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I plan on caring for mom until the end. Or so I thought until watching these videos. Does anyone think it’s possible? Can anyone who’s done it write and let me know how tough it was and if they would do it again? Mom’s at stage 4 and hold but I appreciate these videos and knowing what’s coming next. Also, I have no one to help me AT ALL. I planned to move into an independent living community in connection with assisted and full nursing care. Am I doing the right thing? HELP!

Never say.. "she/he looks really good" or "how does (the person with dementia) feel about ( whatever decision)?" They look good because the carer has put in a lot of effort to keep them healthy and clean and as happy as possible and after a certain stage the carer has to make decisions for the person because they can't do it themselves (often the best decisions are hard to make and are about safety and health and not about feelings). Better to say, "it looks like you've got a lot on your plate, what can I do to support/help you?" or "I'd like to give you a break, can I watch your person for a few hours for you?" and then follow through. Or, if you can't help, you could just say "you're doing such a good job, it can't be easy".

❤❤❤❤❤❤

My dad has vascular dementia. He is 93 years old. I wonder what stage he is in. He is delusional. Has auditory and visual hallucinations. Always reaching for something that is not there. He appears to be always trying to put something together, which I am sure stems from his past occupation. He sundowns and has his days and nights mixed up. Will go 2-3 days with barely any sleep and then due to exhaustion will finally sleep some. Lack of good sleep makes his delirium worse. He fell a few weeks ago. X-rays and MRIs negative. Had to move him to a facility because he is now unable to walk. He previously took baby steps and was grabbing onto walls and furniture to keep from falling. He always managed with my help, then suddenly took a nose dive downwards. He thinks my mom is still alive and she died 2 years ago. A couple of times he called me by her name but he still knows who I am when I visit him. Most days he has tremendous trouble with language and things just come out mumbo jumbo jibberish-like talk. It makes it so hard to have a conversation with him because you just don't know what he is saying and he tries so hard to talk. Every once in a while I can catch a word or two and I try to respond with something and I most definitely can get a look of confusion as the answer I gave him was obviously not the right one. It's like putting a puzzle together. He still has a good appetite and eats well. He loves hamburgers and sweets. I bought him a hamburger today and noticed he had trouble opening the bag but he eventually got it open. Ate the burger on his own. He is not interested in tv or really anything but just sitting in his wheelchair (hallucinatory and trying to fix something). Knows his name and date of birth but not very oriented to place and time. He is always glad when a staff member comes to see him but occasionally at night he gets agitated and can become somewhat aggressive. When I visit him (almost daily) he thinks he can go home with me and he forgets his legs don't work anymore. I just keep telling him he's there for physical therapy to see if we can get his legs stronger so he can walk. I went through this dementia disease with my mom and now my dad. It's the most horrible and the most dreaded disease. Horrible to watch. I pray the good Lord takes him sooner than later. He took care of my mom when she went through this and I know he has to be exhausted. I know I am. Love and blessings to anyone fighting the battle.

DLORW does not spell World backwards??? 4:15??

I completely understand your heartbreak about missing your MOM in the 15 second glimpse of how she used to be. That is one of the most painful things to witness and feel during that awful stage of your life were everything seems to be moving at the speed of the "hamster´s wheel" were you can´t even stop to think and feel what is going on.

My husband is really cheap with his money so I got to lie to him

People should have a check on once a month

My husbands as Alzheimer’s and sometimes doesn’t have patience

Do is call bossy 😊

Very good advice. We have the MedReady medication dispenser and have had it for over a year, the one we have has cell service so I am notified by text and call if she doesn't take her dose which has been awesome. Also the MedReady customer service team is AWESOME! This device is expensive and now that I know what a godsend it is, I'd pay triple the price for it. We also have the picture phone which has also been wonderful for her "sanity" because her cordless phones were telling her she had a message when there really weren't any messages. We recently got the flipper tv remote which has also been a wonderful thing since she's in a new facility and the tv was completely confusing for all of us. I agree, do these things before it's necessary because it's so hard for them to learn new things later on. Instead of thinking of it as taking things away, or them losing their independence, think of it as giving them longer access to the things they need to feel safe and comfortable and to give yourself a break from dealing with a few of the worries.

