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We can look up the medical explanation of dementia but no one knows exactly what it is truly like unless they have first hand experience of caring for a family member who has been diagnosed with dementia.



Sometimes, we don’t recognize the symptoms of dementia when they first occur. I missed the early signs and felt that my mother was confused, forgetful due to normal aging or that she was simply being contrary. I had so much to learn!



I think it would help others to hear what all of you who experienced caring for a person with dementia.



I think so many of us are afraid of dementia (fear of the unknown) that we steer away from the possibility of a parent having dementia. I was grateful when people on this forum suggested that my mom’s behavior could be stemming from dementia because it opened up the door for me to consider that she was having symptoms of dementia.



My mom did develop dementia along with her Parkinson’s disease. Knowing what I was dealing with helped me to understand her behavior. I also learned how to communicate with her doctor better in order for her to receive the best care.



Some of us may have seen dementia with a grandparent and had a head start on the situation with their parents. I didn’t have this frame of reference in my family. Neither of my grandparents had dementia.



Please share your thoughts.

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NHWM- very hard to explain to someone who has no idea what dementia is. I had no idea what it was until my mother developed Alzheimer's. Years ago, a coworker kinda explained to me that her SIL had dementia and was a little loony and forgetful. And I kinda thought it was funny and cute. Haha. The joke was on me.
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cwillie Apr 2023
All those curmudgeonly but funny, quirky older characters on sit coms have shaped a lot of people's perceptions of aging and dementia.
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There is a good autobiography out there on what it feels like firsthand to suffer from Alzheimer's disease.

Living in the Labyrinth by Diana Friel McGowin.

Living In The Labyrinth is the story of how one woman found the strength and the courage to cope with a devastating disease that has afflicted five million Americans. Far from being an exercise in self-pity or a standard autobiography, this is an unflinching and ultimately uplifting look at a debilitating illness from the inside out. 
 
“Somewhere there is that ever-present reminder list of what I am supposed to do today. But I cannot find it. I attempt to do the laundry and find myself outside, in my backyard, holding soiled clothes. How did I get here? How do I get back?”
 
Only forty-five when she first began to struggle with the memory lapses and disorientation that signal the onset of Alzheimer’s, Diana Friel McGowin has written a courageous, stirring insider’s story of the disease that is now the fourth leading killer of American adults.

Diana’s personal journey through days of darkness and light, fear and hope gives us new insight into a devastating illness and the plight of its victims, complete with a list of early warning signs, medical background, and resources for further information. But Diana’s story goes far beyond a recounting of a terrifying disease. It portrays a marriage struggling to survive, a family hurt beyond words, and a woman whose humor and intelligence triumph over setbacks and loss to show us the best of what being human is. 

“A stunner of a book . . . it takes the reader on a terrifying but enlightening journey.”—San Antonio News Express

“Touching and sometimes angry . . . a poignant insider’s view.”—The Cincinnati Enquirer
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If a LO was diagnosed 2yrs ago with moderately severe dementia, incontinence& needed 24/7 care how could the person improve mentally and physically?
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Grandma1954 Apr 2023
If it is dementia they will not improve.
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I too missed the early signs, my biggest regret…
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Cry4help Apr 2023
Don’t blame yourself. Many of us miss the first signs until something very obvious happens. Mine was finances. Bills unpaid & insurances cancelled.
Dont dwell on the past, just try to help them now that you know.
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What makes it difficult is that there are so many ways that dementia presents it's self.
I have mentioned this before but..I have read that someone with dementia might be able to hide or cover up signs and symptoms for sometimes 10 years before others notice and it becomes difficult if not impossible to hide symptoms any longer.
I have sort of described it like one of those pictures that people did a few years ago. You look at the picture from a distance and it is just a picture but if you look up close it is comprised of many individual images. Sort of like a puzzle. You take an image by itself and it is just that but put it all together and you see the whole picture. All the little things that seemed odd, quirky, a bit off, a missed appointment, getting lost, a missed word. Individually it means nothing but put them all together and you begin to wonder.
The important thing is to advocate for testing. Do not let a doctor ignore or brush off concerns. You know this person better than the doctor that may see him or her 1 or 2 times a year.
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Fawnby Apr 2023
Very good explanation. The hiding and covering up can be masterful. I've had two relatives hiding and covering up for each other! Brother and sister.
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It was the bizarro anxiety that brought me here.

