Psychologist shares beautiful advice for talking to people with dementia

[NurseJackie]

This is what we eventually ended up doing with my sister... it served no good purpose to continually remind her that Mom and Dad were gone. When she asked about them (or other beloved relatives), we'd lie and say they were fine. Or "last time I spoke to her she was doing fine" or "they're still back in [Hometown]"

https://www.upworthy.com/psychologist-advice-people-dementia

(snip)

Psychologist David McPhee shared some advice with a person on Quora who asked, "How do I answer my dad with dementia when he talks about his mom and dad being alive? Do I go along with it or tell him they have passed away?"

McPhee wrote:

"Enter into his reality and enjoy it. He doesn't need to be 'oriented.' Thank God the days are gone when people with advanced dementia were tortured by huge calendars and reminder signs and loved ones were urged to 'orient' them to some boring current 'reality.'

If dad spends most of his time in 1959, sit with him. Ask questions he didn't have time for before. Ask about people long dead, but alive to him, learn, celebrate your heritage. His parents are alive to him. Learn more about your grandparents. If he tells the same story over and over, appreciate it as if it's music, and you keep coming back to the beautiful refrain.

This isn't 'playing along to pacify the old guy,' this is an opportunity to communicate and treasure memories real but out of time."

(snip)

Link to tweet

[Walleye]

1. Hearing the same stories over and over. Like music. I like that

Once they are gone we miss the stories being told even though we know them by heart.

[blueinredohio]

2. At first I tried to orient my dad to what day it was or what was going on in the world

I realized he wasn't going to get better so that's what I did just agreed with him whatever he said. The hardest part is when they repeat over and over they want to go home even though they are home. Eventually he didn't talk at all.

[BeerBarrelPolka]

3. I've been

I've been singlehandedly taking care of my mother for 12 years. Her Alzheimer's has gotten to the point where it's become intolerable to handle. That's all I will say on this subject matter.

[NurseJackie]

4. That's a heavy burden. Sorry you're going through that.

We are fortunate that my sister's dementia did not manifest itself with angry outbursts or anxiety. She would wander, and not recognize where she was (even though it was home). She also believed that the people inside the TV were real.

Another VERY strange thing to observe was that she'd have lively and animated chats with friends on an unplugged telephone. If you didn't know the phone was unplugged, you'd SWEAR that there was someone on the other end of the line. (And I guess in her mind, they were.) --- It was unplugged because she was dialing 9-1-1 and calling 800 numbers on the TV screen.

[BeerBarrelPolka]

5. Thank You

Thank you so much sincerely!

My situation is that my mom is an only child and I'm an only child. My parents divorced when I was around one year old and I didn't know my father. Hence, I have absolutely no help whatsoever in this matter.

I had to disconnect the home phone because of stuff similar to what you've written. She'd make random calls to unknown numbers, call 411 and rack up crazy charges, etc.

I went through the violent stage with her. Extreme violence. She's very ambulatory and will bolt at any given moment. I am having terrible difficulties with social services as they aren't geared for this in my current area. Suffice to say, it's not a pleasant experience for both of us.

[niyad]

12. Please accept a virtual hug and support in your extremely difficult situation. Many here

have experience, so feel free to lean on your DU family for support.

I am so sorry that the agencies that are supposed to help are not there for you and your mother. The social safety net in this country sucks. I know that some churches have outreach programs, respite care, etc. Is there anything like that available?

We are here for you.

[BeerBarrelPolka]

14. This means a lot

to me. I am struggling extremely to go on like this.

She was in adult day care for a few hours a day but they kicked her out a while ago because she had gotten worse. I moved from Chicago out to a rural area about 8 years ago because I thought it would be better for her, but it was the biggest mistake I ever made. I have no outreach to the churches as the few that are here are very small and not setup for this stuff. The volunteer agencies I contacted have "helpers" that are too far out of my vicinity as well.

I try to do my best but it becomes a pressure cooker.

[plimsoll]

20. I don't think most people get the situation.

My mom was smart enough to protect herself financially before things went too far, but that had it's own consequences. I'd get asked by people from our home town why I didn't do anything, and what can you tell them "I can't do anything because she hasn't been declared incompetent." Once we where past that hurdle the abuse started, initially just verbal and eventually physical, fortunately it was only directed at me and she could afford a caretaker. You have my sympathy, but I'm well aware of the real world value of that.

[BeerBarrelPolka]

21. I appreciate it

You understand. basically no one out here where I live does. Like you've written, they all seem to have some smart ass advice. Most of it is hire a caregiver. First off, where are not able to financially. Secondly, the local agency tried to get my mom a caregiver during Covid lockdown. They either never showed up, showed up once and never came back, or came once in a blue moon. So the local agency couldn't do more for us to help.

Thanks for your input. It means something to me.

[MontanaMama]

36. I'm sorry you've got this going on.

I lost my dad to Alzheimer’s and cared for him the last few years of his life. It can only be described as brutal. Sending you love and support.

[BeerBarrelPolka]

38. Thank you

Believe it or not, it feels good to read that people actually care.

[KT2000]

58. I feel for you

This has not happened to me but I have seen friends who have gone through this. It is incredibly hard on the caregiver so you also need to think of yourself in these decisions.