So well said. I love your videos. This winter is going to be tough.

She was cute. My mom’s go to was always 38 years old….. she just passed at 92 this June after 6 long years. She’s finally free ❤

Absolutely! I would cry sometimes because my Mom didn't noticeanyway because she was asleep. She hears me this time and woke up and looked over to me, " Lisa, Dolly, are you ok?" I stopped crying and started smiling. She paused for a moment and fell back to sleep. Well then I cried for a different reason... Since that happened about 2 months ago she has slowly gotten more and more quiet, sleeping all the time except when I wake her up to eat, take medicine and go to the bathroom. While she eats I take to her so she will stay awake while she eats. But the past month she has been slowing down on eating. Tomorrow she has an appointment to talk about hospice or at least to reevaluate her Alzheimers dementia status. I think her stomach needs to be checked out again to see if she has any bleeding. At least with a blood test we can figure it out and go from there. God bless you Deborah. Thank you for sharing your life with us. (((Huge healing hugs)))

I absolutely soak up every one of your videos. Sure I listen to the other youtubers like hospice nurses, but to have your perspective is invaluable! You have had three people in your family as far as I know with dementia. All having different extremes. My Mom has alzheimers dementia she was diagnosed with in Fall of 2023. Goodness. She is now in stage 7. She doesn't want to at much, will take her medicine in yogurt and now she can't walk around at all ND sleeps until I wake her up about 4 times a day. She doesn't talk much any more but would tell tales similar to your Mom, God bless her soul. Behind your matter of fact attitude, I can see just how much this has effected you. Your showing of strength and understanding has helped me be strong as I am the only care giver for my Mom. I work from home. My Mom and I are both widows. It isn't hard taking care of her. She has the sweetest personality...yet. I believe the end is near and I pray it will be peaceful. ❤

Re: Decline - I have found with my husband that he will have a sharp decline followed by a plateau period. And then another sharp decline. It's like an all or nothing thing. No in-between gradual decline.

This lady is very smart .

Thank you

That was my experience. It would have saved as so many arguments and heartache if we had known what was happening with my mom and all her negativity, accusations and what seemed like gaslighting. It may have saved my brother's life. So sad. The elder years plus dementia should definitely be included in health education in school.

I need to know what brings This disease on, my husband is 82 just diagnosed with Vascular dementia and Alzheimers. Why has this become epidemic?? Thank you for your advice ❤

I am changing my Mom's diaper and cleaning her with rubber gloves to my elbows. You have to be prepared. It is everywhere. She thinks she sweats. There is a change for the house. Designated areas for them to be in the apartment or house. My Mom can't get up by herself so that helps. I get her up 4 times a day to go potty and two more times to sit during the day with me while I work from home. She has been diagnosed with Alzheimers dementia a year and three months ago and she is now in stage 7, the final stage. Right now I can handle everything. She still has such a pleasant personality like always. God willing we can stay together until the end of her life.

Such excellent practical advice. We went though 8 years of this phase with my husband. And to "broken" I will add "I'VE BEEN HACKED." The non-stop 'hacking' was unbearable as he lost command of the computer, phone and any other device. Definitely get a spam blocker box if you still have a landline. It made a HUGE difference in so much agitation and frantic running to the phone - even if my hand were full of meatloaf mixing - so he wouldn't do it, then rush and fall. The day I installed that, a little curtain of peace descended.

I caught up with a friend for coffee who advised me that I “just need to cherish the good moments”. He had no fucking idea. Will not meet that friend for coffee again

Thank you

I agree with you! This is so true

FILL... long E..... AL or FILL...long E....UL. i'm dealing with the "she's doing great" from medical providers!!!!! because she can talk about things that never happened and are not true but they have no clue. it's such a disservice. i keep saying no she's not doing great but don't get anywhere.

i wish you'd do a video on the shear terror dealing with this causes. do you not fear that YOU and your husband will most likely also have dementia? It's all i can think about. I'm 66 and my mother is 90. She could live another 2 years i'm guessing. i am so depressed and anxious all the time and dread waking up in the morning. i hate visiting her and hate feeling guilty when i cannot force myself to do it. i hate that i am making decisions for her life. it's a huge weight on my shoulders. i try so hard to get her good care and make sure she doesn't suffer but she hates where i put her. now i'm trying to figure out whether or not she could withstand the 3 hour travel to move her down where i live. she completely went crazy in a 20 min ride from the hospital to rehab.