The crazy arguing. We’d go round and round and Mom would be irrational. There was NO convincing her.

I thought that *I* must be the crazy one.

Thank God for this site, and for all of you.
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graygrammie Apr 2023
I think many of us feel like we are the crazy one.
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I didn't think so Gma1954.
My mother was that person 2 years ago, but the catheter, incontinence briefs & 24/7 caregivers are no longer part of the equation. She'll probably never be 100% again but 80% is ok with me
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The problem is that the early signs show up while they're still able to function for the most part.

My mother started asking the same question about once an hour, then it became multiple times an hour.

That was probably the first red flag that we noticed, but to be honest, things started earlier but could be attributed to other things. She became less likely to want to socialize, but we attributed that to her deafness and her inability to make out faces due to macular degeneration.

If I go all the way back to the first symptom that was really "not Mom," it was that she lost her emotions. My mom was a crier when it came to movies, the swelling of the music during the final credits, or laughing until she cried. That all went away, along with her sense of humor. She would still ask me to play silly songs I'd previously played for her on my phone, but she didn't react the same way she did. It was as though she knew something was funny, but she couldn't laugh anymore. When my dad died holding her hand, she just sat there in silence. The old Mom would have been in tears for weeks.

Dementia isn't just "losing your memory." It's so much more -- it's losing yourself.
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betskand Apr 2023
Oh, what a perfect way to put it. My husband showtimes for the doc and for his adored, beloved, can't say or do a wrong thing son. The doc is less fooled, although he doesn't get a complete picture except from me. The son (not my son, a 65-year-old guy) believes that his father does NOT have dementia, calls every night and gets showtimed, has bawled me out because my "negative attitude is discouraging his father from living," (nothing could be less true -- I'm 20 years younger than his father and with all the stress I'm pretty sure I will die before he does), etc. -- because it's still early and while he can't summon up normal emotions anymore, he sure does summon up anger and rudeness (except to the son). And he asks the same questions over and over and over.
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like trying to figure out a movie that begins halfway through
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30 years ago I worked as a caregiver in a Memory care home. The final 5 years of my work life (retired now 8 yrs) was as a caregiver in Assisted Living. I cared for many elders with every stage of dementia. The one thing I know for certain is that people with dementia are like snowflakes...no two are exactly the same.
Todyay, in my retirement, I am my older sister's caregiver. None of my previous experience and knowledge helps me much. Some days she's obviously confused, forgetful, confabulating her head off, and the the next she can seem normal to the extreme - sometimes many days in a row. I begin to suspect she is faking the whole damn thing, but then she will say or do something that proves that theory wrong.
This inconsistency in her behavior and abilities is the most difficult for me. I should be grateful (and I am, eventually) for her good days...but always feel like a fool initially. It is hard to stay grounded in the middle if another person's chaos. The only thing I can imagine being worse than being me (the caregiver of someone with dementia), is being my poor, lovely sister with the broken brain.
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Caregiverstress Apr 2023
Yes. It’s the unpredictability that is so damn exhausting. One day they are off the charts bad and you start saying to yourself “okay, we are here at the MC portion of this journey.” And then the next day they seem fine. You know they are not, but it’s these good days that make you think they are not as bad off as you thought they were. And the cycle continues. This mid-stage in my opinion is the worst. I speak to friends who also have a parent who is in mid stage and we all feel the same way. One of my friends said “I am so ready for the stage when she is just totally out of it consistently so I can really step in and take control”. It sounds awful to want your parent to accelerate into the final stages but I understand what she means. In the mid stage they fight you on everything and it takes its toll. I have had to use my POA or just take things over behind my dad’s back because he refuses to let me help with anything because he doesn’t think he needs it. So I feel like the wizard behind the curtain just waiting to be found out. I am running his life in so many ways and he has no idea and if he finds out all hell will break loose. It’s exhausting.
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You have two different puzzles with missing pieces and you try to put it all together into one picture .

And everyday someone messes up the progress you made on the puzzle and changed up some of the pieces on you and you have to start over again .