Are there any resources for you at the county level? Can you find a memory care facility in a town or city that will accept her? No matter what, you are going to have to use up all her assets, if she has any, so she can go on Medicaid. The state should have advice for getting on Medicaid.

Please protect yourself as well as your mother.

[BeerBarrelPolka]

59. Thanks Very Much

I've dealt with the county for several years. They're really not helping much because what they have to do is to refer to outside agencies (non-gov't) and the level of workers out here is abysmal. There were scheduled to come by last week for her yearly interview/review but the lady's car broke down. So it's rescheduled for this week Thursday.

I haven't worked in years since I've had to take care of her fulltime. Most definitely I will be in a bind once she's in a facility as I will be forced to move (we rent). My savings has been gone for a while now so I've been getting by by selling my stuff. She just has social Security and nothing else so Medicaid is not going to be a problem. I just can't put her in a rat trap. I won't do it.

I've declined a lot. Went from being a top flight athlete to a Woody Allen neurotic. lol. The isolation is what's killing me. She's in her own world and she's ok there. I'm in our world and it's bittersweet and desperate at times.

Thanks for the thoughts.

[renate]

64. This is so hard to read... I can't imagine what it's like to live it

I am so, so, so sorry.

[BeerBarrelPolka]

66. Thank You Renate

I always thought of myself as a bit wise and worldly. I never in my wildest dreams envisioned a scenario like this. I was clueless.

Many people think of Alzheimer's as just being forgetful. I was one of those people. It is so much more than that. Each individual can manifest different behaviors of course but to me, the most tragic circumstance is the metamorphosis that takes place. She is no longer my mother. I am no longer her son. We are strangers to one another. Unlike some others, my mother no longer enjoys the things she used to enjoy, the food she used to eat, the songs she liked to sing. I don't know her anymore. She doesn't know me.

She has no friends. My friends except for one who calls now and then, have abandoned me. They can't stand to see what I have become as well as her. So my mom and I are two strangers cohabitating until that time, alone together.

[NurseJackie]

73. It takes a lot of courage. And in the end, we never know what we're capable of doing...

... until we have NO OTHER CHOICE. I never in my life imagined I'd be changing my dad's soiled diapers/underwear. The thought is disgusting (obviously) but when someone you love is IN NEED, you do what it takes. Modesty be damned... just do it and get it ove with. It's not easy for the person being cared for or changed either.

He would always apologize to me. "I'm so sorry you have to do this. I'm sorry I couldn't hold it." But I always reassured him that it was no big deal... everyone poops... try not to think about it... "I'm glad to be here for you, Dad."

[BeerBarrelPolka]

76. You're

You're a good person. Not everyone can do what you do.

[renate]

82. I know you've already looked into all the resources available, so I hate to ask

It's probably super annoying to get advice or questions as if you haven't already tried everything, but is there any chance she's eligible for hospice? https://www.alz.org/help-support/caregiving/care-options/hospice-care

[BeerBarrelPolka]

83. Thanks

I have a meeting with Senior Services this Thursday and that is a topic we will cover among others. I will let you know what they say. And I appreciate you taking the time to find that link. If I can ever be of any help to you no matter the subject, please reach out and ask.

[renate]

95. You're a sweetheart!

How kind of you! Especially when every single one of your mitochondria must be exhausted and you're under so much stress.

Good luck! I hope you get some good answers on Thursday!

[BeerBarrelPolka]

103. Update

I figured I would give an update to Thursday's meeting with Senior Services.

The ladies were very friendly and understanding. They saw what I'm going through. The bottom line solution? Put her in respite care for 48 hours only so I can get a two day break. No caregivers, no other aid whatsoever. Just a one and done deal for a 48 hour reprieve, "IF" it gets approved. This would not be a recurring thing.

I'm still stunned by the lack of help here.

[renate]

104. That's absolutely terrible news

Oh, my gosh. To have had a shred of hope that things might improve, and then that's the news you get... you must be despairing. I'm so sorry. Life must feel like a treadmill you can't get off of.

[BeerBarrelPolka]

105. Yes

Yes it is. I no longer see a way out at this point.

[GeoWilliam750]

74. Very big virtual hugs and sympathy

My mother took care of my father for a decade when he had Alzheimer's. It is absolutely brutal. Fortunately, he never forgot how much he loved my mother, but it took an enormous toll. Small Midwestern towns are not really equipped or staffed to help despite their good intentions.

Come back frequently with updates. We may not be able to come and carry a few shifts for you, but we can and will listen.

[BeerBarrelPolka]

77. Awesome

Thanks for writing that. I'll be here for sure, unless my friendly neighborhood MAGAts come and get me

[calimary]

87. All my sympathy, BeerBarrelPolka.

My mom and dad both lingered for awhile, as their decline accelerated. This is such a hard way to come to an end. It’s so hard on EVERYONE: the terminally ill patient and everyone around that patient.

Is there anything you can do that’s supportive - of you? Do you have any access to counseling or other emotional help?

YES you can and should talk it out, here. Get feedback, ideas, concrete suggestions, and SUPPORT! Even if that support is just emotional in an online forum. People here have all kinds of perspective and experience. SOMETHING in all that might give you direction, or possible solutions.

Are you part of a church or a parish? I’ve long felt that our churches ask us for support (financial and otherwise), and in my opinion that obligates them to step in and help out. Just a thought. Hopefully others here on DU can come up with more ideas and research.

