The hard part is over.
I'm matching you with one of our specialists who will be calling you in the next few minutes.
Everything you mentioned is exactly what I went through with my mom. That is classic dementia, especially in the beginning. The delusions, forgetfulness, repetition, obsessive/compulsive behavior, toxic behavior, especially towards you, and it feels so personal and hurtful. Eventually, I came to realize that she was probably feeling so frightened and confused, and perhaps I, being safe for her, was a safe outlet for her to vent on, even if she wasn’t doing it consciously. That didn’t make it any easier when it was happening, really only in retrospect later. I had to keep telling myself, it’s not her, it’s the disease… it’s the disease… it’s the disease. (while taking 1000 deap breaths!)
I am assuming that you have ruled out other medical conditions like a stroke, urinary tract infection, or other medical condition and that you do suspect Alzheimer’s or some other form of dementia. If so...
Your dad will exhibit signs of multiple stages, sometimes simultaneously, and sometimes he will go back-and-forth. Sometimes he may progress to another stage, and sometimes go back to another stage for a while, and so on.
It will be helpful to learn the signs of all the stages and then recognize the symptoms and learn to deal with all of them. It’s a very difficult journey and I feel for you. There will be very very hard days (hours, minutes), and there will be easier days, and there will be times that you might have weeks and even months at very difficult stages and then, at least with my mom, there might be times that he goes back to an “easier stage” for weeks or even months.
With my mom, none of the above seemed to be directly attributable to medication changes or anything we did in terms of her treatment or even the way I tried to manage it or her. It’s just the disease progression, and the mystery of the way it, and the brain, works. It just takes an extraordinary, sometimes seemingly unmanageable, amount of patience and understanding, and continually educating yourself.
This forum offers a wealth of support. A lot of times when I thought I must be the only person on the planet dealing with the things I was dealing with, it was very helpful to find not only some answers, but simply that other people were dealing with the same things.
Good luck, stay strong and take care of yourself! ❤️
Toxic? Lies? Making up stories? This, unfortunately, is part of dementia. The stories, you think he is making up, are very real to him. This is how his brain is working, or not working. His brain is broken and he is unable to remember what the truth is, he is delusional. Those with dementia also have intense paranoia so that will cause delusions.
You need to be able to be in his world. Don't argue or try to correct his thoughts. That will only cause agitation, which can become extreme.
I also know of new methods that are available to improve your fathers condition. I am not seeking new patients. I am a survivor of 4th stage colon cancer and a coma with a constant 106 degree fever for 4 months. So I had my own issues with memory as well as issues from 7 months of chemotherapy.
You can reach my e mail address my placing my name in a general search. I help anyone in need who ask me for help. I am NOT trolling for patients I am blessed to have had my heart stop and be fortuante to have had my heart and life brought back so I could live with my family!
God Be With You,
Dr. Jack Grenan
I think it might be useful to know if his behavioral symptoms can be helped by meds. I would schedule an appoinment with his PCP and get a referral to a geriatric psychiatrist.
I think you also want to know what level of care he needs at this time. For that, I would contact the local Area Agency on Aging and ask for a needs assessment.
"Just like gems, each person is precious, valuable, and unique, and given the right setting and care, can shine." - Teepa Snow
Thank you so much.
I'm sure you're trying to figure out where he's at in the dementia process and how long this stage will last. While no chart can be a sure-fire answer, this one, I think, has a good timeline for what to expect.
Good luck..........such a terrible thing dementia, I know, my mother has it as well.
If we had a cure for it, rather than simply managing it, I would have forced the issue, kicking and screaming notwithstanding. Sadly, we don’t, yet. 🙏
In my case, my dad and I were too close to her to be the ones to be making the suggestion. We got to be the enemy in that regard. Perhaps your dad has a close trusted friend that could be the one to have the conversation.
In my opinion the 1-7 stage model is good to research for yourself but not very helpful to describe to others.
The early/moderate/late stages are enough for dealing with medical people/hospitals.
A vague early or moderate is usually enough to inform others eg: a dentist appointment or a lunch with distant relatives. Just a 'heads-up' to what to expect really.
But for CARE the best I have seen is Teepa Snow's approach. She calls it *Positive approach to care*.
She really understands that people can move through different levels/stages due to all sort of things (pain, fear, stress, even time of day).
Eg: a *Diamond* (still clear thinking, sharp but cutting words) can become an *Amber* (stuck in an endless loop of thought) under stress.
I'll try to paste a link to follow.
Here they are.
There are so many books about dementia that's it hard to know which ones to recommend. I would suggest Jude Welton's "Can I tell you about dementia: A guide for family, friends and carers" and Lucy Whitman's "People with Dementia Speak Out" and her earlier book, "Telling Tales about Dementia: Experiences of Caring" (all three books published by Jessica Kingsley). The reason I am suggesting these is to stress how different everyone is in how they experience dementia, how they treat their loved ones and carers, and how those loved ones and carers themselves respond to different people with dementia.
You might also find helpful Dr Jennifer Bute, "Dementia from the Inside" (published by SPCK) which suggests: "There are three key principles when it comes to understanding people with dementia. 1) There is always a reason why a person is behaving in a particular way [although I would add, they may not know that reason]; 2) When facts are forgotten, feelings remain; and 3) Familiar patterns of behaviour continue" (p. 64).
I hope you find these suggestions helpful. I am very impressed at how you are responding to each answer. I too have found this forum quite helpful.
With friendship and prayers for a manageable future
But what you describe is typical of a moderate stage of dementia.