The only thing that is the same everyday is some of the phrases that are repeated over and over .
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Great Article “understanding the Dementia Experience” posted on the Alzheimer’s Association site.
Understanding the Dementia Experience
Jennifer Ghent-Fuller
2015
www.smashwords.com/books/view/210580
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It’s difficult for us to see what is going on in the early stages of dementia. I am almost positive that it is very confusing for them too.

The book that Lea mentioned would be fascinating to read. It’s amazing that she decided to share her story with others about her experiences living with dementia.
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None of my grandparents had any sort of dementia, but my brother-in-law's father did and so I heard from my sister what was going on with him, then saw for myself at a wedding and other celebrations when I traveled to my sister's home. That turned out to be just a tiny bit of knowledge I gained though. My father told me that my mom was having memory issues before he died. But, wow, I was not aware of the enormity and complexity of it. I am doing what I can to make dementia a bit more visible through my art and writing. I also sent email stories of things going on between my mom and me to friends. They were funny and sad at the same time.
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I like this quote from James Hillman's "Force of Character and the Lasting Life": "...An older woman may be helpful simply as a figure valued for her character. Like a stone at the bottom of a riverbed, she may do nothing but stay still and hold her ground, but the river has to take her into account and alter its flow because of her. .... When all the elderly are removed to retirement communities the river flows more smoothly back home. No disruptive rocks. Less character, too."
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Slartabart Apr 2023
This was a beautiful characterization and I appreciate the metaphor, Artist’s Daughter. Seems you have artistry flowing in you, as well! I like to think that many of us ARE artists, whether the “medium” is seeing beauty in people, places, things, literature. I am the daughter of an artist. I do not paint or engage in attempts to create “objects of beauty” for sale (rather subjective). What I DO has always been to discern the beauty in human beings, no matter how tiny the spark, and, to nurture it and pull it out to the sun where it might grow! I worked in the helping professions. Mother, the “Artist” apparently never saw the beauty in that! Maybe you do! Anyway, good post. Thanks.
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Forgets stuff. Remembers stuff. Repeats stuff. Confuses stuff. Loses stuff. Messes up stuff. Needs stuff. Poops stuff. Angers stuff. Hoards stuff. Wants to drive stuff.

That's about as simple as I can make stuff right now.
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BurntCaregiver Apr 2023
I hear you, Fawnby. This pretty much describes my mother only she doesn't want to drive. She never liked driving.
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At a late stage there is a general but total blankness in expression. My mother cannot really answer a simple question. She points to a beverage she will drink. She doesn't eat. Occasionally she smiles. Sometimes she can say a few words but that is happening less and less. It is like looking at someone who seems totally lost yet not concerned. Just totally empty of expression.
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There is an excellent movie on Netflix called Still Alice. It really gives the watcher the FEELINGS of a woman with AD. Terrifying !
Slowly discovering that much of what you believe is real, is in fact, not reality. “Mind blown” sort of describes it, except it’s persistent and only worsens with time. I understand how and why Robin Williams took his own life when he knew he had Lewy’s Dementia. It’s an ultimate loss of oneself, and having any control of oneself.
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NeedHelpWithMom Apr 2023
I haven’t seen it yet. Thanks for sharing this.
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Yes, I seen my mothers decline in all phases of her life. She is just a shell of herself now.

I too missed the early signs. Like you I thought she was being forgetful etc.

I wish I could turn back the clock many, many years when the very first signs of decline were appearing. However, I just thought she was being forgetful but no..

Now, I take care of my mom from top to bottom and everything in between. I could place my mom in a facility, I thought about it now that she won't know the diffrence anymore but I KNOW THE DIFFRENCE..

So to all.. being forgetful might be a normal thing for a lot of elderly folks but keep a close eye on that because it might be a sign of mental declining which means dementia and dementia is not anything nice to a loved one and to witness the robbing of who she/he was before dementia.
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I don’t know why you would obsess about missing the early signs of dementia…. It’s not as if we can do anything to stop the progression or even slow it down for more than couple months .
this disease only goes one way.
i’m happy my husband wasn’t told he had dementia … he soon realized something was very wrong … confusion .. forgetting… loss interest socially …. Anger … frustration … loss cognitive executive function.
I think I was in denial for about a year when I tht all those mishaps coincidences…. But I’m happy we missed the early signs and carried on normally … I don’t see any advantage to be aware this diagnosis early on …
there’s no stopping it and there’s no slowing down except not more than maybe months if lucky … there’s no cure so what’s advantage of early diagnosis .. it’ll only depress everyone
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BurntCaregiver Apr 2023
@Helenn