What about a gofundme approach, to help build some resources to get you some help? Is something like that a possible option? I’m glad you’ve shared your situation here. People are really creative here, and the breadth and depth of experience and knowledge can be tremendously helpful. It’s a real treasure house. And the sympathy, empathy, problem-solving, and emotional support is all quite wonderful!

[cilla4progress]

92. I just posted about this on the

end of life forum. I presently know of several old friends who have or are lingering in assisted care. Physically they are alive, but mentally have checked out. I don't want that end for myself. It's a very personal call and I'm sure there are always unknowns.

[BeerBarrelPolka]

98. Thank You

Thank you Calimary. You and the others on here have given more input than I've had since this all started years ago. I am overwhelmed.

Thing for me regarding counseling/support groups. I am immersed in Alzheimer's here 24/7 for years without a break. Honestly, I don't want to get with a group (cyber) and spend that hour still immersed in Alzheimer's. I want to escape it. I want to forget about it and take a Calgon bath so to speak. I may be looking at it from a perspective that other's might think is wrong. It very well may be wrong. But I just want to be able to enjoy myself and shut my brain off for a while. I did try it last year during lockdown and the only group available was a zoom setup and it was not a good fit for me.

I truly don't feel comfortable with a gofundme. Someone did try to setup a gofundme page for me quite a while ago and approach the people of the martial arts community. It was a flop. Didn't even raise one single penny. It was humiliating for me to be honest. I poured my life into that community and literally trained people from all over the world, including all sorts of champions that I took to the top rung of the ladder. I received zero response. I think that alone set me back and into the deepest depression I ever experienced. I can't write anymore about it......

As for church, I would say my faith left me many years ago. I know I must sound grumpy or something. I suppose I am. I think what I really need/want is the ability to just be able to spend time out among people again. Having some beers, eating some food, watching some sports, shooting pool, with old cronies or new blood. I want to be able to be me again, if possible. I wish I could write more but I just can't at this point. My story is long and it's filling.

I just want to have a clear mind

[cilla4progress]

93. Will hold you in

my heart, BBP. 💖

[BeerBarrelPolka]

99. Thank you

It's not just words in a forum. Right now, this forum has made me feel an escape when I'm on it and I am grateful for you folks.

[brer cat]

6. Good post, NJ.

Very helpful.

[NurseJackie]

7. I hope everyone agrees.

[SleeplessinSoCal]

70. My hubby experiences tragic news events over and over.

As though hearing it for the first time. I express my empathy at the time and how bad I feel for him. I don't want our relationship to become a script. And so far it has worked out well.

The disease must have thousands of manifestations. And our relationships must impact them differently. But if empathy isn't part of the calculation, both lose out.

Thanks NJ for the poignant story. Makes so much sense.

[Tracer]

8. I can relate.

My sister has Alzheimers and is in a long-term care facility.

When I'd visit, she would regale me, for instance, with stories about how she was getting married. (She's been married to the same guy for 50 years).

I'd ask her what she was going to wear, what church etc. and who is the lucky man. Her answer was the name of her current husband.

Then I felt AWFUL!!! I didn't think that this was helping at all, but was playing a nasty trick on her.

So I'm not real clear on how catering to delusions is being helpful at all.

[BeerBarrelPolka]

9. It is tricky

I went along with my mom's delusions for a while and it backfired terribly. She would ask about her parents (both long deceased) and I would always tell her they were fine. Then one day she left the house to go visit them. She'd attempt to make phone calls to them, etc. This also happened with other situations of that nature.

I've learned that advice needs to be tailor made. Much like people can have allergic reactions to some medications, not all dementia/Alzheimer patients react the same to stimulus.

[NurseJackie]

10. At one time we'd tell her the truth... and she'd grieve all over again.

Even if it was for "just ten minutes" it felt like an eternity trying to distract her and move on to the next subject. So, in our situation, simply joining her in HER reality was the least stressful thing to do for her. Her questions asking about Mom and Dad were fleeting. We'd respond "they're fine" and she'd move on to the next subject.

She had long since stopped driving, but she'd wander if left on her own for too long. That was when she was moved into nursing care.

Her disease has progressed to the point that she's mostly silent now. No smiles, no happiness, no recognition. She'll look at you when speaking to her, but that's all. She'll take her pills and she'll eat when fed, but darkness is closing in on her world.

[BeerBarrelPolka]

11. I

I am so sorry for what you are going through. It's truly heartbreaking day after day to see a loved one like that. Again, I am truly sorry.

[NurseJackie]

13. Thanks. She's 100% bedridden and recently transitioned to hospice care.

No more trips to the ER. Just oxygen, food, water, and palliative care (fortunately, antibiotics are considered to be comfort-meds rather than curative... even though they do "cure" UTI's.)

One day there will be a cure. Or a vaccine.

Every time I forget someone's name, or "misplace" my car in the parking lot, I wonder if it's going to happen to me. Mom lived to be 98 and was sharp as a tack until just before the very end. Cancer took Dad at a youthful 89... it was quick, so we didn't see his mental state degrade (other than how his pain meds affected him.) My sister is in her mid 80's and we've watched the decline for about 8 years now. Slowly at first... then it just sped up suddenly.

Getting her qualified for Medicaid was a challenge. I wasn't directly involved in that... but I watched my niece and nephew go through it all. It was tedious but finally they were able to spend-down and get all of her expenses covered. She's being well-care-for.

