I wish I would have known about the Macy Catheter when my mom recently passed with dementia. I will spread the word. Thank you for your informative channel. 🙏💖
That would have been a godsend when my wife’s great aunt and grandmother passed in our house. Sublingual sucks… You never know if you got it in and it worked. Thank you for your continued information. I’m sure I’ll be in that position soon…..
My father-in-law had dementia. He was 92 and living in a care home, where he was very happy. One evening, just before dinner, he said he felt tired and wanted to lay down. He laid down, and about 20 minutes latter, he passed away. I thought that was a pretty good way to go
10 years suffering Alzheimer's and 5 months post stroke my mother is bedbound with 99% speech gone. She is spoon fed about 1 yoghurt a day and 500ml of water. She is aggressive and argumentative when I visit. I was her carer for 9 years and her daughter for over 50 years. She is existing. She breathes. That's it. There is no quality of life of any kind. We were told she would probably die about a month after her stroke and it's 5 months today since she had it. I pray for her release and her suffering to end. To those caring for family I understand completely how brutal this journey is. My own mental and physical health were badly affected with the stress. My advice is seek and take every bit of help you can even if your loved one doesn't want it. You need to put yourself first now.❤
Yeah, that's how it was with my grandfather when he died after having Alzheimers. My poor grandmother took care of him until he passed. The thing you don't hear about much is how they get some crazy idea in their head and you cannot convince them otherwise. Also, a 100lb dementia patient can hit like a linebacker if you're not careful.
My husband is showing the beginning stages & I honestly can’t imagine having to be his caregiver. I think the stress alone will kill me first & to make things worse we don’t have a great relationship.
I know somebody whose sister-in-law had Alzheimer’s. His brother (82) was her caretaker for many years. He refused to put her in memory care because of a promise he made to her. She was on home hospice care for a long time, but he took care of her when they weren’t there. He was exhausted and stressed. The brother of the caretaker went to his home to take him to a doctors appointment and when he got there his wife was sitting in the recliner and his brother had passed away and was on the floor. She was sitting in the chair for hours. She passed away 2 weeks later. So sad, maybe if he had placed her in memory care he wouldn’t have had a heart attack. This scares me, I’m taking care of my husband, 6 years now and can’t imagine my children or someone else walking into something like that!
Silver Sparkle, Thank you for mentioning that it's important to take care of yourself if you're a caregiver. I've been my mom's caregiver for 10 years; our personalities are very different. It has caused some arguments which unfortunately mom has related to my siblings. The end result is hostility from them. I'm 71 and am beginning to physically "wear out" -- I had an injury that prevents my doing as much as I used to. Mom is resentful, and yet her thinking is starting to get adversely affected by age. Making decisions confuses her & she becomes angry. I think for my sake it's time I moved out and lived closer to where my adult children live. I know moving away will create problems for my siblings. I'm not concerned about their opinions. I just don't want to hear the accusations that I'm "abandoning mother." I think I've done enough.
@@OceanSwimmer, I believe I understand what you are going through. I've cared for my mom with dementia for over 10 years and I am nearly 73. I'm exhausted. My only sibling visits mom once a year at Christmas. He helps with nothing and wouldn't know how to care for mom if he had to. I have no one else to assist me as caregiver. Every year brings a decline in my own health. Mom is 99 yet I often wonder if the stress and work involved in caregiving will cause me to pass before mom. I pray you find a level of strength and peace. It's hard and so few truly understand. I understand. Be well. 🙏
My grandfather had dementia, but no one knew. He was a brilliant man. He knew something was wrong, so he started leaving notes all over the house. Every phone had a notepad with dozens of reminders and visual triggers. To the outside world, he still functioned because he sort of hacked his brain. Even the doctor didn't know. It was a hospice nurse who realized he was having short-term memory issues. She was an incredible advocate for him at the end and helped him have a peaceful passing. I was too young to help when he passed, but I will be going into nursing next year in the hope that I can help others in the same situation. This information is so important. Thank you!
Thank you for this video, Julie. It really hit home. My mom was diagnosed in her early 60s with early onset Alzheimers. She lived with me while undergoing a lot of the changes you mentioned. She became agitated all of the time. She lost any inhibitions she may have had. She yelled and cursed like she never did in her life. I finally had no choice but to put her in a nursing home, the last year of her life. I had a full time job, and was raising my children. She developed pneumonia, then sepsis. She was hospitalized, and fought with the nurses. She finally had a heart attack, and succumbed to complete organ failure. She was 72 when she passed. It's a horrible illness. That was 20 years ago, but I still remember it like it was yesterday. I'm 64 now, and can only pray that I don't get the disease. Thank you for all that you do. You are a true angel. ❤❤
My father had vascular dementia. He wasn't aggressive. He had delusions I went along with because it's no use trying to correct him. He also had macular degeneration. He would see things I couldn't see. He was still pleasant, until the end. He got sick and went to the hospital. He got better. Went back into the nursing home. He decided to stop eating. Instead of inserting a feeding tube, we let him pass away. He said he was ready to go into the box. It really sucked to watch someone who was in charge of things slowly deteriorate into an infant again.
