In your personal opinion, how would you describe the complexity of dementia to others who aren’t familiar with it?
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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Dont dwell on the past, just try to help them now that you know.
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.
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.
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
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.
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.
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 .
Understanding the Dementia Experience
Jennifer Ghent-Fuller
2015
www.smashwords.com/books/view/210580
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.
That's about as simple as I can make stuff right now.
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.
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.
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
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.
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.
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.
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.
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.
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.
* 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
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.
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.
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.