Good luck!

[BeerBarrelPolka]

15. Understood

With me, I am in the same boat as my mother essentially meaning, I have no one to take care of me at all. So if something should happen to me, I will most likely not be found for a length of time.

[Random Boomer]

24. I heard a fascinating TED talk on memory

The speaker said you shouldn't worry when you forget names or where you put your keys. Those are normal, expected lapses of attention and aren't warning signs of Alzheimer's.

When you forget what a key is for, that's when you are facing real issues.

[NurseJackie]

39. That's good to know.

When a loved one is suffering from dementia, this is something that's hard not to think about.

She would confuse words and call a safety-pin a clothes-pin. She would say elbow when she mean knee, and knife when she meant scissors. Thinks like that. --- It's interesting to know that her mis-matched words were very similar in many ways, so clearly she was looking in the right part of her brain's filing-cabinet system for the stored word, but she grabbed the wrong file.

[moonscape]

54. Yes, I heard this analogy nearly 20 years ago and

only partially agree. My mom’s early symptoms were forgetting things she never forgot before, beyond common keys, capital nouns, etc. The equivalent of forgetting what keys were for was well in to middle or later stage.

[LastDemocratInSC]

16. "His parents are alive to him"

In my Dad's last days he began greeting me enthusiastically, shaking my hand, hugging me, and always asking "Where have you been?". I visited him every day and his short term memory was poor so I could only say the usual things about work, how my wife and our grandson were doing, etc. All appropriate answers in my view.

Then he asked me one day "How is Louis?" I didn't know what to say because I didn't know a Louis. But he kept asking about him and finally gave me a hint: That a man named Louis had played a funny practical joke on "me" at the business where Louis and "I" had worked together long ago. In an instant I felt the combined emotions of surprise and love because I realized that my father had forgotten who I was and now believed I was HIS father.

From that day forward we reversed our roles in life. I became his Dad and felt the rush of goosebumps each day when he greeted me with his hugs. My father was happier than he had been in years. I had disappeared in his memories but had been replaced by someone he truly needed more. It's probably the single best thing that ever happened to me.

So yes, long departed parents can truly become alive again.

[NurseJackie]

18. Wow. Thank you so much for sharing that.

[LittleGirl]

31. Thank you for that story.

Made my heart swell and break at the same time. Tears.

[Hortensis]

55. :) Tears also. What a lovely gift for you both.

Thank you for sharing this.

[BunnyMcGee]

97. This is a very moving story...thank you

[mcar]

17. Meet the people where they are

I love the idea of being able to find out more about the loved one's life and other relatives you didn't know.

[Wicked Blue]

19. When my mother-in-law had Alzheimers

my husband and older daughter drove 200 miles one way every other weekend to give my father-in-law some respite from caring for her.

My daughter, who was in high school, frequently played card games with her grandmother. Her grandmother regaled her with stories about growing up in Brooklyn NY. Many of the stories were repeated, but I'm sure my daughter learned a great deal from them. She told me she enjoyed hearing them.

[NurseJackie]

84. The old stories are the best...

... listen now before it's too late, I keep telling myself.

[40RatRod]

22. As an almost 20 year Hospice companion, I have found that if you focus on the past...

...their memories of those days may be surprising sharp and they really enjoy talking about those days.

[Captain Zero]

26. Yes that is so with my mother.

She can't remember what grades the grands and great grands are in, nor what schools they go to. But she can talk about being the little sister to five brothers in Ohio. She rides behind Raymond on his Indian motorcycle, she goes on picnics with Johnny, and she recites Carl's letters from the Phillipines with the Seabees in WW2. She can talk about Elmer's John Deere mechanic skills and fixing tractors stuck in the muddy fields. And she remembers the time time Clarence brought home a mule and her dad made him take it back. Maude and Molly the farm's horses would keep doing their jobs just fine, Grandpa thought. I'd much rather listen to stories like this than help her struggle to remember minor daily details.

[Rebl2]

23. I finally learned

this with my father who had dementia. Once in a while he he would add a new bit of information that he had not mentioned before. I miss him. He died in August.
My mother has Alzheimer’s and while she still remembers me, trying to communicate with her is difficult. All she seems to do is repeat what I say and when she does try to talk about something it is gibberish. It makes no sense. It’s frustrating and sad.

[NurseJackie]

27. I remember one visit (she was already in skilled-care) my sister told me...

... that she wanted to buy a new car. Rather than trying to explain all the reasons she couldn't afford one, and that she was too weak to drive, and that her vision was failing... I simply agreed with her. "That's a good idea! As soon as you're stronger we can do that!" --- And that was all she needed to hear. It was a fleeting thought that she verbalized, and in a flash it was gone.

My sister also got to the mumbling stage. I couldn't understand words, so I never knew if it was random words or actual sentences that she couldn't enunciate.

When she could talk clearly, she'd often stop in the middle of a sentence... and we'd wait a moment or two hoping she'd recapture the thought. She'd give up and admit that she couldn't remember what she wanted to say. --- We'd always say "don't worry about it... it will come back to you in a minute". Sometimes it did, but often not. Still, just the reminder that it was okay, and the optimism that it would come back to her was enough to keep her from getting too frustrated about talking AT ALL.

