Quality of life in end stage dementia
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- Опубліковано 25 чер 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 talk about how to keep a focus on your loved one’s quality of life in end stage dementia. It’s based on Dr. Powell’s book, Dementia Reimagined. In the book, she dedicated an entire chapter on how so many older adults with dementia die in a way they don’t want (in a hospital, surrounded by strangers, hooked up to tubes, etc.) because more and more medical procedures are being done. She encourages everyone to focus on interventions that relieve suffering rather than simply prolonging life without consideration for the impact it will have on their quality of life. Although this is a difficult topic for many Careblazers to talk about, it’s important and something every Careblazer will face. I hope it can help you in some way.
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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’ve come to think of dementia not as a disease, but as an end of life process; a very, very slow death all by itself. It’s like being in an exceedingly slow motion train wreck, one that can last years and years.. Once ‘the event’ begins, there is no stopping it. Moment by moment, cell by cell the person is slowly leaving this world and that each lost cell is dead and gone forever. With each loss there is a tiny mourning and at some point, enough essential cells will be gone and basic physical life will no longer be supportable. The body will finally be allowed to follow the consciousness, which has gone on ahead. The entire process becomes a journey from one’s peak life consciousness to beyond. At the beginning there can be a measure of understanding, eventually it’s all gone. Only one part never has to leave and that is the love ...that part can grow and expand forever and ever.
When it begins there’s a lot of life left - mentally, physically and spiritually, so helping his trip be as pleasant and beneficial as possible is my main goal as a care giver. Today he is as alive as he will ever be, tomorrow it will be a bit less. Even though with Lewy Body Dementia there are ups and downs in functionality...he is actively dying and each day a few more cells ‘go’.
Thank you for what you’re doing, it really helps me to reflect on what’s happening to my husband and to respond more compassionately and avoid automatic reactions that are not helpful.,
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Bless you and I wish you well. Mine has dementia. Has gotten where he forgets his kids names , seems like I see changes everyday.
Keep strong. I'm a student looking to get into support and psychiatric care. I don't have experience of dementia, though I do of other mental illnesses in a professional setting. Thank you for sharing your story, it will help me to understand how to support people better in my future work.
Elizabeth that was so wonderfully and accurately expressed. Thank you for that, it will help many to understand our challenge. (I must say, you're quite a talented writer. Once your husband transitions, I think you ought to write a book. A love story of you and your dear husband's journey.) The public needs more awareness, more literature on this growing pandemic, which, for the moment, is being swept under the rug because the elderly don't matter so much. But the younger generations who don't care now? They'll care soon enough. When their day comes.
"The body will finally be allowed to follow the consciousness". That was an absolutely perfect way to describe the dementia process. Thank you for that insight.
My Mother had advanced dementia and she passed away early December 2020. And I feel that Dementia took over her mind but never her heart. All your videos guide me in so many positive ways. GOD BLESS YOU💜
My mom has dementia and I’m not handling it well at all. I love her so much and hate to see her suffer😢. I cry all the time, she doesn’t remember my son and I anymore. She just sits with her head down now. I miss my mom so much, I miss how close we were, our talks, her advice😢. I don’t want to lose my mom
HI Erica, This is Trisha. Dr. Natali's social media manager. I'm sorry to hear about your situation;. Here is a UA-cam video she made that I hope can help you with your situation. 💖 ua-cam.com/video/okC9hdCppvs/v-deo.html
@@DementiaCareblazers thank you 🙏🏼
@@DementiaCareblazersoiooppo😊😊
Check in with the attending physician regularly and get their advice on when to call on Hospice, I regret not doing so sooner as they were caring, compassionate and immensely educational in advising on stages, what to expect, medications to alleviate anxiety, and tools such as bedpans, walkers, bedside commode, bed protection etc. They were on call 24/7 and came at the end to help prepare my guy's body for the mortuary. I don't know how I would have functioned without them. (Medicare paid for all of it by the way)
How do we know when to contact hospice,? With Lewy body disease they say it is like a roller coaster in their ups and downs. I don’t know what to expect, and I don’t know when to hospice.