My dad has dementia complicated by Traumatic Brain Injury (TBI). He is 83 and it seems each week that I see him his mental and physical state markedly gets worse. His voice is hoarse and he has had aspiration pneumonia once already. As an adult son watching his hero decline like this, it is heartbreaking to experience.
You have talked about 100% of what my wife has been going thru. BRISTOL HOSPICE has given me a mattress that moves my wife and has helped a huge with the bed sores. I have switched to most meals using baby food packs. My wife does enjoy eating those and they are good for her and most of all easy to swallow. My wife is advanced and we have to do everything for her. 44 years we have been to gather but most of the time she no longer remembers who I am. I still love my wife with all my heart. Thats why she is home and being treated by hospice so she can pass in peace and respect. Not like in a hospital or a care home. I would like to say god bless you and thanks for the videos. For me they have helped.
Thank you, Julie. 90 year old mother with dementia was placed on hospice care. She is no longer walking or making any movement. Her eating habits have also changed. She has started spitting out some food. She is also 80% death in both ears. She still recognizes and asks for family. Your videos help understand what's going to happen. I hope for strength.
My late husband was diagnosed with dementia. Not once, but twice. I was in denial because he was British and a lot of the questions they asked him were geared toward Americans. He ended up getting very mean and violent, causing a horrible situation in our household. I couldn't live that way and we separated. I moved to another state, but before I did he found out and moved there first. When I got there he needed help with paying bills, shopping and other things, which I did for him. He got into 3 wrecks in 3 months so I had to go to his apartment and take him where he needed to go. All this time I just thought he was getting old. Then I went to his place one day to help with chores and he was shuffling, not walking, and when I asked what was wrong he said he didn't feel well, so I took him to the doctor where we found out he had lymphoma. He was hospitalized for 12 days and when I picked him up I had to take him to where he would be getting chemo. On the way he asked where we were going and when I told him he said (after 12 days in the oncology ward) "I have cancer?". The next morning I went early to get some food as he had nothing in his place and had to eat before taking the chemo meds. When I came back he was still in the bedroom. I heard a loud BOOM and when I ran to the bedroom he had shot himself in the head. I have learned so much about Alzheimer's since he died and I am sorry no one took the time to tell me what to expect. I could have handled so many things differently.
I'm so very sorry to hear of your loss, it's very hard coping with such a situation. My father in law passed over two years ago on Dementia. No one was having it that he was ill, later on we're all wiser. What you did in supporting your late husband was just beautiful and I hope now you're doing well and definitely with no regrets. You should be proud of yourself. Wishing you all the best. 💖🌞🇬🇧
Thank you Julie! I am a caregiver for my mom who has been diagnosed with Alzheimer’s five years ago and recently with Vascular Frontotemporal Dementia which is affecting her movement. 🤦🏻♀️. I am grateful for your support. This is a very hard road. I am thinking the FTD will take her before the Alzheimer’s because her brain will just not tell her heart or diaphragm to work. I pray that this is the case. Her heart stopped several times about four years ago and she would just pass out. That’s when they put the pacemaker in. She told us at the time that she didn’t feel anything. One time it stopped for 40 seconds. That was what made them put in the pacemaker. I think it was God’s way of letting us know that the stopping of the heart or the diaphragm would be an easier way for mom to go. My theory anyway.
Your instincts are very sound. Your mom was lucky that you are so caring and open to learning. I hope you are at peace, knowing you did everything right. It's a true act of love to care for people at the end. Love to you and your family.
@@cl5470 "True act of love to care for people at the end" - so much said in so few words. In my part of the world there is a belief that young babies and very elderly are both divinity and an opportunity to care for either is equivalent to service to God. I was blessed with both opportunities and can say that it is very true
I work at an Eden cottage for Elders with Dementia. I consider it to be a calling. We are with our 12 Elders through hospice many times. Thank you for addressing this. It is an honor and privilege to care for these amazing people from the time they come to live with us, until they draw their last breath. I can’t tell you how much love, laughter and tears this job entails. Their families tell us we are a blessing to them. I see it the other way around.
