Ep. 141: Late-Stage Dementia versus End-of-Life
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- Опубліковано 31 бер 2022
- Believe it or not, end-of-life and late-stage dementia do not always mean the same thing. In fact, about 50% of people who live with a form or type of dementia will actually reach the later-stages. How can we cope during these incredibly difficult times? Join us this week as Teepa discusses a few helpful strategies.
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"I'm dying, not because of hunger and thirst, I'm dying, therefore I'm not eating and drinking. My body is shutting down and cannot process the food and drink." That is a very important thing to remember at the end.
Thanks for your comment, @Kiinell. Glad that it meant something for you.
It makes so much sense . I need to talk to the staff at my dad’s nursing home about comfort care now . 92 end stage and we don’t want him to suffer anymore at all 😢
It is so important, and thank you for emphasizing this quote from the video. my father is approaching this stage, and phrasing things in this way to my mom may help her when she is deciding on whether to intervene.
experiencing the wasting away process in a loved one seems merciless to the caregiver😢.thanks so much for the down to earth explainations ❤!
Hi, @karenmcgarry7798, I'm sorry that you have experienced the wasting away process. You are right, it isn't easy for a carepartner, but we are glad that you have found some explanations here that seem to be helping you. Here are some other videos that might help you (www.youtube.com/@teepasnowvideos/search?query=end%20of%20life) or you can connect with a team member to talk about things. Consult@teepasnow.com for a free 30-minute talk.
Man! I wish I had found this information 5 yrs ago. My father had Alzheimer's and went through this. I blamed the assisted living for doing a bad job and trying to force him on meds to manage agressive behavior. Now my husband has Lewy Body. All these resources help Bunches!
Hi, Lise Naegle, I'm sorry that you lost your father, but I'm glad that you found us now. If you'd like to know more about Lewy Body, please check out this search (teepasnow.com/search/?search=lewy%20body) on our website. You may also be interested in our Friends and Family section for more resources (teepasnow.com/resources/for-families-and-friends/)
Thank you so much Teepa. My mother is in end stage Alzheimer's and she is 95 years old. It is very sad to see her bed bound, incontinent and having hallucinations etc. I am comforted by your Talks and Videos.
Hello, @Orly, you are very welcome and I'm glad that you are comforted by our work. As member of Teepa's team, we would let you know that if you need support at any point of this journey with your mother, please reach out to us 1-877-877-1671 or consult@teepasnow.com
Can not thank you enough for all you share. Recently assisted my wonderful dad in his last few days of life. Not really knowing what to expect i used my pac skills, shared with my sister as it is not a one person job and we were able to give him the only thing he ever ask for, to die at home. In some ways it felt more like a gift and less of a loss, to finally watch him be at peace on his terms. God bless you all for what you share.
Thank you for walking your dad home.
Hey, @Darlene Carman, we're so glad that you were able to be with you dad at the end and to being able to share skills with your sister. When you share our information with others that also helps them.
I’d like to hear something on the lack of professionalism in the Assisted Living-Memory care facilities. Not sure if this is a new thing. Seems like a lot of places are in the business of Dementia care but have no training or ability to care for such people properly or with understanding and compassion. Either that or it’s a lack of staffing or both. They certainly brag about it, but don’t follow through. Maybe I’ve just had bad experiences so far, but the hunt for a good place is like hunting for a diamond in an ocean.
Wow, @newwine1887, it sounds like it's been a difficult time for you. You are right, it shouldn't be that way. Positive Approach to Care (PAC) is working very hard to help facilities gain the knowledge and training that they need. Your hunt has been difficult, maybe we can help. Please check out these organizations (teepasnow.com/pac-designated-organizations/) who are committed to bring PAC techniques and skills to their team. We also have a large certified community of people you may connect with as well (shop.teepasnow.com/pac-certified-community/all-certified-members/) where you can search by zip or postal codes to find people near you.
That was beautiful. Gracias dear Teepa
Extremely helpful information! Thank you!
Best episode!
Thanks 🙏
This was very informative. My husband has recenty been dagnosef with late dtsge demrntia whch is different than end of life which is very uplifting for us. Thank you for explainng tje difference.