My wife just passed away and she passed with loving people around her and in a beautiful setting. We were very fortunate to have Ohio Health Hospice Care. At the end Grace went into Kobacher House which is part of hospice. They and my daughter helped me see that the best thing we could do for her is love her and make sure she was comfortable and I think we did that. I didn’t want her to go but I had to let her go. I think I did the right thing for my beautiful wife.
You did. You did the right thing. You're a very strong person. Love to you and your daughter.
Very sorry for your loss
Walter Schiller I’m so sorry for you and your families loss. I pray comfort for y’all.
Great topic Dr. Natali, and you articulated it very well. I think the core question is "Does the Careblazer want quantity or quality for their LO?" If they are set on quantity, and that is unchangeable, the LO is in serious trouble. All Careblazers MUST come around to the belief that quality, no matter how short the lifespan, is the only humane, kind, loving option. I've seen people mourning the death of their loved one with dementia, when really, we ought to be mourning each day that they are still alive. Dementia is a terrifying experience. The book, the "36 Hour Day" will shock you and make you cry to know how your LO is really feeling on a daily basis.
This was just the topic I needed to hear tonight! My father is in his final stage and we’re engaging hospice this week. I’ll be relying on hospice to bring forward comfort care measures. Such a difficult time…I have an amazing father…It’s really my honor to walk this journey with him. ❤️
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Thank you so much Natalie. While my loved one is not yet there, her continued slow decline tells me that it will come one day and I need to know how to relate to these issues.🧡
me too with my husband
Thank you. I’ve watched your videos all along my mom’s journey through dementia. She just passed in our home which was her wish. This video helped me in knowing we did the right things by her even though she died prior to getting hospice care. My husband & I were her loving caregivers. We were trying to get that set up, but she walked into Heaven to her precious to Jesus, Lord & Savior, and was greeted by so many gone before. We will miss her so much, but I’m so filled with gratefulness for His mercy as she is no longer in distress or having to deal with dementia. Thanks for your input through these videos for our journey.
I agree with Dr. Natali on this issue. After going through a sleep study, etc., my 80 year old husband with stage 4 Alzheimer’s was told he needs to use a bi-pap machine and mask at night because he has sleep apnea. Although treatment for sleep apnea is good for some people, my 80 year old husband has tried wearing the mask at night and it caused more issues with not being able to sleep. He was constantly getting up, taking the mask off, trying to get it back on... We mutually agreed he would not use it and declined treatment. We had to sign papers stating we were refusing to abide by our doctors orders. We feel comfortable our decision was the right one considering the circumstances. This is where I think quality of life should be considered before treatment of underlying issues. Great topic Dr. Natali! You gave me peace of mind. :)
Quality of life is important.
My Dad has been placed in hospice care as of last Friday. He has late stage Alzheimer's 😟 This is helpful, thank you!
I told the hospice provider that I want to bring him home when he enters the dying phase. My Mom died at home, and I want Dad to be surrounded by love in his final days.
So sorry to hear. My prayers are with you and your family.
Thanks for being truthfull in this tough topic and one that is needed to be reviewed early with your loved one in the early stages of the illness. God took my wife in late January of this year and it was a very peaceful death and one she wanted and God blessed her in the peace she had. Thank you .
Before my mum was diagnosed with dementia or even showed signs she was suffering with it we had a discussion on how she would like to die, what intervention, or lack of, was her choice. Consequently she died as she would have liked, with the help of drugs to take away the pain and quietly slipping away with me at her bedside. This is a conversation I have had with my family and would recommend everyone to have.
I fully agree. I'm currently witnessing my father in-law suffering with dementia. at first it was just stuttering and repeating of words, and now he's chair-bound (couldn't stand up and walk without help), no longer able to speak, needs help with everything, but not bed-bound yet. I believe he's in the Late Stage.
I am terrified by this experience and if I (hopefully not) suffer this too in the future, i will say to my wife and family to pass away with the help of drugs before the dementia take hold too much.
I find the biggest immediate issue is dealing w the isolation of LO’s living in nursing homes,, assisted living facilities, etc. Would appreciate your thoughts on this.
I completely agree with quality versus quantity. Tough topic to ponder. Best to be informed and prepared for the inevitable. For all of us really. With or without dementia. Mom is at the end of stage 6 right now. Things are weighing heavily in our hearts.