Thank you for all you do 🙏. I lost my husband Dec 2022… wish I could have understood then, what I do now. It provides some level of comfort understanding what was happening and why. 🌷
I took care of my father in his last years of his most intense dementia moments and it was very difficult for me. He would get up during the night and just get out and walk away from our home thinking he did not live there. There was always a period each night where I knew he would stand up and say ''welp I'm going home'' knowing this was his home. There was no way of reasoning him and we would fight, sometimes physically, to make him understand this was where he lived. I think this is where your love for your parent is tested and it didn't help that professional kept telling me, after they visited to observe him, that he was ''fine'' and ''didn't need more support. Of course they were probably told to keep as many of them away from government care as possible. I understand that. But it did taxe the families a lot, as it did me. Thank you for your videos.
My mother had dementia from 69 to 84yrs old. She spent over 7yrs in a care home. She seemed to be an anomaly, because she never had agitation or anger throughout her dementia. Her last 10 days of life was very confusing and I was not ready to watch everything she went through, especially breathing changes. Thank you for making these videos, as I am sure this will help many people who are going through this process.
This is such a heartbreaking disease. My mom has been on a steady decline and can no longer walk, feed herself or recognize us but I believe she knows we are familiar. Fortunately she is able to live in a lovely memory care home and has wonderful care. To say I wish she would just go to sleep is an understatement. I know that sounds cruel but she would not want to be living this way. She is back on hospice care after being taken off once already. Love your channel..thanks for all you do!❤
The angry person was very hard to deal with when my Dad's Alzheimer’s progressed. He seemed like he would waffle between being angry at everything (even the news that he would turn the channel to) to being overly guilt-ridden over perceived wrongs he had done (making Mom sick). Irrational and heartbreaking. Thank you for sharing the mysteries of these illnesses. I wish I had known more beforehand.
@@badkatrising3918 I'm so sorry to hear you are going through this; yes, it IS horrible! We learned that it doesn't work to "correct" him when he was wrong or remembering things differently. Somehow, you acknowledge the feelings they are expressing and try to redirect, if possible. It's a hard lesson to learn. And absolutely NOT personal. Hugs
Thanks for the video Unfortunately we lost our dad in September who had demensia. He had most of these symptoms. After a 5 year struggle with dementia, And having heart surgery in 2018, plus diabetes. He passed away peacefully with his family surrounded by him. He died of pneumonia
Thank you as I stumbled onto your actively dying video last night. We were told by my mom's PCM last year that she appeared to be in the beginning stages of early dementia. A year and a half later and it's gotten so much worse in the past few weeks. We're getting 5 hours of care a week from the state and working on more needed care as when it comes times we won't be able to physically care for my mom due to our health and age. Every day now is something new and different to deal with and information you provide is greatly appreciated.
Julie, you are an American Treasure! As a longtime Hospice Liaison here in Milwaukee, I frequently recommend your RU-vid Channel to families, loved ones, and caregivers after we have a Hospice Conversation or Family Meeting. Your videos are a wonderful resource for those folks desiring more information or wanting to dive into deeper topics. As always, Thank You!
I've recommended Julie's channel to friends and family that have a sick family member with a terminal illness. I tell them how she inspired and helped me to be a great caregiver. Julie, you have something for everyone.
My mother in love passed away in April from Dementia. From day one that woman welcomed me with open arms in to her family. I feel blessed I had her for in my life for 42 years. Her husband was her primary care giver and he did such a wonderful job of caring for her. Your video's helped in understanding things we could do to make her more comfortable and better prepare for her passing. ❤❤❤❤❤
@lindawilliamson8979 I was always her daughter in love. I was 17, and my husband was 20 and in the Marine Corp when he was my blind date for my senior prom. His mom always welcomed me open arms and told my husband that if we had an argument, I would always have a room with her, and she'd take my side. My dad died in 1992 and my mom died in 1996, she was absolutely wonderful and I loved her very much.
I am the dementia patient. Watching videos like this makes me feel like I need videos for people like me. I am early, to mid-stage, and sure would like to hear from others like me. I’m 74 years old. Two years ago I was diagnosed with Mild Cognitive Impairment. I’ve now gotten worse. My eyesight has been getting worse every day. Neurologist said that my eyes are fine. The double vision etc. is because my brain is not properly processing the information from my eyes. And to top it off I have Ataxia…
Dear dementia patient, I just lost my mother at the end of April after a six year journey through dementia. My siblings and I did not have the opportunity to discuss with my mother what she was feeling or experiencing from her perspective because she was in denial. Please be open with your loved ones, and share your struggles, feelings, needs and wishes for the future. Figure out what comforts you, who in the family can calm you at times of frustration and make a list of activities that can bring you some joy in a day . The biggest thing is making sure your legal paperwork is in order. For the past two years my siblings and Zi have had to figure this all out on our own and work our way through the court system to protect assets. We are exhausted and reeling at a time of grief, and it could have been prevented. Healing light and love to you.