Hi, @Diane Secchiaroli, we're glad that you found our explanation helpful. If you'd like to know more, please visit www.teepasnow.com. You may also want to check out this video: shop.teepasnow.com/product/end-of-life-care-and-letting-go-streaming/.
Once you replace negative thoughts with positive ones, you'll start having positive results.
Easier said than done. Especially when I suffer from C-PTSD, depression, chronic pain, Fybromyalgia, ADD, & the care place has just 2 people trying 2 care for 15 residents! Last night instead of helping the residents eat, they were hand washing dishes! I needed to get home to my husband & feed him, but had to feed my dad, & even give mom her Lorazopam as they had a bday party for a new resident & she was shaking from anxiety & Sundowners & if I wouldn't have been there she, they, both would've suffered! I can't be there every suppertime when Sundowners time is at it's worst! I RUN back & forth between both parents when I'm there, other care 4 ONE parent, which is ALL you all talk about (caring for just ONE parent-there's NO help for those of us caring for TWO PARENTS WHO BOTH HAVE DIFFERENT DEMENTIAS!) & workers are too busy 2 care 4 every1! They cannot hire enough help here! I'm 100% disabled, ALONE, & have cared for both parents for 6+ yrs non-stop! I have NO life. It's made ALL my disabilities so much worse! My drs have said yrs ago I shouldn't be doing this, but there was no one else! Telling me to think positively while I watch both parents suffering, & my life has blown up, is not helpful!
@@k.r.1069 I’m so sorry. I know it’s hard! I wish there were more options! 😢 My heart goes out to you! 💔
Spoken by someone who has not been neck deep in this nightmare
@@k.r.1069I’m replying to your year old post. I hope something has gotten better for you. I have been taking care of my mom with dementia for 6 years now. It’s hell. My father died in a small aircraft accident when he was 41. I was 13. For years I cried over that. Now, I thank God he’s not around because I’d likely be taking care of two parents like you. When my mom is experiencing sundowners she yells that my dad died on purpose and hopes he rots in hell. This may sound terrible to some but we should have compassionate euthanasia for this. We have more compassion for animals than humans. Supposed care homes that rake in thousands a month. It’s just a huge money mill for them. I’m keeping you in my thoughts.
My Father just had a major change in his level of functioning. He is not able to walk with a walker. He can not feed his self even with his hands. I’ve noticed that his arms are bent at the elbow . The muscles in his arms are tensed up. This is new for about 2 weeks. I think he is moving into end stage Alzheimer’s.
@kerrissedai6857 - Im so sorry for the difficult time. We are here to help. We have a free 30 minute consult ua-cam.com/video/j7f9a8hs0jY/v-deo.htmlsi=NMsyXO0zCN7mnB_u. Take Care
I useed to work in care sector but had to stop due to health osteoarthritis and back injury, now waiting for result mri head gp and mental health think I may have dementia/ parkinsons , my daughter raised concerns, I feel like had sails knocked out of me. I also have angina etc
Hi, @Susan Moore! It sounds like you are dealing with a lot of issues right now and I'm sorry that's happening to you. If you would like to talk with someone about things, please think reaching out to us for a free 30-minute consult. Here's a link to our website: teepasnow.com/services/consulting/phone-consultations/ or give us a call 1-877-877-1671
I understand as after 6 yrs I too feel barely able to do anything, as I was already disabled when I became the only one caring for 2 elderly parents who BOTH have different dementias! I just want to lay in bed forever! I drink coffee but have had to add caffeine pills just to do anything! Praying for you. I worry the stress may bring on dementia on top of all my other problems, & after watching my parents in their last, awful stages, I don't want to live that long. I just don't. It's my story & my truth, may not be other people's. I've heard many caregivers say the same tho'. They too are scared to death & say they'll die 1st b4 it gets to that stage. I understand that now. But I'll go "positively" for Teepa's sake!🙄
Taking care of mom, LBD. I feel she's between stage 5 and 6. 86 years old, history of dementia in family. Her sister just turn 82 and also has LBD, I feel her sister is in stage 6 heading to 7 faster than mom.
Mom keeps asking me where her daughter is. Lately there's 3 daughters all with the same name. There's me at 17, 38, and me now at 64. None of them come to visit....I am the only daughter.
Late at nite, 3am to 5am, she's trying to leave, friends are in the driveway, or dad, who past away in '07. We direct her back to bed.
