisted living to bring in hospice ? I am concerned about her anxiety and if she’s in any pain? She can’t tell us. Thank you so much!
I had my mother's memory doctor suggest she goes on hospice while she is still in good physical health, walking, talking and eating. No problems except for middle stage dementia. I am disturbed that she is trying to hasten my mothers death. How would you translate the doctors suggestion of hospice? I was told on her last visit she could live another 7 years. Why would the doctor suggest hospice if people should have only 6 months to live?
This is the one downfall of the hospice program that makes me sad. Once our loved one is placed in hospice or palliative care, some important facts come into force. With my mom, her strokes did some left side damage, and also resulted in initial dementia. She wasn't expected to survive more than a month or two. I've been providing 24/7 care to her in my home. After 11 months, her doctor evaluated her and decided to place her in palliative care, which to my surprise is no more lifesaving procedures if any organs fail, so then it becomes a waiting game of sorts. I did not know that until the hospice nurse came by and dropped off papers to sign and information pamphlets. If kidneys or liver fail, no dialysis, etc. We do have a DNR on our fridge, but I thought it was for not responding to a heart attack or another major stroke. So be sure you're ready to walk the hospice road, as that's why it is an End of Life program. 🌹🙏
I have a 24/7 caregiver that takes care of my mom with alzheimers. she does a fantastic job. what benefit would hospice give above and beyond the great care she already receives?
What do you do when patient doesn't want to live...she is 92 overwhelmed with a nervous condition
I guess it all depends on her condition. Is she genuinely declining and can you see she'll not be improving? Many elderly loved ones get really frustrated with their lives when they know life as they knew it has changed and may get very challenging. Depression is very likely at this stage. Sometimes that can be helped through therapy and meds. Quite often people want to give up when life gets unhappy and they see no reason to carry on. With my mom, who is 90 and has had a series of strokes which left her almost paralyzed on her left side, she went through bouts of wanting to die. We talked through her feelings, kept as much of the conversations as positive as possible and after almost 11 months, now seeing deterioration growing more obvious, she is revisiting thoughts of not waking up one day soon. Also, the dementia is more pronounced now and is influencing her judgement of what is left in her life to live...this is where I have to be strong in my support to her and have to allow myself to love her enough to let her transition into her end of life. Now, after 11 months, after trying her best and appreciating all the extra time we had together, I believe this process has prepared her to let go. Her frail body has been giving it's best fight, I believe. Much has changed with her in the last two months. I believe we've both been prepared. This is not an easy process. My prayers are with you. 🌹🙏
Does Medi-cal pay for Hospice ?
A+.....xoxoxoxo
Dr Natalie, I would like to talk with you about setting up a nonprofit. I believe it could be an opportunity to leverage your reach and help expand 1,000's more blazers. Keep your for profit, yet add other benefits under the nonprofit umbrella. If you want to chat, I am here. Doug Scheidt, Baltimore, MD
Hospice is shady as Fk! I’d rather suffer in the woods dying naturally than hospice bullshit !
wow that has not been my experience with Hospice at all
ok do that then