My late-80's mom has dementia. Just about to have to do the dreaded, "take the car keys away" song and dance. Since she lives to drive, this is going to be a huge battle. We're preparing in other ways, too. We've remodeled her bed/bath to full ADA capability. A big project, but her entire downstairs will now be wheelchair accessible should it come to that. We've installed smooth flooring, enlarged doorways, installed a super tall toilet, rearranged her bedroom to minimize trip/fall hazards, new lighting, and a huge walk/roll in shower. Lots of grab bars going in, too.
I just want to let you know that your videos were so helpful to me when my wife was dying from cancer. I sort of knew what to expect and when to expect it. Thank you so much for your insight and sharing it with us. May God bless you.
I am currently caring for my mother at home under hospice for end-stage vascular dementia. I sleep on the sofa by her hospital bed every night, as she miraculously finds the energy to throw off her covers and sit up in bed and put her legs over the side of the bed because she has to “pee” (she has a Foley catheter in). Sometimes this is up to three times a night. I don’t know how she does it, as she’s wasted down to nothing. Have given meds, but they only help for a few hours. I’m so afraid she’s going to fall and injure herself (no way she could stand on her own). About to give nighttime meds for agitation. Hospice nurse has already doubled the dose in one month. She comes tomorrow and am going to see if giving the liquid Haldol is the next step. I’ve just had to start giving morphine for leg/knee contractions. Takes her pain level down a few notches, but not entirely. I have to thank you Nurse Julie for your videos. Have been watching them for a year now as mom has progressed. I watch all, but especially like the videos on what some people experience at time of death. My stepdad died 22 years ago from cancer. He got that burst of energy two nights before he died. He was 100% his old self, up and wanting to take a shower and shave. This lasted a few hours before he went back to bed and became unresponsive again. He also said “mama!’ just before he took his last breath. It was very comforting……God bless you, Julie, for what you do! ☺️
Just have to say, Julie, you are totally awesome - thank you! I took care of my MIL w/Alzheimer's for 8 years. She was on hospice for her last 10 months and during her rapid decline in the last month of her life I learned so much from her nurses. They became my best friends during that time frame. Love and respect to all of them & to you, too! Keep up the great work!
I love your videos. Thank you so much for sharing your experiences and insight with us that have so many questions about end of life and hospice. You are a wonderful nurse. 💯❤️👍🏼
Congratulations on you getting a sponser. If anyone deserves a sponser it's you. You remind me so much of my brother's wife its uncanny. You're information is so helpful. Keep the videos coming. Thank-you!
I’ve been watching RU-vid religiously for over 17 years and your delivery and lighting and editing is simply flawless. It’s so obvious that you were made to do this work! ❤ I found you last week as my Father in Law is in his final days with cancer. Your videos have helped take my fear from a 10 to a 2 and that is how effective your content is. Thank you! 🙏🏻
I’m caring for my mother . She refuses any care . Refuses to shower , refuses to use the bathroom, refuses to see a Doctor. She can’t walk well , she’s starting to choke while eating . How should I go about some help ???
I hope someone contacted you. I have no advice for you but I’m at the beginning stages of this with my father. He never went to a doctor after he retired, yet became lazy and ate like garbage and gained more than 100 lbs and is now incontinent and beginning dementia. Thank God he’s not completely disagreeable right now and lets me take him to specialists all of a sudden, but many of his problems could have been prevented had he let us bring him sooner. Now he’s very large with dementia and very large with incontinence, which makes my job so much harder to care for him on a daily basis. And he’s sweet, thank God, but he didn’t used to be. I hope you got some help regarding your mother. This stuff isn’t easy, especially when they’re too old to make decisions for themselves. My mother in law was like your mother and refused everything, then one day we had to call an ambulance in the middle of the. Night and that was it. She never left the hospital.
@@LisaV751 apparently her primary I spoke to told me it’s gonna get ugly and I can’t force her to do anything but you know when to call 911 . That’s what I am waiting for something bad to happen and it seems so unfair to have to wait but that’s the situation now . I don’t understand how she doesn’t get a UTI for sitting in wet diapers it’s unbelievable. I do get mad and I tell her if you don’t change I’ll call an ambulance and you can tell then why . Her memory is good it’s everything else is just a huge decline . I’m happy your Father is at least listening and better late then never. I have to believe people like us will go to Heaven. Stay strong and thank you for all your kind words . I’m thinking she’s at stage 6 from my research and most likely it’s Lewy body because of her mobility as the feet aren’t lifting anymore.
Julie, Thank you so much for educating and preparing me for what to expect with my 91 year old dad’s functional dementia decline. I have the utmost respect for ALL hospice workers. You do the work of Angels!