Dr Natalie thank you for your time and your video
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Thank you, you reinforced my thoughts exactly.
Grateful for your videos Dr. Natali. God bless you ❤
I look forward to your quick lectures. This is such a tough topic, but you do an amazing job imbibing its and building our confidence. Thank you!
Thank you for doing this topic, sweetie. This was a good video for me.
Thank you. This is a difficult topic, but very helpful.
So wise.
Thank you for a kind, direct discussion about (vascular) dementia and how to care for a loved one. It refocused my perspective and shifted prioritization re end of life needs & planning.
Loved this video….u made me feel 100 percent better about how I feel…♥️
Thankyou, i understand exactly what ur saying. Mom had a heart attack, but she has 5 blockages one inoperable, so accepting the fate and provide the dr to take the other younger person the opportunity instead of taking that spot for mom. She would not have been able to get remember the limitations nor recovery needed and therapy if she had open heart surgery.
Thank. You for this video
My father passed away just before the whole covid madness started. He had advanced dementia, kidney problems, urinary tract problems, heart problems, stomach problems and the beginnings of COPD. I know in my mind that I did the best for him that I could. That with all his health problems that even the best doctors in the world in the best hospital in the world would have had a hard time keeping him with us. I know that he was past the point where I could have continued to care for him at home. I know that he needed around the clock care. I know that even with a nurse sitting by his bed 24 hours a day he could still show great speed when he wanted to get out of bed and go for a walk that he would be quick enough to get past that nurse. By caring for him at home I was able to give him as much time there as I could.
Both my brother and myself knew full well that he didn't want to live like this and that allowing him to pass on would be the kindest thing for us to do for him. We both knew that he wanted to be back with mum again. He'd asked where she was every day he was at home.
Thank you.
Thank you for helping me understand how to care my mum with dementia,. It has been a lifeline for my mum and my family. Understanding this disease has made a significant difference in her care. Thank you from the bottom of our hearts 💕
Dr. Natali is a wealth of great information and if she ever reads this thank you for sharing and educating us. She is spot on. My father had stage 4 cancer with 3 other fatal issues and his cartologist sent him for a stress test knowing that he didn't qualify for surgery and that his life expectancy was in at that point the month by month phase. My mother was being agreeable to these types of requests because she thought she could have him just a bit longer. Well, she did have him longer and his passing was horrific as a result. IMO he died as a result of the use of long term pain medication that affected his organs. Ever see a healthy looking heroin user? Get my point?
He had a do not resuscitate as his advanced directive and she had him revived 9 times from a heart attack. I don't hold ill will with it because as a care giver you have to make lots of ugly decisions and there is always someone wanting to criticize the care provided. Reality is you can't please everyone no matter how badly you want to. Needless to say I unburdened her with making my end of life decisions and picked others instead. Time for me to watch this video again.
I'm not afraid to die..I'm terrified of not outliving my demented spouse.. need to watch out for her..by at least 30 minutes
6:19 Good advice!
Hi Natalie I’m New I have enjoyed your videos...been so helpful...when will you have another free videos...I know you had one earlier think in August ...I recently my mom out of Nursing home ..I need speak with someone my mom also was diagnosed w paranoid psych ...I don’t have care givers very challenging..Thx
My dad is going to transition here at home. I don't use the word "die"in front of him. I have told him that his family will come to him in dreams and take him back home with them. He was born in Hong Kong and wants to go back to China so badly. I promised him that would happen when he isn't sick anymore. He smiles all the time in his sleep because I reassure him all the time.
@brade8430 couldn't have said it better. I just finished watching your video, and I'm in the same situation. Tonight I was told my husband is in the last stages and could pass at any time. He has a swollen abdomen for some reason, and I've been wondering what to do. He is on hospice in a nursing home. I want to find out what is causing it, but after watching your video, I've decided to let it be and let hospice do what they do--keep him comfortable and free of pain. Thank you for your videos. It felt like you were speaking directly to me tonight. God bless you.
My mom has dementia, she can’t stand on her own and is unable to get out of a chair or the bed on her own. She is now using depends full time, because she doesn’t know when she has to go to the bathroom. She knows who we are but is unable to care for herself in anyway even though she says she can. The doctors don’t know what stage she is in, all we know is her quality of life isn’t good, and it’s sad to see her fail. We are at a loss on how to get through this.
