Three Absolute No's in Dementia Care

[@richardzettervall1543]

Thank you Dr. Sullivan. I really like this video, your three No No’s were very helpful. I’m the sole caregiver for my 71 year old wife who’s been diagnosed with early onset Alzheimer’s disease in 2019. I would say that she’s still in the mild state of progression, but have not been told that by her Neurologist yet. I have dome a lot of reading about strategies for difficult situations and communication. I’ve learned to not argue and definitely not say, I told you that 5 minutes ago, even though I slipped a few times. I know the one thing that works the best of anything is expressing to her how much I love her. Especially, when she says, you shouldn’t have to help me so much. I say to her that I’m happy to be here to help out and that I’ll be with her every step of the way. This is followed with a kiss to send her a solid message and truth of my words. This always helps with her in every situation, so far anyhow. I expect at some point that this may not work anymore. I’m hoping that wont happen, but I’m a realist and will be prepared with some new tactic or two. I loved the way to describe us as Care Partner(s). She is very much involved in her own care and I can tell that she clearly resents me being call her Care Giver. I’m going to make it better calling us Care Partners. Thanks a bunch, Rick Z. & Linda W. I’m watching on KZbin from Creswell, OR.

[@redstamp4185]

I am in TX. I took my mother for a heart appointment and was appalled at how my mother responded to the docs questions. She had no memory of her previos procedure and had not shown up for her test results visit. The doc asked if she had dementia. She was attimate that she did not. I called her family doc and made an appointment. They gave her a "memory" pill which she was happy to take. They did not tell her the upsetting news of having dementia. I agreed it would be too upsetting till I heard your show. Thank you. This is all new to me.

[@annmcfarland3882]

I wish I had known all of this when I was caring for my parents. This video is wonderfully informative. I will "earmark" it to refer back to, and share it with my own children.

[@marcellegrayvanschaik8230]

Good evening Dr. Thank you for this wonderful information. My dad passed away three years ago this past Friday from Alzheimer's. Us as a family may not have really known what we were doing but we luckily did none of you don't instructions to him. Alzheimer's is a horrible way to loose someone it's such a very long goodbye, and seeing someone you love slowly slipping away is heartbreaking. The last week of my dad's life he had terrible shingles. It was awful to watch him lie in bed knowing the pain he was in . Once again thank you for your video. Kind regards from Pretoria South Africa. XxxxX

[@icareforyourbrainwithdr.su7103]

The very long goodbye is indeed so painful. Sending you peace and comfort!

[@janeemily2509]

Thank you from Buckinghamshire U.K. for this video. My 90 year old mother has just been diagnosed with Alzheimer’s. However, she is in denial and says she doesn’t want anyone talking to her about her memory problems because there’s nothing wrong with her memory. We are awaiting her first prescription of medication from the psychiatrist. I started taking notes on my phone about a year ago because I was concerned she wasn’t taking her thyroid medication as prescribed. After a few months I suggested sorting it into an organiser. She refused, but I ignored her this time and I was so pleased I did. When I got hold of all her meds it was just a mess; some hadn’t been opened at all. Because her Levothyroxine dose was wrong, her blood tests were erroneous and consequently the new dose was incorrect. I deal with it all now. She is at home 5 minutes drive away and copes well with personal needs and housework. I have Hypermobile EDS & Congenital Spinal Stenosis, so I’m in a wheelchair much of the time. My sister and her husband are moving 500 miles away next year and I’m worried about coping. She already calls me 12 times a day and I try to drive up to see her most days. At the moment I would find it really helpful knowing how to deal with someone in denial who can be rather cantankerous to say the least.

[@redstamp4185]

Your situation sounds a lot like mine. I'm not close to Mom, 35 minutes away by highway. The other 8 siblings take no interest in Mom. I am so alone. I haven't yet taken her keys to the car because she is so far from town. It is very hard.

[@redstamp4185]

PS. I have scoliosis and spinal stinosis and spinal fusions so can't walk very far or do grocery shopping.

[@janeemily2509]

@Redstamp We are hoping the DVLA who are notified automatically by the psychiatrist about her condition will ask for her driving licence. Failing that, my sister and I have volunteered my brother-in-law to tell her she has to stop driving, although he doesn’t know that yet. 😂 Ma doesn’t shout at him as she does with us. We live in a small town, but with a good bus service, just a 15 minute ride to the main city with large shopping centre. I do her heavy grocery shopping with mine when I order online. I feel for you, it’s so tough. Like me, you probably stumble from one day to the next, dealing with one drama at a time. Everything seems to be magnified into a huge drama and when I try to help she’ll shout and hang up on me. Now I tell her I will help her, but if she starts revving up and shouting, I will tell her I’m ending the call and to call me back when she can stay calm.