My grandma who I took care of for 14 years got dementia so fast and went downhill from there. She just kept saying the name Norma. “Please Norma” and like over and over. She was so sharp all the years I took care of her. Had a meningioma on her spine this was the second surgery 20 years later. So being the second time in it was harder to remove, and they couldn’t ever remove all of it because it was so close to the spine. The second time in apparently some nerves were damaged, because when she went to rehab, she was unable to walk again without braces and a walker, which at 72 was so hard there was no way she could put them on her self and the physical therapist told us we should get her used to the idea of getting around in a wheelchair. wheelchair. The other thing was she had a neurogenic bladder now. When she came to live with me, they trained me to Cath her 5 to 6 times a day. That worked for a couple years. It just wasn’t practical. She had a male urologist. When we got a female urologist because she did not like the male urologist, he was very blunt and asked her if she was depressed and my grandmother was a proud Italian woman have a certain area where you don’t ask them if they’re depressed, especially so bluntly, and not knowing them. Suffice to say she did not want to go back to him ever lol. It turned out to be a good thing, because my female urologist was just all around better with their bedside manner. She immediately asked why we were Kathleen and that yes technically to cath would be ideal as far as bladder infections go, but the reality of the situation was having an indwelling catheter, would cut down on skin breakdowns, as well as give her more freedom and me more freedom, and save my back. We also got a Hoyer lift which helped tremendously for transferring her in and out of her hospital bed. We eventually got her a wheelchair van, which was very helpful as well. I was lucky to have a great relationship with my grandmother’s home health care nurses. In fact, one of them became my best friend and came to my wedding, and we are still friends to this day. Both of our families know all of each other as well. Luckily, she worked at the hospital when it came time for my grandmother. The care was just beyond what I was able to provide, and it broke my heart but skin started breaking down so bad I couldn’t keep up with new bed, sores, forming. I took her to wound care once a week. In the 14 years she had to have 2 flap surgeries. Those are really really hard on the individual. You have to lay flat on your back for like six weeks. They wanted to do a third one and dementia was setting in, and I could tell there were more bad days and good days, and it was only going to get worse. I knew my grandmother well enough after spending 14 years, taking care of her, but this was not good for her as much as it broke my heart to admit. Anyway, the wound care clinic called over to hospital and had her admitted. My dad meet me up there her son, it was a good thing I knew the nurse up there. The one that I became such good friends with. The hospital was looking to call adult protective services because of the bedsores. Luckily my nurse friend worked there and explained no. These people have changed their whole lives to provide good care for their grandma/mom. Also, the wonderful wound care doctors who even came up to see my grandma when it turned out these would be her last days to say goodbye to her. Also vouched for the good care provider. Even Cell it really hurt that people thought maybe she was being miss treated but after I removed my ego and personal feelings for a minute I realized that they didn’t know that and they have to look out for elderly people who do come up there in really bad shape. Anyway, it was a hard time after that she stopped being able to swallow food and couldn’t even drink anymore. They were going to do a feeding tube I’m not just prolong the inevitable. The hardest part was when we took the suggestion of not feeding or giving her water. To me that sounded so cruel I had to trust that the medical people knew what they were doing. I knew that they were the experts at this end of life stuff but when it’s your grandma, it’s hard. I didn’t know someone could go that long without food or water. I felt so horrible for her too. They were so wonderful to us though. They allowed us to come anytime we wanted at all hours. They brought in snacks and sodas and ice anything to make us more comfortable. Finally after being there for three months she passed at like two in the morning. I had just got home. I was only five minutes from the hospital my house. We were up there, talking with my friend who worked there. We kind of felt like maybe she was waiting for us to leave. I just didn’t want her to pass away alone. I had been up there since early that morning. So I thought I would go home and sleep a few hours and come back in the morning. I literally got home and was there for like 10 minutes on the phone rang and it was the nurse and she said we should get up there quick, that it was happening. When I came in the room, she was taking her last breath. I had just missed her. She had been through so much and those 14 years😢 and she never complained or felt sorry for herself. My husband and I would bring her with us to parties and barbecues everyone knew her and treat her so good. There were some friends that were kind of ignorant, and we slowly just kind of stop doing things with those ones. We took her to Reno. She loved going to Reno. Her and my husband would play 2 dollar blackjack and they had so much fun. Anyway I didn’t mean to write so much. Your channel brings back. Lots of memories. Everyone used to say how long are you gonna do this for, your giving up your young lives. I don’t feel that way at all. In fact, it’s one of the things I’m most proud of. Yeah I could’ve worked for some company that made what difference and I know when my grandmother’s life I did. The only thing I would do different is, I would advocate more for myself, in terms of taking breaks and having time away, so I didn’t get burnt out so much. That was partly my fault for not speaking up. I couldn’t have done it without nurses. Wonderful home healthcare nurses helped me get when I need to take care of my grandmother or they help me learn how to do the things I needed to do for her everything from cathing, dressing wounds and learning, how to do the wound VAC, and those dressings with the big sponges, which was a little intimidating at first, but I became an expert at Lol.
