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You know, I think in some sense you are right. I think that we do overkill on information these days. I think it isn't necessarily always a help to us. Though I will say that some of us with an illness end knowing MORE than our doctors about it, and that's been proven by me, by Lea, by some others.
l think that we are either comforted by knowing a lot, or discomfited, and that can change on any given day.
I DO think that we need to understand some BASICS. That is to say that the progression of Lewy's varies GREATLY from that of Alzheimer's which varies greatly from Vascular and FTD. Some dementias can change better to worse day to day (early Lewy's), some progress down in stairsteps with a level between steps, some are an certain downward slide.
My brother said to me of his probable early Lewy's dementia, which we researched together "I am not glad to know what I have and where it will take me if I am forced to live long (he wasn't); but I AM glad to know why I see the world so differently, and that the hallucinations in my brain are the disease, not me".
We are all different. Some of us more anxious and need to know, some willing to accept that this day will bring what this day will bring.
I would say do it your way.
I will say that I love memoir and that is for anything. Lealonnie just recommended today a book by a sufferer of Alzheimer's about his journey, finished, she thinks, by his wife. THAT is for ME. I bought it that second.
I am curious by nature. Much more a book person than a people person.
Glad to hear your perspective. We vary. It's healthy to know that people may choose to do it their way, not ours. As to judgement, we judge everything; it's human nature; we have to make a judgement before we cross the street and we make them all day long if you think on it. As to others' judgements of us, who really cares? That's THEIR problem.
But I read 3 books and read numerous articles on line . It was almost zero help with my mother and FIL who both had vascular dementia . I felt that the majority written was helpful with Alzheimer’s patients . My LO were Teflon against Teepa Snow , it was laughable , none of her techniques worked , again because it’s geared more towards Alzheimer’s .
I had a stubborn mother who was a lifelong manipulative narcissist , and a very stubborn , entitled , spoiled and at times manipulative FIL .
It wasn’t until much later on did any therapeutic lies start working , because their memories weren’t that bad . They could not understand how to do things or why things had to be done , like showering and changing their incontinence brief . Insisted they weren’t wet and did not need a shower . My mother at least recognized her physical decline . FIL who could barely walk , kept insisting we take him places including a cruise . No way , he was too uncooperative with hygiene and incontinence care .
Everyone’s experience is different . The whole situation is a s4it show . Do what you find best to survive it . Don’t put guilt trips on yourself for not “ educating yourself “ more . Very little is known anyway . The information changes .
But I feel that you already have that compassion towards your husband.
And I feel like I've learned all I need at this point also.
I get it, no judgement here, you know as I do the information is there , if or when it's needed
Even being armed with knowledge, the journey was still so very stressful.
You know your husband.
You know how he "ticks" the fact that he is not "ticking" like he used to is something that you will get to know.
I called some of the things "Quirks" and when my Husband did something odd I just learned to go with the flow.
What is helpful is to know some of the declines and how to anticipate what comes next.
The other thing that is difficult to get is that you can no longer expect "normal" and that often what he does or does not do is the broken brain not him.
You learn to walk away
Redirect. But while you are redirecting if possible validate what can't be done.
Learn to laugh. I found several times when things just were not going the way I wanted and I cold not redirect him I just started to laugh. (a real laugh not just a haha laugh) I was surprised when he looked at me and he started laughing also and I was able to get his focus off what he wanted and I could then redirect him.
And this might be early on for you but...
As soon as he might qualify for Hospice get him on Hospice. You will get so much help, guidance and support. As well as a Nurse that will come each week. The nurse will order medical supplies and equipment. (that all gets delivered)
A CNA that will come 2 times a week to give him a bath or shower and order all the personal supplies. Briefs, wipes, gloves, creams, ointments, bed pads. All delivered to you. AND this is all covered by Medicare, Medicaid.
And Hospice also will cover about 1 week of Respite each year (I have read here some got respite more often than that)
Also if your husband is a Veteran please check to see if he qualifies for any benefits from the VA . Contact your local Veterans Assistance Commission or
your State's Department of Veterans Affairs. The VA now also pays spouses to be caregivers.
For example - my grandmother began SHADOWING my mom - to the extreme. It was a major leap because it seemed to come out of nowhere. It's one of those things that it's good to kind of understand the basics so that YOU as the caregiver aren't caught off guard.
Therapeutic lies, dealing with hallucinations and delusions, how to handle questions about people who are no longer living, how to get them to stop driving or what to say to get help from social workers. Those are all helpful things to have in your back pocket. But you don't have to get a PhD in dementia to manage the basics enough to protect yourself.
My husband has Parkinson’s, no dementia. It is possible he can get it but quite unlikely.
I am well aware of few facts and I won’t be able to handle that. That I know for sure.
It was very depressing very early on. We had people go on and on about how Mom would eventually have extreme anger and rage. We had none of that. We also were told Mom
would wipe feces on the walls. We had none of that.
I never read any of the books.
As specific issues came up I researched that issue and how to handle. This strategy worked well for me. I think reading the books would have been totally depressing as a family member.
I am the type of person who researches and reads obsessively to channel my anxiety and to achieve a sense of control. But deep down I know the control is an illusion. Dementia is worse on the caregivers than on the patient in my opinion.
Through reading I did become convinced that he needed to be diagnosed and got that to happen. That was useful.
my mom (who was my dad’s hands-on caregiver) never did any research or reading. When his behavioral symptoms got worse she would ask the dr if she could increase his meds. They generally said yes.
Or often she would say to me “now he’s doing XYZ, could that be a symptom?”
best wishes
Whether I do extensive research or play it by ear or something in between, mostly depends upon my personality and how my brain learns.
It’s a ‘style’ thing rather than a ‘substance’ thing.
Diagnosis is key. Once I have that, I can narrow down the volume of information, and learning the basics won’t take so much time or feel quite so overwhelming. Maybe then I will be able to fit some of the ‘whys’ in amongst the ‘Oh No’s’.
If I’m concerned about unfair judgement (and I am), I can rest assured it won’t be coming from any of you generous souls! It’s likely to come from distant family members who have not been around to see the decline. I think (I hope) I will be able to respond with understanding to their shock at seeing my husband like this, rather than with anger at their judgement of my caregiving.
It’s incredibly helpful to hear bits and pieces of your journeys (or ordeals : )
I do think they are more helpful to me than any book.
Understanding the Dementia Experience by Jennifer Ghent-Fuller
https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience
The author uses plain English and hones in on all of the biggest issues we run into while dealing with dementia. Its a great article, easy to read and helped me immensely.
Once I understood my mother was regressing in time back to being a young girl again, all of her issues and conversations made sense! She was 17 again, I was her mother, and she wanted to go home and see her siblings.
The rest of the chaos I played by ear, because she changed like the tides. Meaning I had to keep changing MY stories to fit her mood du jour. Nobody can "educate" you on what their moods are going to be! But when you understand a bit of where they're at in their regression, it does help.
Don't worry about the "should bes" and "would bes". Just love your husband thru his life and that's all anyone can and should expect of you. There are no real "experts" on dementia imo anyway. We learn more from one another than anywhere else.
Good luck and Godspeed my friend.
Thank you for the sweet advice - I’m sad to say I need to be reminded more often lately.
I've read quite a bit, both books and on-line. I get it. I do.
I just don't think I can possibly deal with 18-20 years of this. We are coming to the end of year four and, once again, I'm DREADING tomorrow's visit.
God help us all.