[wnylib]

25. A friend of mine does this with her

mother who has both schizophrenia and dimentia. Her mother will sometimes object to medical treatments because "they" told her that the doctor would kill her. My friend tells her mother that she (the friend) talked with "them" and they admitted to her that they made a mistake and it was a different doctor who was the bad one.

Her mother eventually gives in.

[Jarqui]

28. My mother had Alzheimer's

For about 12 years (from first dementia diagnosis)

Of the five kids, I was the most difficult. She picked on my brother and I was defensive of him. I would call her out and prove my point. She held grudges and the one against me lasted a lifetime.

However, she was my father's wife. And my siblings mother. I did my best for her - particularly through her Alzheimer's and through her taking care of my father. Most of the time, we got along. I cared about her and her wellbeing always. We just weren't close.

Her brother was my favorite uncle. She felt he and I were alike. Always joking around. Playfully teasing my sisters. etc. Both her parents had passed when she was 15. He took her in and took care of her. They were were very close. Next to my Dad, ignoring her kids, he was the second most important person in her life. He died of cancer about 31 years before she passed.

The best conversation I ever had with my mother was when she was hospitalized with Alzheimer's and some other things. I sat on or beside her hospital bed for about 4 hours after dinner talking with her until she fell asleep. I didn't say much. Throughout the conversation, she thought I was her brother. We had had a terrible period previously with her where she woke up each day asking where my father was. He had passed years before and she would eventually figure it out within a couple of hours and re-experience losing him daily. I deliberated killing her to stop this daily cruel-beyond-words horror. Fortunately, it faded away or receded. No way was I going to put her through the loss of her dear brother again. So I listened as if I was her brother. It was beautiful. She was so happy and so relaxed. I'd never seen her like that. I kind of saw first hand what a wonderful relationship they had - kind of reaffirmed why he had been my favorite uncle and so dear to her. I felt a conflict of whether I should say something - like I might be violating a privacy but the fear of hurting her quickly shut that down. I'll be grateful for the rest of my life for those four hours. I got a beautiful insight to my mother I never would have otherwise seen.

Unless it is hazardous to their health or something significant, there seems to be no point correcting someone with dementia. I've learned to be that way with others.

[niyad]

29. Thank you for posting this extremely valuable information. I have been saying similar,

although not so eloquently phrased, for years. Quit "correcting" the person. Quit demanding that they remember what you remember. Accept that they are seeing what they say they are seeing. One friend was telling me about her partner, who said he saw a rat on the drapery rod. She calmly replied "Too bad there aren't two of them. We could have a race." Many years ago, I was visiting a friend in the hospital. Looking out the fourth floor window, he exclaimed about the cows flying past. I just said, "I hope they are wearing parachutes."

We have to remember that they are living in a parallel universe, contiguous, but different. It is a very hard concept for some to grasp, but, once grasped, makes things slightly less frustrating when It comes to cognition issues.

[Dial H For Hero]

30. Good advice. My father spent his last few years in a nursing home, and towards the end he was

firmly convinced that he was going to buy a car and move in with me. At first I tried explaining why that was impossible, but quickly realized that he was thoroughly enjoying going over car models with me and telling me how he could help out at home (bear in mind he couldn't walk at this point), so I just went along.

Whatever makes them happy. Period.

[bigtree]

32. I found it effective to never mention that something had been said before or repeated

...to always answer as if it was the first response.

Tedious, but a less challenging way of effectively communicating which is ultimately less stressful for all.

I didn't find it very helpful to feed into the unreality. We still needed to keep all the players involved reasonably indentifiable, because of misunderstandings which became untenable.

My wife, for instance, couldn't be expected to pose as whatever floozy from his past my dad (living with) imagined her to be. Nor was I going to refer to myself as some stranger my dad believed me to be.

My experience was to wait a few seconds and go back at him. Almost always, the errant perception or notion had passed and would allow us to continue on a sounder level of understanding.

Of course, the time eventually came when nothing was communicated between us anymore.

[NurseJackie]

37. Absolutely!!! You'll make them "afraid" to speak or self conscious...

... about repeating themselves. When my sister did that we knew it was a new question for her, so we responded as though it was the first time she'd asked it.

Of course, the time eventually came when nothing was communicated between us anymore.

This is the most heartbreaking part. The silence. The blank stare. No smiles. No joy. No emotion.

It's insidious.

[bigtree]

44. thanks for the thread

...always good for survivors and caregivers to have experiences of others to relate with their own tragedies to remind how connected many of us are by these personal challenges.

So many stories...

My dad decided he wasn't going to move from his chair one Sunday morning after getting dressed and ready for church.

I always drove him in, and it was absolutely the best of our lives in those few minutes driving slow in our pickup truck, through the neighborhood to the meeting house as he marveled anew each time at the 'cleanliness' and beauty of the surroundings, Lyle Lovett crooning 'Step Inside This House' on the tape player.

This morning, however, he'd got it into his head that he was a teenager again, and was reliving an incident where he and 'Jimmy Puputkis' and a girl they called 'The Funky Onion' had presumably robbed a church, gotten caught, and were sentenced by 'Judge Schrack.' (actually, for all I knew, this was some television show or movie he'd seen before)

After about an hour of pleading with him to tell me what was wrong, he looked up at me with a mournful look and said, "A church! We can't rob a church!"