I’ve been a nurse for 47 yrs and practiced for 40. Your videos are wonderful and full of practical and useable information. I’ve had to quit watching many of them. My husband has been diagnosed with Alzheimer’s verified by PET scan. I just can’t think of how difficult the end will be right now. We try to live as normal as possible. It’s hard for me to see my husband fail at tasks he could do easily. The worst part is I know ,that he knows, what he can’t do anymore. But I’ll be here until the end, whether it’s me or him. God has blessed us with 45 yrs together. Keep doing your videos !!
Hey Nurse Julie. I have been watching you for a while now, as your field of work and the things you share with us on here is interesting to me as my dream job is to be a funeral director. Anyways, I came to comment on this particular video because my 62 year old father was just diagnosed with Lewy Body dementia. After about 4 years of my family having no clue what he was dealing with. He refused to see any doctors because of his paranoia etc. now he’s in the psych ward, because he’s lost all touch with reality. Having answers helps but also has not helped. Each day that goes by it seems he is worse- there are new symptoms. It’s absolutely crazy to me how quickly this disease is progressing. My siblings and I are in our ambiguous grief state. It’s very hard to be going through. Especially with my dad being so young. Anyways thank you for sharing your knowledge. And I have preordered your book and am so excited to hear it on audible! ❤
I not only wish that I had this video last year. I am comforted by some of your words. We kept thinking we were failing her as she got skin breakdown. I am going to send your video to the hospice company we worked with (and did not have a great experience with) it's one we could have used and they could have as there was clearly not much of an education in the Dementia dept
Thank-you for making these videos! I watched my poor mother-in-law suffer and (eventually) passed away from dementia. I knew dementia was bad…but seeing what she went through - gave me a deeper understanding of how devastating this disease is…
My mother had Lewy Body Dementia… she was combative and hallucinated the last 8 months of her life. … her last few days were horrendous to watch … nothing helped much especially towards the very end … it still haunts me ..
I care for my great grandmother with dementia and I have been caring for her since she fell and broke her hip almost two years ago. Her decline has been a free-fall the past month or so. Hospice has starting coming to her home and they have been nothing short of amazing. I couldn't ask for a better team to help us through this trying time.
We really needed that catheter. My mom was taking 12 or more pills two or three times a day. Most of the time she would hold it in her mouth because she was afraid to swallow the pills. It didn't help that they would give her pills that looked like they may have been for an elephant. That nurse did not mention any alternative delivery systems at all. I guess hospice is more of an art than a science.
Julie I live in Phoenix, Arizona my Mom had Dementia for over 10 years, the care facility Glencroft took such good care of her that in the 10 years before she passed, not one bed sore!! She passed peacefully once us children left with-in two hours. We could not have asked for better care, she was on Hospice for about a month before she passed!!
My 94 yr old Nana has Alzheimers and on Christmas Day we couldn’t get her to wake up. The nurses tried water drops and we did everything but she wanted to sleep. She sleeps more and more lately, which we are used to- but this was extremely hard not just because it was actually Christmas. It’s so hard to know she’s not dead but she won’t wake up. Now, she’s in the hospital because she has influenza A and her state has also progressed further so she probably won’t be going home to her care room with my Grandpa but rather to full time care room, and that’s so hard (they’ve been together since they were 14 and married at 19), so we worry about him too, now. Thank you for posting these and for the help they provide.
My husband had Luey Body dementia and was starting with it when his enlarged heart and needing oxygen constantly with liver going and couldn't walk anymore.He died within 3 months bed bound. in hospital care and lastly hospice.I took care of him for 6 years and it was difficult. December First it will be 5 years since he died.He was a police officer for 33 years and we were married 38 years.I miss him every day.
My mom recently passed. She was calm mostly but sometimes when she woke up she seemed to be stuck in a dream and thought strange things were happening. It was unsettling, and no way to reason with her. I would just listen and fortunately after the next time she dozed off she would forget it. One hard thing at the end was she could hardly swallow anymore. One of your videos helped me so much to know this was to be expected and I didn't have to try to get her to eat. 😢
My great-grandfather had dementia. The last time me and my mother met him before he passed he got scared of us and told my grandmother ”there are ghost standing there!!.” He was so sure that we were ghost so we had to leave the room to calm him down. I was around 8 years old and this memery has stuck with me for 20 years.