my mom is very focused on her clothing still. she does say the staff takes her clothes as in steals them. she's still in rehab after a bad fall. i have brought her a lot of clothes but she is quick to reject them by even the next day. the day before she loved everything. then the next day that one is too small that one is too big. she's not walking so unless something is tight it doesn't really matter but she refuses to put them on. she has a closet packed with clothes but when i visit she is mostly wearing a hospital gown!!!!

My Mother died at 92 from dementia. It was so painful to watch her daily life. I can relate to all your caregiving struggles. She is at peace now. Do I miss her? Yes, I miss the Mom she WAS 😥

I am the primary caregiver for my nearly 84 year old (born 01/11/1941) grandma. She was diagnosed in April of 2021. I lost my job in July and so now I am at home all the time while I look for a new one.. and it's a constant battle to remember to make her a drink, eat, take a shower every week, as my mom only says she needs one a week.. in addition I have to make sure she takes meds morning and night. And then two to three times a year my boyfriend and I want to go away on vacation, but my mom and Uncle don't want me to because they say she can't be left alone anymore at night, but that was because until recently she also drank like crazy. Which ended, when she spent four nights in the hospital recently from drinking three bottles of wine in a 24-hour period while I was on vacation for Labor Day. I just don't know what to do anymore. I hate being the primary caregiver. However, my mom who lives down the road about 10 minutes, can't really be bothered with spending a few nights on the couch here to let me go on vacation at the end of the year.

This is a story of the earliest vascular dementia sign I noticed in a loved one and why the person with dementia needs daily supervision: When I was little, my nanny had a stroke followed by many undiagnosed TIA. I remember one afternoon, about 5 years after her stroke, she repeated “it’s getting bad” with her head in her hands. She had just put a penny that was on the bathroom counter into her mouth. I didn’t think anything of it as a 9 year old but she explained to my mom that she misperceived the penny to be a pill. She sat on the couch, cried and repeated “it’s getting bad” many afternoons over the next few years. That phrase made me gasp decades later when you said it with context. In the moment, I thought that my nanny was talking about nausea or pain but it was that she couldn’t trust her own eyes… she knew something was wrong in that moment. At that point, she was still driving and caring for me but she was decreasing in mobility, organization, decision-making (especially fast decisions!) and long-term planning. I miss her and wish that she could have gotten more care. Her doctors didn’t know that she had dementia, they thought that any lapses were from the previous stroke, not an ongoing decline. She was still doing her own med management 8 years after mistaking a penny for a pill. She stopped taking her heart medication without telling anyone. She passed away unexpectedly so an autopsy was ordered: CHF and multi-infarct vascular dementia. She had hidden her decline and remained fluent in conversation so none of her friends suspected dementia. Only her adult son and housekeeper knew how difficult personal care tasks had become for the poor woman but didn’t know to report it to her doctor. I’d encourage anyone thinking about getting care for their loved one to try it out. People with dementia naturally withdraw and sometimes effectively mask their deficits. They’ll say that they’re fine even when they’re visibly struggling and the ADLs aren’t getting done. Keep asking questions even when it annoys them. Thanks for coming to my combination TED talk and therapy session 💜

How long after you mom passed did you finally relax. Or how long did it take

Amen Sista!

May I ask were your family vaccinated against covid? Thanks

Thank you so much for these videos. My mum has Alzheimer's and id say she is in stage 5 so thank you for explaining your experiences.

My grandma who I think is in stage 4, doesn't want to do ANYTHING anymore. She's on antidepressants and anxiety meds already 😊

I've been caring for my 83 year old grandmother who has Alzheimer's for the past nearly 13 years. But she's only had Alzheimer's for almost 3 years as she was diagnosed in April of 2021. She STILL thinks that she is fine and doesn't have dementia. Thinks we all are crazy. It's heartbreaking as her mom (who passed away in 2005 at the age of 87 also of Alzheimer's) had the disease. So I know what's coming and it's killing me already.