She freaks out even if i take out garbage cause she's worried about me, last night got to root of this worry. She has always been OCD, to the point of insanity. So she thinks that I'm going to die if I leave the house and she ultimately worried about what will happen to her if i die. This is sad and most frustrating for me.
She's has had several viruses this winter, has started to choke when eating, still wants to control the narrative. Has heart disease, gallbladder and 6" of colon removed cause they were twisted up together. Both knees replaced, tumors removed from breast, both hands carpal tunnel surgeries, hysterectomy, spinal stenosis, pancreatictis, lactose intolerant, celiac disease, bladder sling, thyroid continues to act up having to adjust meds all the time, uti, there's more but you get the huge medical problems. Was addicted to oxycodone, drs took her off of then put her on the horrible mind numbing gabapentin, she isn't on any pain meds now.
Had a nephew die at 62 from rapid on set dementia, he was diagnosed at 59.
She is hungry all the time,
Hi, @Shelley Soe. Wow it sounds like you are dealing with a lot of issues right now. I'm wondering if you would like to connect with someone from our consulting team to help you work through some ideas of what do to. Please call 1-877-877-1671 or email consult@teepasnow.com for a free 30-minute session.
Teepa, I have Parkinsonism and recently had a scan to rule in or out Lewy body
My scan came out clean with no traces of MCI or other indications. I'm still advancing in dementia symptoms, my latest is mood changes. Can you still have a form of dementia and it not show on a Petscan?
Have you had someone check your meds to be sure that's not causing it? Taking bladder meds did it to me!
Hi, Tory Berch, you ask an interesting question and as @CommunitySupporer suggested it might be something else causing some of your symptoms. You may want to talk more with your doctors or if you want to explore learning more about all of these dementias, check out some of the webinars Teepa did on our website (shop.teepasnow.com/?jsf=woocommerce-archive&tax=product_tag:111) or check out these free videos (teepasnow.com/about-dementia-new/)
Thanks for charing, @CommunitySupporter
@@Seamonkey555 Sorry, just seen your reply. No, I don't take any meds like that. No high blood pressure or cholesterol.
Nothing has changed med wise
@@teepasnowvideos I will be talking to my Neurologist in July
I've asked him the same question on an online forum but never heard back. I know it's a difficult question. I will look at website and thanks for replying 😃
My husband's death certificate said death caused by dementia but he had pneumonia and his heart had stopped several times during 15 hours prior to death.
Hi, @Elaine Goad. I'm sorry to hear that you lost your husband to dementia. Pneumonia and heart issues are a few of the things that may happen when the brain can no longer function as it did before. If you ever want to talk with someone about your experience or just talk, please reach out to us att consult@teepasnow.com or 1-877-877-1671.
ALL COMMENTS/VIDEOS are regarding caring for ONE parent with dementia. I'm the ONLY CAREGIVER (& I AM 100% DISABLED!) who has cared for TWO PARENTS WHO BOTH HAVE DIFFERENT DEMENTIAS for 6+ YEARS! I have NO children, NO siblings, NOTHING, it has just been ME! My parents are in Stage 7 now, but have DIFFERENT symptoms, DIFFERENT health issues, DIFFERENT Sundowners probs, & on & on & on. The 1st 2-3 yrs (again me 100% disabled! And all they have had! Tho' there were others who did NOTHING!), I worked 90+ hours a wk, eating maybe 2 REAL meals/week, driving n2 my driveway & falling asleep immediately til my husband came out to get me, being so exhausted I'd fall asleep in the morning @ the drop of a pin, spilling my coffee all over my lap! There were nights I BARELY made it home-I was SO exhausted! AGAIN, I'M 100% DISABLED! There was a 6 month period I almost, or did, get n2 car wrecks from sheer exhaustion! No one in my husband's LARGE family undestood, nor TRIED to understand(!), nor helped in ANY way! Tho' I (we) have helped ALL of them in EVERY WAY, 10 adult grandkids, 3 50+ "adult children", & great-grandkids. Gave cars, pd 4 private schools, bought furniture for, sent $ to each month while they bought new cars & we (living without ANY, debt, driving used but nice cars pd w/cash, paying