[@marirose19]

@Jane Bryant I strongly recommend you find the BEST nursing home in your area. Get her on the wait list & tell them after your sister moves, there’ll be no one to care for your mom. Oftentimes when they hear that, they put the person in need of care on an emergency list. My friend’s care partner said he had to resign by 8/1/22. They called back w/a room for my dear friend by mid June 2022. Good luck!

[@mommashawna707]

My mom is at the beginning stage of dementia and I’m an only child. My dad passed away 12 years ago and she also has lung cancer now. I am struggling bad, she is sooo mean, we have always been so close but now we have gotten to the point she won’t talk to me for 3 months over an argument that I don’t even take part in. I don’t know what to do and would love a video with advice for those of us at the beginning phase of this disease. I am a new sub and have found your videos so helpful and I thank you for doing them.

[@icareforyourbrainwithdr.su7103]

The changes in personality can be the most heartbreaking. I am sorry.

[@carols1030]

Oh my gosh. You are on a difficult road. Also an only whose Dad had what I call difficult dementia. He was perpetually angry with me after being close always. Like a lightning rod for everything that was wrong and not working. The only way I could get through this with any degree of emotional intactness was to realize that after the stroke my Dad was gone, and instead I had this grumpy old guy named Barry to see through the final phase of his life. Sort of worked but the rejection still cut me to the bone. He passed 10 yr ago and it is only the last year I can even talk about this without crying. Above all...dont argue with your mom, change the subject instead.

[@marcellegrayvanschaik8230]

I'm so sorry that you are going through this on your own. The beginning stage is really very difficult. Two things I did learn was always agree never argue with your mom no matter how incorrect her story is. And listen even when she has told you the same story over and over again. I once told my dad . Dad you have told me this already, and he replied , then let me tell you one more time. I think the mean stage is also the stage when the person knows something is not quite right with them but then on the other hand they can seem quite fine. It's very confusing and scary for them. I could see the confusion in my dad's eyes. Maybe you can find a group for loved ones of dementia patients in your area . You are in my thoughts and prayers. XxxxX

[@mommashawna707]

@@carols1030 thank you for your kind words. At the beginning I was shocked when she would respond to my humor as I was putting her down. I mean she’s my mother we have been close my entire life and that’s who I am, it’s my personality. We always joked around and that’s how we got through things a lot of times. So it was a different dynamic at the beginning and then I grew to just change the subject constantly yet she would hold onto those things and because of the dementia she would hold onto incorrect things that were said or things that were never even said and use them to start fights. My dad like I said passed away 12 years ago from lung cancer which she now has had for three years last month which as anyone that knows lung cancer is a very long time but because of Opdivo it’s been a Godsend and all of the new advancements in lung cancer treatment has extended her life dramatically. But she would start hitting below the belt even when I wasn’t engaging and saying things like your dad never loved you, things that hurt and were so untrue that I would get mad. Now we move into the last year and I just change the subject and say nothing but she will go on with an argument on her own and then hang up on me and then we don’t talk for three months, well that puts a tremendous weight on my two children one of which was living with her at the time to help her. She knows the close relationship I had with my grandmother, her mother and she thinks she automatically should have that with my kids but the way she acts no one wants to be around her, everyone is out to get her she wants to argue with everyone and her hearing because of dropping a plate on the ground she has only a very small percentage of hearing in one ear which was the turn this last year that just brought her down. I feel for her I couldn’t imagine not being able to remember things and dealing with cancer and now my hearing would be gone I couldn’t imagine. We jumped on that I bought her expensive headphones a new cell phone a new TV so she could use the headphones the works and my son got it all working for her. But when she’s in a family gathering it’s still hard to engage when you can’t hear. I have tried to get her to go through some sort of therapy or something and they did put her on Zoloft but she cut the amount in half and has been taking that which I don’t think is doing anything because it’s such a small amount and she won’t go back and she refuses to go to a therapist of any sort. I just want to know how long does this nastiness last? I know my aunt and uncle who passed the last year went through dementia but they were 2000 miles away from me so I didn’t see the entirety of it and I am just wondering what I have to look forward to next and I also don’t know what to do when she hangs up on me and refuses to have anything to do with me for doing absolutely nothing because like I said at this point I do not engage and I try my best to change the subject but she will get hooked on something true or untrue and just won’t stop. She has no friends and long story but when my dad passed away within 18 months we had six family members pass away for different reasons and it was hard, my mom and I went through probably about a 10 year depression afterwards, we lost everyone we were close to. My life is on hold during all of this and I don’t have brothers and sisters to ask for help, it’s just me and one can only take hate so much you know and then I feel guilty for feeling relief when we are not talking those three months. It’s an endless cycle and I’m lost.