I almost lost it, and I sent him back downstairs, I supposed, to take his suit off and forget about church that weekend. But, a few minutes later, he was on the stairs asking when it was time to go to services.

"Let's go," I said to him, as if we hadn't just had one of the most surreal experiences of my life - and we went on to have one of our classic Sunday drives without another word about Judge Schrack, Jimmy Puputkis, or The Funky Onion.

[NurseJackie]

80. Wow! Fun... funny... and sad. That's a great story! Thank you!

We're helpless to do anything other than to just go-with-the-flow and help our loved ones to feel as safe and loved as possible.

[George II]

33. My mother suffered from dementia for her last 10 years. Although it was difficult to watch her...

...at times, one saving grace is that she really didn't know she had it and she didn't suffer. Physically she was healthy and lived to the age of 94.

One time when I visited her she asked my age. I told her I was 60, and she replied, "you're older than me!" Another time my wife and I visited, and she asked my wife "who is your friend?", referring to me.

What's really sad, though, is when younger people suffer from dementia yet still try to function in the real world.

[NurseJackie]

43. You're right about that. It is sad.

[Doodley]

34. Not always the best advice. Depends on each patient. My mother-in-law for example

had delusions that the floor was swarming with bugs and they were under her skin. She scratched herself to death and was very anxious
about it. Not best in that instance to play along. There is a line where reaffirming a false reality makes things worse and will actually accelerate the dementia symptoms and lead to earlier death. I am more inclined to keep it real as long as possible.

[Deminpenn]

46. There is a difference between dementia and delirium

Delirium can result from something like a UTI or other infection and can be treated.

[Doodley]

49. And? Why are you assuming that I don't know that? I looked after my MIL for years and this was a

daily occurrence. Her skin and blood became so badly infected that she almost died from it several times.

I give up. Thank you for your contribution.

[Deminpenn]

102. Just fwiw as some people, including doctors, don't

distinguish between the two. And, yes, the doctor misdiagnosing my parent really happened.

[BlackSkimmer]

51. I think that would be obvious.

I believe the author is talking about those seemingly “stuck in the past.”

[Doodley]

53. Thank you for your contribution.

[BlackSkimmer]

56. Certainly.

You’re very welcome.

[Tracer]

35. I would like to tell what was helpful and enjoyable for my sister.

This was a couple of years ago, so she wasn't as bad as now.

I had found some old family slides (some at least 60 years old). Not having a slide projector, I went on eBay and bought one very inexpensively. Spent hours sorting through them.

Then I set up a time when my daughter, my sister's daughter and me put together a slide show in her care facility room.

It was so good to see her smile and recognize places and people. She even remembered a boy cousin's name that I had forgotten.

What make it harder for me, is that she was the "smart" one in our family. She was very successful in business (was even a Vice President of a national company). Alzheimers is a painful and tragic disease.

[Rebl2]

40. Same here

My Mom was a Vice President at a bank and was so smart when it came to money. Then along came Alzheimer’s. It has really been difficult and sad to see this smart woman develop this disease.

[OAITW r.2.0]

41. My mother's situation was completely opposite.

She was diagnosed with ALS in the mid-90's. Her physical conditioned deteriorated over 4 years, but her mind remained sharp to the end. Really tough dealing with someone whose mind clearly understands the outcome, but is powerless to do anything about it. At the end, all she could do was communicate with her eyes....

[NurseJackie]

42. ...

[marie999]

45. I had a friend in my condo complex in Florida.

When lucid she would tell me she didn't want to go to the pool because she couldn't remember her friends there. I told her won't it be great to make new friends every day? Of course, some of her friends didn't remember her either.

[NurseJackie]

71. Perfect! It's all about compassion... being fearless... finding silver linings...

... looking on the bright side... seizing opportunities... seeing humor in absurd situation... calming fears and anxieties.

We were saddened that all of my sister's friends stopped visiting or calling when she went into long-term-care. I understand it stressful to see the ones we love begin to fade away... but their visits would have meant so much to her.

You're a good friend and you had the right attitude. I'm sure she was glad to have you there.

[Ms. Toad]

47. My spouse has been diagnosed with mild cognitive impairment,

consistent with the early stages of Alzheimers.

Fortunately, it has been relatively stable for a number of years. Unfortunately, in my need to get her to recognize something was wrong so she would get tested, I was asking the impossible and it has severely damaged our relationship. I ultimately did get her to get tested, and she is strictly a follow-the-doctor's orders kind of gal, so she is on two Alzheimers medications. But she still insists nothing is wrong with her.

Her gift of gab allows her to talk so smoothly that it is only people who have experienced her fabricated memory directly who recognize anything is wrong (and no one, outside of my parents and spouse, are aware of her diagnosis). And once her mind has created a new narrative, it sticks so she repeats it nearly verbatim every subsequent time. It was fascinating to see this play out in the testing they did. She was shown a picture and asked to reproduce it. She did, with several variations. She was later asked to reproduce it - and reproduced her version of it flawlessly several subsequent times.

Once I realized she was incapable of the kind of executive functioning (her most significant deficit) that allows her to recognize her deficits, I was more able to live in her world. (And, there was no need to bring her back to reality to explore what was wrong.) But it is very frustrating because - to all the world - she seems fully functionally. As long as her tall tales are harmless (which they are most of the time), I don't challenge them. But it doesn't make things any easier when a joint project takes several steps (done in a particular order, for a particular reason).