I think there's an advantage for the people the dementia sufferer lives with in knowing early on. This can save a lot of hurt feelings, fights, and anger when the people they live with know that the often abusive behaviors are due to a sickness and the person isn't choosing them.
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I would describe dementia like being on a crowded red-eye flight with an unpleasant, fussy toddler sitting behind you who isn't yours. Yet the toddler is adult-sized and capable of the worst adult behaviors.
This is how I'd describe most dementia cases I've been around.
Sometimes there are a few who just regress back into being toddlers having a good day. They have to be supervised 24 hours a day but they aren't miserable and they just get on with their days.
This is how I'd describe dementia.
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NeedHelpWithMom Apr 2023
They do require total supervision which is an adjustment for them and sometimes stressful for the caregiver.
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To me it seems that the dementia experience is different in almost every patient. Symptoms the same yet different. It is difficult to explain to other people who have no contact or experience with a dementia patient. My mom is 90 yrs old now. She is at stage 4 now, she has good days and bad days. I try to tell others about her but they do not always even comprehend what I am talking about. This is the kind of thing that needs more publicity and the public needs to be more aware and educated about dementia so we can relate better. I feel like most people just want to sweep this under the rug and forget about it until it affects them or a loved one. I hope medical research comes up with something that can help us prevent this, and medical insurance will be more helpful in the future in terms of financing.
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BioMom41 Apr 2023
Very well stated, I too did not fully understand until my Mother became full blown. Having a difficult personality to begin with, signs were there 13 years before I actually had to step in. Then it was a year long fight, the medications had to be given to a caregiver, the state of financial affairs were a complete mess and yet another fuss to attain, the car (oh my) was extremely difficult to convince her driving was not an option at this time.
course meals on wheels were even a challenge to get her to agree to. It has been over a year and has it been a struggle, exceptionally so as I live 650 miles away. Mother refuses to move near me, adamant that she is not moving from her home, she has multiple pets. For now it is working but I have learned, this is a fluid situation. It is important to note, I am an only child, thankfully with a very supportive husband and a wonderful on site caregiver.
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Parkinson’s disease can bring on Lewy Body dementia. I would definitely continue to educate yourself on this. It’s causes memory issues, anger, mental confusion, shaking hands, inability to walk, and in the last two weeks of life there could be a lot of crying and yelling out all the time-in which case they will need to be heavily medicated. Hospice was called in to take over in the last couple of weeks. Towards the end, it was awful for everyone. This is just my experience with someone. All the best in getting early treatment. I think it might prolong life.
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Who are you wanting to explain it to?
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NeedHelpWithMom Apr 2023
Mainly for the people who read this forum. It helped me tremendously to learn more about dementia from others caring for their family members with dementia.

As I mentioned, I missed the early signs of dementia when I was caring for my mom.