[@mommashawna707]

@@marcellegrayvanschaik8230 thank you so much every prayer means the world to me. If you read the comment I responded to from Carol it’s a lot of what you said so I don’t want to repeat myself and bore anyone you know. I just thank you for being kind. Your words hold very true.

[@sarahb2623]

Hello and thank you for your videos. I'm in Tx, and am caregiver for a 94 year old. Blind, deaf, and partially paralyzed from a severe stroke 2 years ago, the patient is mostly bedridden, is incontinent, and I am his caregiver 24 7 365. He has been stable since his stroke, but has recently begun having spells of hallucinations, seeing and talking to people who aren't there, or seeing smoke, water or fires. He has never done this before; these episodes last about 20 minutes to an hour, then he is fine, lucid and fully cognizant again. I dont know whether these are ischemic strokes, or lewy body dementia, or what the cause is. He is a VA patient and we can't get a referral to a neuropsychologist in the VA system so I am working on a private MD referral. I can't tell you how difficult this is but I can tell you that your videos have helped me tremendously and have greatly improved my caregiving abilities. Specifically, in a video I recently watched about handling stress, you encouraged caregivers to view situations with the patient as challenges when ongoing high stress levels make the situations seem overwhelming and hopeless. I have found great strength and comfort in reminding myself that this is a new challenge, not a hopeless, defeatist circumstance. You have no idea how supportive and comforting and informative your videos are to those of us who are homebound with our loved one's care. God Bless you, and thank you.

[@icareforyourbrainwithdr.su7103]

Sarah, your message made my day

[@staciebeke7531]

I appreciate your talk. My mother-in-law was diagnosed with Alzheimer's about a year ago and we were given no direction at all. Just told that there is really no medication or anything that can be done. I didn't even know there was such a thing as a neuropsychologist that we could get some help from. That alone is helpful. Thank you

[@asilnosnhoj]

You're a breath of fresh air. Thank you for taking the time to put these videos out there for all of us. I'm so very appreciative!

[@reginamerrick2505]

Totally agree! Be open and honest with the patient!!

[@beckygarth6267]

Thank you for your advice which is so important. Basically I hear being respectful which is basically all we want at any age!

[@shinyshinyman3777]

Thank you Dr.. Wish we had heard your video in the earlier stage of my Dad’s Alzheimer/Dementia problem. His doctor did exactly what you said,”he is old and that comes with age!” Then the doctor refused to even prescribe anything for him! That is so very wrong!

[@icareforyourbrainwithdr.su7103]

It really is! By talking about it, you will help!

[@ssbirdee]

My mom's doctor did the same!

[@ClaudetteAlm]

A personal diagnosis means I really appreciate your lecture on the three no"s in Dementia care.

[@joannaburns7617]

Thank you. Your video was informative and helpful. Just started on this journey with my husband and find the support welcoming. From the Tampa Bay Area of Fl

[@izitmoi3036]

Oh so true. In a hospital recently I was shocked how elderly were spoken to like they were babies. And the the patient has no power to say "please don't speak down to me like this" , because then they'd become a 'unpopular' patient. You're so right in this problem with health care workers way of speaking deamingly to such people. Makes me so sad.

[@kevinl4966]

Wow! This video is packed with such great information. Every "Care partner" can really change things around if they infuse these strategies into everyday life. Thank you for your insight.

[@icareforyourbrainwithdr.su7103]

Glad it was helpful! Thanks for being here

[@aimeemariefournier1013]

Yes !! thanks for being a care partner. Caregivers are amazing people

[@janetfuchs7565]

Thank you for this wonderful presentation, and so many of your other videos. I am a care partner for my wife who has gotten a neurospych eval that showed both short term memory and executive function impairment. I see the memory, language, and daily living deficits clearly, but she did not accept the diagnosis and is unaware of her brain changes. I think it's best to try to protect her from the unbearable pain and rage she feels when anyone suggests that she has cognitive decline. ( She cared for 4 parents with dementias) I know the medical thinking is split on whether to support the person's own experience vs. trying to keep the person aware of reality. You are saying that detailed diagnosis and treatment are important, but that process would shatter her perception of herself and if I supported the medical findings, I believe she would stop trusting me and feel betrayed. I want to respect her wishes and support her dignity, but I'm not sure how this alternate reality can keep functioning before something dangerous or traumatic will happen. I'm all alone in this--no family or friends to help, and I can't imagine how to get in-home care help under these circumstances. Your suggestions are so helpful, but don't seem to address this dilemma of her lack of awareness of her own condition, and inability to cope with a diagnosis. Open discussion of the situation is just not possible. Any suggestions?