And COVID has been particularly challenging - she will go on tirades about people not wearing masks. So intellectually - as a one-step inquiry she understands masking is important. But when I ask her about masking around her sister (with a son she sees regularly unmasked who is a rabid annti-vaxxer) she can't do the two-step thinking to recognize that she is exposing herself (and me) to everyone her sister is exposed to - inlcuding her jerk of a son. And when she brought a friend over to fix our bathroom water faucet yesterday he came in unmasked. I turned on the exhaust fan in the bathroom to mitigate the potential lingering virus after he left. Her response was to go turn it off and to inform me that he was fully vaccinated and everything.

So - living in their world is definitely the best way to go. But for more functional people with less severe impairment it can be really hard - since they are still functional enough to pose a danger to themselves and - especially - to others who are unaware of their deficits (including some who rely on her for critical advice, which may or may not be accurate).

[NurseJackie]

52. I had to make a conscious effort to NOT speak to my sister like she was a child.

... and NOT do things to "test" her memory or try to find out how far she had fallen between visits. All of these things can be determined by any observant and loving relative or friend WITHOUT asking "Do you know what day it is?" and "Do you remember me?" --- For the longest time, my sister was well aware that her mind was going and it was both frustrating and embarrassing for her. It served no good purpose to quiz her like that.

Good luck with your situation. Even though advice from others is helpful, it often seems like everyone must find their own path. No advice can be a magic-pill for every situation, but family and caregivers can look for common themes and similar threads that can be used as somewhat of a shortcut in finding/learning what works best in their own situation.

[Ms. Toad]

62. I've gotten used to just swallowing my pride

when she repeatedly tells stories that are entertaining, but aren't true that paint me in a foolish light, or have her doing what I actually did. 99% of the time I can just ignore it - my goal is to just let it slide unless she is saying something that is hurtful to someone or something beyond my pride.

The only testing I ever did was when I was desperate to convince her there was something wrong so that we could get an evaluation early enough to make a difference if it was somethng other than Alzheimers.

Now that I know where the deficits are, the challenges are largely functional ones - when she believes herself capable of more than she is capable of. It usually results in frustration, throwing her hands up, telling me to take over, and being unwilling/unable to give me enough information to unwind to where things went wrong. (It also means there are things I just have to do myself out of self-preservation.)

And - with COVID - finding out when she has been engaging in risky behavior so I can take steps to protect myself. I have to peel the layers of the onion back from "I always mask when I'm outside of the house," to "Yes, I went to lunch with my coworker who was diagnosed with COVID the next day, and who came into the common area of the office day after diagnosis."

It's a hard line to walk between accepting the reality that she is going to engage in unsafe behavior as to COVID (and there is nothing I can do to prevent it) - and getting enough information about when and how she has been unsafe so I can protect myself (by masking at home and sleeping in a separate room after the riskiest encounters)

[NurseJackie]

63. Covid has been challenging for us since the long-term care facility restricted visitors.

On the bright side... they did NOT have any covid outbreaks. But, I missed a lot of time that I could have visited before she took a turn for the worse.

Before my sister was moved to memory care, it was obvious what was going on... and almost ALL of her friends dropped away. They stopped visiting and stopped calling. Even before covid restrictions on visitors, when she was still lucid and friendly and happy to see familiar faces... NOBODY (except family) went to visit her.

That was tragic and sad. I understand the stigma and the emotions and having to face one's OWN mortality by viewing the slow demise of another.

Maybe they'll make an effort to come to her funeral.

[JustAnotherGen]

48. Beautiful Idea

[BlackSkimmer]

50. Thanks for this.

K and r.

[NurseJackie]

72. ...

[rickyhall]

57. I loved my great grandmother's stories when I was growing up.

She was born in 1879, in Bell Buckle, Tennessee, 13 of 15 children and she told me about every one of her brothers and sisters and her wagon ride from Tennessee to Texas in the 1890-somethings. She was a Suffragette and hard against liquor, totally fascinating, too.

[Hekate]

60. Great advice, & most of all a beautiful, if heartbreaking, thread. Thanks, all who contributed.

[seta1950]

61. To me

That makes a lot o sense

[Wingus Dingus]

65. When I worked in a nursing home back in the 90's, we were still in the

"attempt to reorient" times. Although I often didn't bother, because it was clear that most of our dementia residents were too far gone to benefit from the attempts--and instead they would just suffer from the confusion of being told something else that ran counter to their own mind's reality. Why confuse and upset people, with no therapeutic benefit? I had an older gentleman, former rancher, who would sometimes wake up at night and hear the other rooms' nursing call lights go off--he would call me in to tell me the "teakettle was going off on the stove". I said, "OK, I'll take it off the stove" and that was that, and he would go back to sleep with peace of mind.

[NurseJackie]

67. I was with my sister when she was seeing things that weren't there...

... "where did that cat come from? how did he get in here?"
... "why is that man walking in our yard?"

And I'd just say I don't know who he is, looks like he's gone now. Or, he must have wandered in by mistake, I'll let him out.

I'm sure she still had "regular" dreams, but she couldn't tell when the dream ended and her dream-like reality of being awake was beginning. She had once asked me how she got back here (in her own bed) because just a moment ago she was in a furniture store (apparently she was shopping and got locked-in when the store closed) so she fixed dinner and then went to bed... and woke up in her own bed.