Good information. Thanks.

Did all those. Wondered what for. 26 score pass on intelligence. Worse managing life 2 yrs later but think I could still do test coz of number of times the same test. Hah!

Speaking truth. I'm caring for my dad and I can relate to everything you said!

I cared for 2 family members with dementia knowing my son, at the time, was schizophrenic barely hanging on by a thread with his job at Apple. Then the sh*t hit the fan, he flipped out, and I believe I have dementia now at 55 yrs old. My brain has left, it's difficult to remember things. I am exercising now but we need to move, snow is here 8 months a year. Exercise seems to help the most. I am Caregiving again, it's good $ so when the lady dies, hopefully, we will be move and I can save myself. I know I can stimulate my brain, I worked at Safeway pushing carts to get my brain stimulated, it worked but cannot afford to drive 2 hrs for a 6 hr shift. Unfortunately, I had to quit to make the Mortgage payment. This job is easier but my brain is going back to being nothing again and if it's dementia, which I am pretty confident I have, I need to continue exercising. Honestly, I KNOW you can exercise pretty hardcore and keep it warded off. I used to ride with the bike shop. People don't want to know that but I know that adrenaline feeling keeps the brain sharp, if even for one day. The only rip is crashing as you age, you don't get better that fast. I ride at night now, less cars, less danger to crash. Once we lost my only son to schizophrenia, it did something bad to my brain. He's alive but not the highly educated, social, loving guy he was. He did great warding it off for over a decade thru hardcore exercise wanting to beat the disease but broke his leg and within 3 weeks, I showed up to his house to see a monster who had pulled his own hair out. We knew we lost him. My Brother in Law has the disease so it's inherited, we know the trajectory. Anyhow sorry this is so sad, thank you so much for your videos

This is what we're going through right now but not as extreme. She's changing clothes about 1x a week. I am her Caregiver. Blessings to you dear daughter

Yes Deborah! Been watching you since the beginning. My Mom is 76 with stage 6-7 stage Alzheimers dementia. I work customer service from home since March 2020. My Mom was diagnosed 18 months ago. For the last 6 months she has total incontinence aka pee and poop. I take her to the bathroom 3 times a day and more if need be. She sleeps unless she is eating, taking medicine or going to the bathroom. I have my sweet daughter who is grown, married to a wonderful man and they have 3 daughters. They don't have time to help out but they stop by. My Mom and I are both widows and I enjoy her company when she is wake. Sometimes I am hey lady, or her Lisa, or nurse. To come down to it, my job at Nationwide Insurance is about to come to an end next May for about 600 of us. I hope to get a job working from home, but if I can't, Mom will have to go into a facility. There is one that is in a small town and an apartment complex right next door. I feel this would be he best place for me. On Sept 30th I made an appt to ee her regular doctor to try to determine what stage she truly is in. Also, if they predict she is going to pass within 6 months, I want to keep her home, but yes I feel a facility is in order.

Concerning violence. At the Memory Care facility my sister is in, if a resident gets violent or uncooperative, a few days spent in a behavioral center allows for medications to stabilize the resident’s mood. They can come back afterwards.

The TV! Wow, there’s so much I could say. My sister would have it going 24/7 and usually on the weather news channels. All bad weather or crime nationwide was nearby in her mind. After going to Memory Care, she has way more socialization and activities that help keep her calmer.

My husband is stage 6 and still knows who we are. He has forgotten who I am twice though knew he was married to me but those incidents lasted only a few minutes. I know it is coming and also know I am not ready. I don’t think it is possible to be ready

Therapeutic lieing ....OMG YESSSS!!!! I needed this today . Thank You!

My mother is 60 years old she was diagnosed with FTD Dementia 5 years ago. Very cruel disease

Deb, your mom and my great grandma both passed away at age 87. Grammy Giggey slept for 7 straight days before she passed. None of our family was there, but the aides and nurses on the memory Care ward were there.

My great grandma died from Alzheimer's on April 12, 2005 aged 87. Now in 2024, my Grammy(her daughter who is almost 84..will be on 01/11/2025) she is in stage 4..I hate this disease.. especially the end stages, it's heartbreaking.