My mother had Parkinson’s related dementia. She lived to be 95 years of age.
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Like so many others, I missed the subtle early signs of my mom’s Alzheimer’s. She might forget something here or there, but that wasn’t a big warning sign. However, time confusion was the first major sign that something was amiss. When she lived independently, (about 20 minutes away from us), before I realized there was a problem, I told her I’d call her at 8 in the morning, to pick her up for a doctor’s appointment, but she called me at 8 pm the night before, asking if I was about ready to leave. This happened a few more times, (and then she came to live with us, for 5 years). I even wrote a book about my caregiving role entitled: “My Mother Has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale.” I have a chapter entitled I a.m. confused, because she would get confused about time, all the time. (I actually found the writing aspect in and of itself, therapeutic.) My mom then exhibited other symptoms, including paranoia, delusions and hallucinations, both visual and auditory. I learned that especially when she had the latter, the one voice she really needed to hear, was mine.  I tried to deal with this mind-blowing situation with humor and heart. Although she was diagnosed with Alzheimer’s, it appears she might have had mixed dementia, including vascular dementia and Lewy Bodies dementia, since each form can have different manifestations. Before my mom was diagnosed, the only thing I knew about Alzheimer’s was that it affected memory, but it can be so much more than that. I could write a book…
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Glad you asked this question. My mom is quiet so you think she is “present”. However, my husband helped me by telling me that you never know what part of your mom’s brain is forgetting and remembering so address things that need immediate attention, entertain and love her with stories that give her joy and pray with her when she gets overwhelmed. Mom lives in MC, moved from AL to MC. She chose the AL but does not know she is MC. I have 2 caregivers 7 days 4-5 hours a day, they love her and give her a routine. But when I explain to her friends/family, I just say that loneliness is curable with the right person and since mom’s brain is unpredictable, she has a routine that is familiar even though she doesn’t remember. She is safe and content.
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NeedHelpWithMom Apr 2023
Yes, your mom is safe in memory care. You have peace of mind knowing that she is cared for by professionals around the clock.
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Hello, I have been reading this list for about three years but have never previously posted any responses to the questions. This question prompted me to finally add a response. First, I would like to thank this forum and its member for the tremendous support I received during the last years of my partner's struggle with Lewy Body Dementia. I am eternally grateful for all the help and information I have received on this forum. It is truly helpful to know that you are not alone when facing dementia and to see how others are coping with a difficult situation.
To make a very long story short, I just, at this point, wish to say that Helenn is right. For me, what difference would it have made to know WHEN it started. For others, I understand it could make a difference.
My partner suffered from GI problems for years. We went to over 25 doctors who never suggested early signs of dementia. So many tests medications etc. Looking back, I believe those were early dementia signs. Mind Body connection. Would it have made a difference to know that earlier? I don't think so. We/I would have followed the same path. As Helenn says, knowing she was on the road to dementia or in early stages, would probably have depressed my partner more. There was really nothing we could have done that we didn't do. This question and the answers, have given me some relief from the question that has still lingered with me "why didn't I see it sooner?" It confirms my usual answer which is "it would not have made any difference."
Sorry for the lengthy post but I just wanted to contribute and share with this wonderful forum.
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NeedHelpWithMom Apr 2023
I am so glad that you have been helped by this forum. I was too. I cared for my mom and dad for many years. I wish that I would have found this forum sooner than I did

You make a great point. We all have to decide for ourselves what is right for our circumstances. Thank you for reminding us that each case of dementia is unique.

Wishing you peace as you continue on in your caregiving journey.
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My short answer: books with diagrams, bullet points do help. However, talking to someone on the phone for guidance (see below) will help with the needed emotional support, too.

* People are often in denial - as the reality of this change is excruciatingly difficult, esp for family members.
- Coupled with denial is the lack of education (as) most people are thrown into this situation without any prior warning of what is coming - what is happening. People don't know what to do.

* When a person understands that the brain (chemistry) is changing / has changed, and that the person they have known has changed - and that the person CAN'T HELP IT - then it is a matter of LEARNING a new language ... a new way of communicating ... by trial and error. This includes:

* Non-verbal cues are important: smiling, tone of voice, gentle/light embraces/hugs.

* Never argue, learn 'reflective listening'

Guide people to Teepa Snow ... quoting from her website:

" If you need any assistance, we're here to help. Live Chat available from 9am - 5pm Eastern Time Monday - Friday. Or email us at info@teepasnow.com"

"Teepa’s life mission is to shed a positive light on dementia.

Teepa Snow and the PAC Team share about dementia so that everyone can understand why this is happening and how to support those living with brain change in a more positive and respectful way.

Teepa believes that “Rewiring our own perceptions, attitudes, communication strategies, actions, and responses, provides the shift that promotes change for the others around us.”

and 'quoting from Teepa's website' ...

"Do you have a question or situation that you would like to discuss in more detail with a PAC Consultant?
- We offer phone/Zoom consultations with a Positive Approach to Care certified consultant, who will gather information and explore strategies together with you.
- The first 30 minute consultation is free of charge
- Additional consultations are available for $50 per hour.
- You may set up half-hour increments if needed.
- If you want PAC Skills practice and feedback by the hour with PAC Mentors is available too… 

This is not a crisis hotline, so if your need is immediate and urgent, call 24/7 help lines:

800-272-3900 - Alzheimer's Association

855-476-7600 - Alzheimer's Care Resource Center

866-232-8484 - Alzheimer's Foundation of America

I studied webinars with Teepa for 1-1/2 years. I work with people with various levels and kinds of dementia. I have two full binders for / as reference. And, it is still challenging at times.