It's real to her, so why argue? I just marveled at her strange adventure and we laughed about it.

[Wingus Dingus]

69. That's about all you can do--accept what they believe but try to reassure

them the situation is OK so they're not frightened or worried. My grandfather had some pretty nutty delusions when he was in a nursing home with dementia, and they were upsetting and made him angry at times. (Many times misconstruing people laughing or talking in the hallways.) My parents visited him often and tried to reassure him, but you can only do so much.

[nitpicker]

75. One problem is when people were trained to "attempt to reorient"

And then get short-term memory loss themselves.

The routine parts such as cooking, cleaning, someone gets down pat.

But the things that change... "Is it Wednesday or Thursday?" Only to ask the same question ten minutes later.

[grantcart]

68. A sobering thread with many thoughtful responses

Hats off to all those who cared for sick relatives.

[NurseJackie]

78. When she was still aware, I knew that my visits would be quickly forgotten...

... within moments of my walking out the door. If I visited in the morning, then went to the cafeteria for lunch... then returned later she was truly surprised to see me. Or... if her children had visited in the morning, and I visited in the afternoon, she'd ask me about them and wonder why they had not visited in so long.

Again, I chose to lie and make an excuse "oh, they've been busy, but I know they'll be visiting today" (and that was all she needed to hear... she'd forget her worry and move on to the next subject.)

She lived moment-by-moment. Lives. She's still alive. But, she's "gone".

It's a nonstop grieving for a prolonged goodbye.

I hope my death is quick.

[bahboo]

81. this is what my Mom is currently like....

my sister and I call it her zen state. She's fun to interact with in this state, it's when she gets agitated or combative (things she NEVER was before) that it gets difficult.

[Blue Owl]

79. K&R

[COL Mustard]

85. Somehow I Thought This Was Going To Be

An instruction manual about how to talk with Trump humpers.

[lostnfound]

86. The beautiful hours of time travel

I was just 20 when my mom and I took my 76 year old father to the beach, dragging a wheelchair through the sand, a feat that seemed too much for us but we did it anyway.
He looked so at peace to be there.
He didn’t make much sense in the present moment but could talk about things that had happened to him back in the 1920s when he was young.
I knew that those scraps of stories were all I’d ever hear from his life that I hadn’t already known.
Old people are precious with their 30,000 plus days of life.
I don’t like the barriers of time much anyway.

[Maru Kitteh]

88. I wish I could rec this about a hundred thousand times, I really do. nt

[NurseJackie]

101. Thanks.

That's why I felt compelled to share it with everyone. I'm surprised to see how many stories and shared experiences are similar.

[KentuckyWoman]

89. I appreciated the moment when it was my grandma....

Oh he stories I learned about her parents and my mother and kinfolk I never got to know. It answered so much about why my mother was the way she was and really helped me find a peace about it.

Not to mention the antics of Mom and Dad in their early years that I got to toss back at Dad later in life just to get his hackles up.

I learned the history of a somewhat odd looking necklace I found in the attic of a generational family home. I learned all sorts of things. I don't know that we had a word for dementia. My dad said "she's reliving her life before she goes."

She lived with us for 4 years before she passed. And while it was hard to deal with physical deterioration that came with it, and the agitation she had when she got out of sorts, I am grateful I got to share that time with her at the end.

[Texaswitchy]

90. My Mother went back to her early 20's.

She was not married and didn't want to be.

She was having a good time reliving WW2.

She told me a lot me a lot of stuff.

[Skittles]

91. it's what I have always done

and if someone tells you the same story over again, don't say you've heard it - listen to it again and ask different questions about it.......it's a good memory for them

[MerryBlooms]

94. Both my sister, who I live with and care for,

And a client who I care for, are in early stage. Some days are so exhausting. Both are hard of hearing, won't wear their hearing aids... I spend all day day, day after day, yelling the same conversations with my client. I have a friend who now lives with us to be here when I'm not. But I'm still in charge of medicine management, meals, shopping, pharmacy, house management, finances... I am currently taking state required classes. I find myself laughing and crying at the same time.

I came home tonight and just wanted to curl into a ball in my bed. I didn't. I'm talking to family about Thanksgiving, feeding our feral fire kitties, baby raccoons, and getting supper on. Day after day.

Thanks for the article. It's what we do all day long. We make sure we're in their world, it's the only option for anyone who loves their people.

Eta: I also have 1 more client in wheelchair, but he doesn't fall under your topic.

[BunnyMcGee]

96. My older brother passed from FTD

near the end I played Youtube songs like Elvis 'Blue Hawaii', since was stationed there, and whatever song I remembered He played from vinyl records. Music, I think, was his pleasure.

[usedtobedemgurl]

100. I Feel I Have A Preview of What This Is Like...

since my car accident over the summer. I have a concussion. I am foggy most of the time. I can hardly remember anything. I forgot my dog's names a couple of weeks ago. I had to ask my boyfriend of seven years how to spell his last name. I will be in the middle of a sentence, not even interrupted, and I will not remember what I was just talking about. I know it is a different set of circumstances, but I can truly grasp how sad and frustrating it must be to be the person going through all of that. At a certain stage they will not know they are going through it, but while they do, I totally get what it is like.