My mother in law is on end of life I’m so confused and can’t get out of my head she was ok 3 weeks ago yes she still had her dementia but she was alert and tiny connections she is final stages of dementia Tia though she was refusing to eat and drink she got an infection they gave her antibiotics which made no difference and she gone down hill fast is this normal within 3 weeks? Can’t take in that we are going to lose her anyway 😢 i don’t want her suffering though 😢
thank you
Can you do a segment on Dementia and Bruxism. My mother who has dementia, savagely grinds her teeth during waking hours ( not when she’s sleeping). She been cared for at home by me and aids. But the sound of the grinding is so loud that it’s hard to be around her more than 5 minutes.
To every caregiver here... if I were available to support you in this difficult situation, what would you want? Would it be just to have me listen? Would you want to talk through it? My instincts say it would be to help you decompress and reassure you, just to be there for you whilst you go through this. Any thoughts or comments would be appreciated. Thank you.
Some of us have loved ones in nursing homes or rehab centers that are under lockdown because of Covid-19 so we can't visit them. Could you give some tips to help with these situations? Thanks for your videos!
For my dementia suffering husband there was no way to determine pain, but simultaneous edema in his body & lungs dictated immediate medical intervention. Draining fluids, balancing salts & renal malfunction, kept his heart functioning. But this meant recurring hospitalisations with inevitable delirium impacting the dementia irreparably. In other words we were between a rock & a hard place. Hospital visits plus foreign aide & home medical care, brought him suffering to April. At which point I said enough is enough. Most of his last month was in an extremely peaceful, medical nursing home with our family in & out daily, until his heart gave up. There's no way to know how much of his suffering entered his consciousness. In good conscience we weren't allowed to shorten his life. Quality of life at this stage in Judaism is not the issue - continuing life is.
How do you know when someone is in the late-stage my husband has Alzheimer's and he is bedridden he no longer can walk can hardly talk he has been bedridden for almost 2 years I have to hand feed him because he can no longer feed himself he has lots of family that care very deeply for him and I take very good care of him always making sure he has everything that he needs It's just sad to watch someone lay like this when you don't know if they're in pain or not
Hi, my father in law is going through the similar situation like you said, he has been bedridden for almost 2 years, I really want to know how long will this last? I wish he can go to heaven sooner, not on the bed suffering .😢
I hope you can help with this , my mom is 80 with advanced dementia, her leg is hurting so bad she cries.. her primary dr says she should not have surgery because whe won’t be able to follow the derechito a for recouping and that the anesthesia will make her worst . What to do leave my mom in pain or do surgery
My Grammy (mom's mom) has been diagnosed with mild approaching moderate Alzheimer's as of March 2022...for now, she knows who we are, who she is, where she is and hates that we have taken her car keys..
I'm sorry to hear about your diagnosis. I hope you are surrounded with love and support.
What about feeding tubes? Yes or no?
Unfortunately my mom at 90 is healthy, no medication but Prozac for dementia .
I feel for you
They say don't let your loved ones suffer by keeping them alive but isn't death a lot worse than being uncomfortable with a feeding tube or other medical procedures. Let God decide the end not these doctors
Yes!
What is end stage dementia. My husband has vascular dementia. Since 2019
HI Nilu This is Trisha. Dr. Natali's social media manager. I'm sorry to hear about your situation;. Here is a UA-cam video she made that I hope can help you with your situation. 💖ua-cam.com/video/Z3NEeggRttk/v-deo.html
I'm 68 and I think maybe ..don't go to hospital...what's up that people that age are dying and others not...makes me wonder...Are you talking just about the ones with Dementia ..etc that are that age or older, or everyone. I mean does that include everyone or just over 65? Surely, 75% of the deaths of all that are in the hospitals are not over 65 !
pain?? what pain???
Right?!?
My 95 year old Dad can fall, his skin rip off, hematomas, and get up and continue on. I run in, and ask Daddy, what happened?!? There’s blood all over, he has NO IDEA. I’ll ask if it hurts, as I’m cleaning up the blood-NEVER. Never does anything hurt him. He feels nothing; remembers nothing.