Dementia runs on my mother's side of the family. We lost four aunts, last year we lost the fourth. My grandfather's sister, my grandaunt, a third cousin. Dementia is the absolute worst. I hate it beyond reason. What's worse than all that is I have two daughters, and I have them warned to be so careful with this absolute horrible disease. As my mother said when we were giving her condolences on losing her sister, " I lost her the day she was diagnosed " Thank you for reading. Appreciate your time.
Liked and subscribed ❤️👍 Thank you for all your hard work. Both mentally and physically ❤️🙏 You have one of the most demanding jobs that 95% of the population couldn’t do, or let alone do well.
I have been a long term care worker for many years.Dementia is very difficult.You see the kindest people become very difficult to deal with in all aspects of their illness.From not wanting to bathe to throwing things or just plain abusive.However we just have to still be care givers and provide care.Just try your best and also be nice to ourselves.And if you have to seek help get it.Thanks everyone and keep smiling.
Hardest part of end stage once bed bound is body rigidity and loud moaning sounds day and night, be it from pain or dementia itself. Thanks for informing us. We’ve relied on your videos for guidance as we walk this sad and hard walk.
thank you for explaining so many things.I just happened upon your channel, It is very helpful as I have a family member who has dementia, and it helped me to understand the stages of death, as I was with my father when cancer took his life.
My 88 yr old daddy has just been accepted for hospice. He has a 20 yr history of TIA’S and an ischemic stroke in 2020 that was on his left side of the brain. It really escalated his short term memory loss, but now he has lost most of his long term memories as well. I’m his oldest daughter and was his full time caregiver for the last 3 years .( he lived in a trailer in our backyard for 7 yrs altogether.) I did everything as long as my health allowed me to. He has been living in an Alzheimer’s unit at a local nursing home since Aug 18. He’s adjusting quite well. His being on hospice is a big relief to me. Now I can spend what time I have being his daughter not his caregiver. In between being his property manager of his 2 rental properties. 6:34
My mother has dementia. She is just starting to have trouble swallowing her pills and eating certain foods. I moved my parents to my place in Oct 2022. She doesn't always know our names. It is very difficult to watch the changes in her. Thank you for this video.
I wish I would have found your videos when my loved one was still alive. It would have helped me understand more about dementia. I did not discover them until recently
My father died a month ago. 0ctober 11th. He had aggressive dementia. He was 88. He had been diagnosed in September 2022. He ended up getting a chest infection.
Great video, Julie. I’d like to get your opinion. My mother has gone through full functional decline almost 3 years ago and she’s already had pneumonia. Should she be woken up to be fed? What if she falls asleep while she’s being fed. She still eats, but my father and the cna are constantly feeding her. I believe 75% of the time she is reflexively opening her mouth and not asking for food. TIA for your response 😊.
Julie, thank you for this honest and informative video. Dementia runs in my family, and my mother is nearing the end of her journey with it. I would like to ask if you could do a video on VSED. Dementia can inflict such a long and suffering way to go. I would like to know more about the VSED option as it might be something I would choose if I were diagnosed someday. Thank you
Thanks again Julie. Somewhat educated now, I am saddened by what people must go through. There just seems to be easier ways to die, but few of us really get to choose, huh?
My father suffered from dementia aged 96, lost control of his bowels and ended up pulling all of his tubes out and telling the hospital where to go. That was the last thing he said and it took five days for him to die without food or water........
As a retired clinic nurse I couldn't agree more. I always had trouble losing weight, so I have always said if I start dropping weight for no reason, start looking for the tumor. I was not joking either.
my grandma has bad dementia but has been in stage 5/6 for yr's, not sure whats going on, she still recognizes me as her grandson and a few others but, it's just hard (she still can walk and fee herself so she has a ways to go, just her memory for 90% of the way is a no go).... thanks Julie
My mom asked me to take her to the doctor because she was worried about her memory. Doctor told her to get more exercise. He wouldn’t test her. That was 10 years ago. She’s 93 with dementia.
This is so sad. What an awful way to spend your last years. However hospice care can definitely help ease the pain until the suffering is over. Life’s so unfair.
Hi. I have a question. A social worker from hospice came by last week and said to me "Congratulations. Your mother is no longer dying. She is not declining fast enough. We are discharging her in 2 weeks". I about fell to the floor. She kept saying this is a good thing. It is NOT a good thing. I depend on the RN and CNA's for their help. I asked her what she considers decline. She said she would be dead in 5 days. 😳 She said I could appeal but that I shouldn't because Medicare would flag my mom. Any advice? To be left alone with a bed bound Alzheimer's mom is devastating. She can no longer talk, doesn't recognize me as of last week and I have had to puree her foods for the last four months. I am desperate for how to survive this next chapter. Any advice would be appreciated. Thank you.
I know you didn't ask me but can you get any family to help? A good friend? Maybe a TRUSTED nursing agency? I'm just trying to give some suggestions. I wish you both the very best.