our mortgage off early, & ALWAYS, EVERY MONTH GIVING TO TRULY NEEDY PEOPLE!). We did without wants, buying ONLY needs, while all drove new, fanc.y cars, or had Nike shoe collections, yet they all had zero savings, til we finally woke up & said "NO MORE!"). But NO ONE EVER SPEAKS ABOUT A SOLE CHILD, USUALLY A DAUGHTER, CARING FOR TWO ELDERLY PARENTS WHO BOTH HAVE DIFFERENT DEMENTIAS! I've listened to & read all books, looked online, & found NOTHING! NO HELP FOR US CAREGIVERS OF 2!! I am in the last stage, Stage 7 w/my parents, BOTH parents-who both have VERY different problems, symptoms, issues, Sundowners, & on & on! I am 100% disabled & have lost ALL my health, joy, ability to do ANYTHING that brought me joy, since this hit me (like planting flowers, playing the piano, helping with our personal business, cleaning our home & we haven't had a vacation in 12 yrs - as b4 my parents we cared for another elderly family member who was a piece if cake & peacefully died @ home taking a nap, she had ALL her cognition til the end! But I have been utterly ALONE caring for my parents! Both w/different dementias! Today was HORRIFIC! But there is ZERO HELP FOR THOSE OF US DOING THIS! IT WAS 1 OF 10, NOW PROBABLY MORE! YET NO1 OFFERS HELP TO US?! I'm close to suicide as this is BEYOND the WORST of caring for just one! YET NO BOOKS, NO VIDEOS, NO HELP! Why! WHY!? I have chronic pain, Fybromyalgia, C-PTSD, Severe DEPRESSION, ADD, & MORE! Yet STILL, ALWAYS, ALONE, I've done EVERYTHING FOR MY PARENTS! And let my health go! I feel like I've been living in HELL for 6 years STRAIGHT & no one helps or cares! I know the stress causes my chance of dementia to go up (multiply THAT by 2!!), & I swear that I WILL NOT go down the road I've watched BOTH OF MY PARENTS go down!! Why, why, does no1 help those of use caring for 2 w/dementia? Do you not care, or see the DEVASTATION it does to ENTIRE FAMILIES, but ESP
NEEDED!🥺😥 Help plz!
KR, please know you are not alone in this! We hate to hear the pain you are in and how isolating this can be. Please reach out to us consults@teepasnow.com and we will absolutely schedule a free 30 min call. Also, if things are feeling really dark, try the new 911 alternative, 988 for support! I am so sorry this is so hard, please know we are with you on this if we can help, even maybe just by listening.
Hi, @K.R. We got your reply. I just need to say if you are feeling suicidal at this point, PLEASE find someone to talk to - call the crisis hotline 988. Someone will listen and try to help, I know.
"...Suck, swallow, breath..." valuable info BUT, very annoying little "test" pausing for us to answer.
Annoying ‘Test’ for us .. Imagine what it’s like for the person experiencing it 🥴
I think it helps emphasise the point & Teepa is very inclusive helping us see if we can make the links. Caregivers need to try to keep our minds looking for links because we're responsible for that other precious person who has to entrust their well-being & memories to us. We're keen to get the info but I like this style of teaching. I often smile to myself as I try to work out what's for the best that Teepa will have said 'turns out...' because it's obvious to her but she's forgiving that it wasn't obvious to me, I don't what if do without her guidance
pausing serves EVERYTHING in our life, it is often where peace and answers hang out, you can do it!
@@joy2dworld595 I agree! It also helps us remember it better than just hearing it.
Hello, @D Parker, we're sorry you found the pausing a little annoying, but I'd like to thank you for starting the conversation. If you'd like to explore more of what we do, please check out our webiste (www.teepasnow.com) or give us a call at 1-877-877-1671.
This is stupid. I've come accept that if this happens or begins to happen, then I'll "tip on outta here." These people are suffering and with no quality of life. Why hang on to that?
Hello, @Saeed, I'm sorry if you found this talk to be stupid. We never intented that. If you would like to discuss your feelings about this we would appreciate your time. Please contact us at info@teepasnow.com or 1-877-877-1671.
Well, this podcast is not stupid. But agreed that who would wanna live with this. The problem is if this happens to you it’ll be beyond your capacity to tip out
Too much giggling. I'm needing clear information. And nothing about this disease is funny.@@teepasnowvideos