[@sharondilloncavalierland954]

I love your channel. I find it helpful. I recently been diagnosed with white matter disease. I was told that most people at my age have it so I am being monitored to see how quickly it progresses. I know a lot of people with dementia right now and your advice is valuable to me to know how to talk to them. Thank you! Hugs from Washingron State

[@icareforyourbrainwithdr.su7103]

Hi Sharon! Thanks for being here

[@freshbeanne]

You are awesome for sharing all this stuff and for free. My father is declining in Parkinson's and we get very little info from his neurologist, although he is a kind doctor. I went to University of Iowa and interned in a Pediatric Neuropsychology Clinic and so this is tickling all my nerdy research enjoyment neurons 🤣😍❤🙏😘

[@icareforyourbrainwithdr.su7103]

Hey Jay, there are over 100 free videos here, including some on Parkinson's, check them out!

[@jamiehiker]

Thank you for this podcast! I randomly found your podcast and feel it was so helpful! I forwarded it to my email so I can refer to it again on difficult days. ❤

[@marybutlin5605]

Great video, respect your knowledge, insight and presentation. Your message is right on with good examples.

[@aimeemariefournier1013]

Absolutely deserve dignity

[@Recordesk]

Thumbs up to have what we more of versus what we need less of. Where our attention goes our energy flows. Wholeheartedly, with admiration and enthusiasm...good to go in North Texas

[@icareforyourbrainwithdr.su7103]

Thanks N Day, good to have you here with us

[@sallywilson1699]

Please consider making a video about Vascular Dementia

[@icareforyourbrainwithdr.su7103]

I think I have Sally, check the archives here on youtube.

[@jerihensley4688]

Thank you watching from California. Very good information.

[@icareforyourbrainwithdr.su7103]

Glad it was helpful!

[@doviedesirey7888]

My mother was referred to the medical social worker who used the slum and asked questions about ADLs but didn’t complete a full evaluation as much as a neurophysiologist. I completed SLUMS on patients as a social worker in a geriatric Psychiatric unit but the SLUM or MOCA are not thorough enough. Thank you for the reminder

[@icareforyourbrainwithdr.su7103]

Right! They have there place but it usually isn't enough!

[@vangiebaldwin5115]

Thank you for your information, this helps me as a care partner. From Arkansas

[@SnapDragon764]

From Pacific NW, struggling to get started down the diagnosis road…I think this started with an episode following a 14-hour back surgery, but my impression is no one wants to look at it for liability reasons and that isn’t the issue at all. The negative personality traits seem to be worse.

[@icareforyourbrainwithdr.su7103]

Get a referral to a neuropsychologist, they should help you.

[@marirose19]

I know for a fact that with certain types of dementia, especially FTD, general anesthesia will make the person living with dementia worse!!

[@jilldooley5721]

Great advice! My dad still lives alone and refuses to move. I would say he is at the moderate level. Do you have any suggestions?

[@bettyhonold2842]

From the U.P. of Michigan. Husband is in a nursing home. Parkinson’s/LBD . This is so hard.

[@user-wk3sx6yh7n]

So glad I found your vlogs. White matter disease…yes. Live in upstate NY.

[@susanmusnicki8583]

My mom continues to tell me that she is looking for or asking for family members or close friends that have passed. At first I was trying to explain that they were in heaven until a counselor advised me to “go with it” mom will ask me when I leave at the end of my visit to go check on her mom on my way home. I have been saying okay mom I will. This is seemingly working out better. I strongly believe she does not have Dementia,but Delirium without question or possibly both?

[@manuelcuellar8954]

Thank u Dr I'm from salinas ca enjoy your videos

[@icareforyourbrainwithdr.su7103]

Thanks for watching!

[@sandymora2822]

Wonderful!

[@aimeemariefournier1013]

Also, if none of my family has ever have it, should I worry about it

[@DonnaRigsby]

Thank you from nj!

[@annmcfarland3882]

I'm in a suburb of Phoenix, Arizona.

[@aimeemariefournier1013]

I’m a recreational therapist

[@icareforyourbrainwithdr.su7103]

You do very important work!

[@aimeemariefournier1013]

@@icareforyourbrainwithdr.su7103 so do you. Thanks Dr Sullivan

[@aimeemariefournier1013]

Do you think it’s cars from environmental toxins or something else?

[@icareforyourbrainwithdr.su7103]

It's a complex combination of genetics and risk factors.

[@aimeemariefournier1013]

@@icareforyourbrainwithdr.su7103 I am also trying to understand it better because of work and mom is going on 90 but plays games and puzzles and reads all day. We all do high doses of omegas also