- Self-care is critically important.
- Take 1 minute to 1 hour to 1 day to 1 week 'off' is important.

Learning about dementia is a PROCESS requiring self-compassion and patience.

Give a hug to the person caring for a person with dementia. They need it too, along with compassionate understanding.

Gena / Touch Matters
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NeedHelpWithMom Apr 2023
I know that I was in denial about my mom. I can look back and see that there were signs.
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Early signs can be next to impossible to see. We all forget stuff…we all get mixed up from time to time. That being said, look for patterns of forgetfulness and confusion. When you see multiple repeats of these issues is time to get an evaluation from a Dr.

Sadly, dementia is not one of those diseases that you can treat if you catch it early…at least that been my limited experience, so I’m not sure early detection would be of any help, however I guess maybe for some people it might.

With my partner I noticed him acting very insecure about his job. However the company had just been bought out and new people were coming in, so job security was a real issue. Also I noticed a change in his gait…hard to explain, but I could hear a difference in the way he walked. However, we were having new flooring put in…I chalked it up to new flooring, so his walk sounds different. These things were very subtle and hard to trace to “somethings wrong”.

The biggest tell I missed was the fact his mother had dementia. It never occurred to me that could increase the chances of my husband getting it. Family history is not guarantee, but it does increase chances.

People always think of dementia as forgetting stuff. I did too. Then I learned the dementia person can have zero logic, can’t solve problems, can be irritable, withdrawn (they know somethings wrong, but can’t put their finger on it), become hyper emotional, cry a lot, become insecure.

Basically their brain is dying, a few cells at a time. You can label cabinets when they can’t remember where the coffee cups are, however, when they don’t read the label, or don’t recognize the written words “coffee cups” the labels won’t help. Then it becomes they don’t know what “coffee” is or what a “cup” is. Just to add to this, all these things can kind of “ebb and flow”. They can have good days and bad days. I always say “good moments and bad moments” because you never know how long they’ll be good or bad. You really have to zig when they zag and go with the flow.

Also, you cannot argue with a dementia patient. That will only make them feel worse. Remember you have a working brain…they don’t. You don’t need to be right and win an argument…it just doesn’t matter, Theraputic fibbing is called for also. It’s ok to tell them little fibs to get them (and you) through the day. Don’t tell them someone is dead if they think they aren’t. Just say, ‘oh they’ll be by later on’ and change the subject. Trying to convince them someone is dead will only cause them to grieve…who wants to grieve all the time. Yet, the caregivers and family will be in a state of grief…watching their loved one die a bit at a time. It’s a very cruel disease.
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NeedHelpWithMom Apr 2023
I love your posting!

You are extremely intuitive. I find it amazing that you noticed a difference in your husband’s gait.

Yes, the saddest part of this is that there is no cure for dementia. I so hope that one day we will be able to say that there is a cure.

Sure, a lot of research has been done. We have meds for symptoms but what we really want is a cure! Maybe, one day. More research is required.

Thanks so much for sharing your insights on a very complex topic. I’m sure that many people will relate to your experiences.
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I think one thing that can make it difficult to recognize when dementia is coming on is that sometimes the person starts by just becoming “more” of what they already are. My FIL was always an outgoing guy, kind of a big lovable goofball. This very gradually increased to silly preteen-like behavior to inappropriate behavior. He’d always been a “happy wife, happy life” person ( catering to MIL’s whims). As his dementia progressed he became more and more dependent on her and solicitous of her approval. He’d say things like “I’m a good boy” over and over, and not in a joking way.

Of course, at some point it becomes obvious, and some of the other characteristic behaviors appear. He started “aging backwards”. In his mind he was a young married man, and later in the day his wife of 50 years wasn’t his wife but some old lady trying to keep him from going home to his family. Then he was a boy who needed to go home to his mother.

I imagine everyone has a slightly different story. There’s no blood test for it so there’s a lot of uncertainty and also a lot of denial. It’s the fate no one wants.
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NeedHelpWithMom Apr 2023
It’s so interesting how dementia affects people. Aging backwards is such an accurate description.
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