Unfortunately- this happens a lot with dementia patients- the hospice company is following Medicare guidelines- we can't keep someone on hospice forever- unless we can prove to Medicare they have declined in the past 2 months. So even though they are debilitated- If they've been the same- we have to take them off hospice. It's unfortunate
@@jamierupert7563 Unfortunately I am all alone. I feel like I am in a prison. I cannot leave her home alone other than a quick run to the grocery store or CVS. Hospice is such a gift. Always having an RN on call 24/7 and a CNA to help bathe and change the sheets is a godsend. In my world she is declining every other month. Thank you for your kind words.
I’m sitting in the floor rn listening to my mom breathe. Even though she’s been diagnosed with FTD my sister doesn’t believe she has dementia. I took care of my mom for 8 years. It’s hard to watch my 100% handicapped sister and her 81 year old husband “take care” of my mom. They can’t take care of themselves and bc they can’t my mom is 100% bed bound. I don’t understand. I have to return to Texas tomorrow. The doctor here asked if I’d be willing to take my mom again. Because I’m in Texas and she’s in Denver there’s no way for her to get to me except air ambulance which the insurance won’t pay for. This is truly awful. Ty for all you do! ❤🙌
My papa just passed away of dementia September 18th 2023 he was agitated it was difficult but I know it wasn't really him when that happened and always said he was going home which me and my mama didn't know before but he meant to heaven I miss him every day he was cremated so I got his ashes in my necklace so he's with me everyday my mama and I and his hospice nurse and my aunt witnessed him pass away it was very emotional and tore us up because he was fighting thank you nurse Julie God bless you
My daddy has FTD and he passed December 2019. He was only on hospice 😢 2 days and gave no signs. His hospice nurse said she knew we were close didn’t think it was that close. 😢
Thank you for these videos. My sister has Lewy Body Dementia and is declining. I know some of what to expect and have seen a lot of death with aging parents and relatives. However, this is my sister, and she is only 67. It will be difficult.
That’s where I am today-2 days in. That usually happens when no one else is around. Im worn out. Lorazepam, Quet, Alprazolam not working during the afternoon for agitation. Im worn out just 2 days in. Family is 7 hours away.
I'm thinking about getting a Macy Catheter just for some out of the norm fun to Surprise my fiance with. Lol Absolutely love you,the channel,the stories and the addiction talk. Love to anyone dealing with or someone with dementia. No disrespect. Peace and Love❤️
My mother 91 years old is being cared for by my youngest brother. I see my mother at least 6 days a week. She is suffering from dementia and unable to take care of herself. I have seen the slow downplay of her life. The problem that I see most of the time is that every once in a while she wants to go home, she already home but she is looking for your mother or father to take care of her. This is like she is acting like a child. My brother has continued to take care of her ensuring that she eats and gets up to visulize the world
My mother was in hospice, which is something I will never do again. My time or my boyfriend times come going to a state that gives you a scrip and let's you go home and take when ready. We are looking into Vermont
Our Papa had dementia at the end of his life… Very difficult to deal with and had to be put in a facility that could care for him. he was a very large man a soldier… A wonderful husband and father… it is so incredibly sad to see your father/husband, etc. no longer know who he is or they get themselves in trouble… At the facility, Papa decided to rewire a TV… Yes he was an electrician by trade. These things are just going to happen. What the brain remembers… It might try and do what it is familiar with… you MUST Pray folks… So many are in this situation.... And it could be anybody... your dad, your mama, a family member you know and love… a friend. Please 🙏🏽Pray people… Pray God hears your prayers and indeed... He IS WAITING to hear them.... for your loved ones...😢🙏🏽🌿🕊️🌹
i hate dementia, it killed my grandmother and my father. Granny had alzeimers and was a long illness and she died at 86, dad was only 70 when he died, he had Lewy body disease and that was nasty, the progression to later stages where he was unable to walk or go to the toilet on his own and need diapers and being fed was fast and the worst bit at the end when he could not swallow.
My mother is 93 and constantly asks me questions throughout the day over and over and over repeating herself. She cannot remember people but does know who I am. She is house bound but can still get around with a walker. How does one know the difference between dementia and just plain old age?
I believe my stepmother caused my father's pneumonia and death by shoveling food/soup into his mouth. I unfortunately did the same thing from watching her.
What advice would you give to those on the outside looking in for someone refusing to call hospice thinking she knows best for her mom? I know no one can force her to make the call but she is overwhelmed and having had hospice for my own mom, dad and sister made a world of difference and I'd like to gently encourage her to make the call. Her mom's age is 98, 99 in March so obviously not much time left. However, she is still eating though has lost 24 lbs in the last three months. She isn't totally bedridden yet.
