Introductions: Are you caring for someone with dementia?

@billchitwood I had a flashback while reading your post! Made me remember how many times in a day I would hear my wife call "Scott...Scott...Scott...Scott...Scott... and on and on! She, too, was the most comfortable when I was within eyesight and just sitting with her. I came across the painting in this picture at our local coffeehouse, where they used to feature local artists' works. Purple is my favorite color and the eye made me think of how, as her caregiver, my wife always had her eye on me! I even had to always leave the bathroom door ajar. (TMI?)

I also had forgotten how many times my wife's tastebuds changed. Frequently when would make food related announcements, usually after I had cooked the meal, that she suddenly no longer would eat tomatoes, or cheese, or garlic, or... For over five years we ate exactly the same meals every day. One breakfast, one "Linner". Linner was always white rice, boiled chicken, and mixed vegetables. The good news was she did eat!

The days DO get long, don't they! I hope; the sun is shining on your neck of the woods today!

Strength, Courage, & Peace

Hello. My husband has been referred for a PET scan and to a geriatric psychiatrist after a diagnosis of fronto-temporal dementia. He first had a neuro-psych evaluation last fall which indicated severe short-term memory problems and neurological "spillover" . So, then he was referred to a neurologist who after extensive testing gave us the diagnosis of FTD and has put in an order for a PET scan and referred us to the geriatric psychiatrist who is part of a "Mood and Memory Clinic". It will be at least a year before we get in with the geriatric psychiatrist---they are so backlogged. It's so frustrating! The PET scan, according to the neurologist, is a functional MRI---- it shows exactly how the brain is working. It shows electrical activity throughout the brain. We are waiting for our insurance to approve this test. It is very expensive and the neurologist warned us that some insurances balk at covering it. Everything is overwhelming to me right now. My husband almost seems to be in denial about everything. Either that, or he just can't understand. If I try to talk about the reality of our situation he gets angry at me. He has always been a very smart man. He has a doctorate degree and has taught psychology at a college. He also had a successful private practice counseling service for many years. He retired from that last year. Now his thoughts are very disorganized although he still has his "smarts" . It's hard to follow his train of thought. Some days he seems like his old usual self which makes things even harder because day to day life is unpredictable.

Hi @snowbloom I know every patient and their disease is different, but I know my wife never wanted me to talk about her situation. It was OK when she would bring it up, but not me. I know for her she felt her disease was a burden for me, she hated me 'reminding' her of her mortality, etc. When it came to doing certain things (like rewriting our wills, POAs, etc.) I made sure I bought it up as something I wanted to do and not because of her situation. I can't remember how many times I'd begin a talk with "I read something in the newspaper today that made me think of...." and then made sure I suggested we, both, do what needed to be done.

You are right, the unpredictability is tough! I remember my wife's neuro doctor telling me "we really don't know all that much about the brain, and when it is 'broken' we know even less."

Strength, Courage, & Peace

Bill does a blog - problem is his command of the computer, while never that great, is almost non existent at this point. When I try to help him I can't figure out what he is talking about and he can't explain so gets angry that I can't help him. This morning he was confusing Microsoft Edge with his Word program - then confusing his Word program with his blog site. When I tried to explain the difference he just got really upset with me and said I didn't know what I was talking about. Which could be true as I was having a terrible time trying to figure out what he was talking about! And I don't use Word or Microsoft Edge so not that familiar with them. He blames his Dell computer. Won't believe it isn't the computer's fault. Wants me to call Dell and demand they fix it or better yet send a new computer - but to be sure I rake them over the coals. I'm not good at yelling at people, especially when they haven't done anything wrong. I keep trying to distract him. Not working today. No golf on the TV that he wants to watch.

Terrific story that made me smile when I looked at the painting. Thanks for sharing this.

Good morning @billchitwood Ahhh, those times of what I called "daily dramas". In my wife's situation there always seemed to be something wrong that I simply didn't understand or worse, didn't want to. I recall the point she could no longer tell AM from PM on the clock and I would find her calling folks on the phone at 2, 3, or 4 am. I slowly "disappeared" a bunch of our clocks and bought a couple cheap military-time clocks. That solved that problem!

There were also many times I would fake phone calls when she insisted on certain things that were inappropriate. I'd rail away and then explain how I gave them what for and often that ended that concern.

The computer must be a tough issue. My wife had no interest in computers so I was lucky on that front. Hopefully, there will be some golf on TV today for Bill.

Strength, Courage, & Peace

I love the idea of the fake call! I also noticed he is having problems with time - could be his eyesight however. He has the 3 month check up next week for his CKD. He turns 89 tomorrow. A Tennessee boy who fell in love with AZ. His sister had dementia and died about 12 years ago - she was a year older than Bill.

Hi @snowbloom, my thoughts are with you. My husband was diagnosed with Alzheimer's in 2019, but I knew something was amiss at least two years before that. He had always been very articulate, but he stopped knowing the right words to use in conversation. Prior to diagnosis, he had an MRI that showed changes in his frontal lobe and neuropsychological testing. He was a driven, type A, sales type when younger, competitive and sometimes difficult. Now he is easygoing and gentle and has handed all responsibilities over to me. He broke his hip about two months ago, was out of our house for a month, first in the hospital, then rehab. The physical therapists are pleased with the progress he's making at home. It's challenging to explain to him why he has to do his leg exercises every day. I have some serious medical conditions myself, but I am the one he depends on so I have to stay strong and be there for him. I try to keep terror of what the future holds at bay.
Are you responsible for everything in your household at this point? I resisted that for a long time, but knew it had to be done.
I'm wondering what help the PET scan will be in your situation. Are there treatments that can result from the findings? My husband was on donepezil for a while, but we discontinued it, when there were no more benefits. Now he is on a low dose antidepressant, Citalopram, which relieves some of his anxiety. I think he would spend the whole day in bed if I let him. Wishing you the best, Teri

Scott,
I'm looking for some advice. My beautiful wife of 53 years has progressed from MCI to dementia per our last meeting with the neurologist. The advice I’m looking for has to do with our future. Based on your experience, how can I plan for the changes in front of us. I’m not looking for financial advice but what changes should I make to our one story house? I’ve had the doors to the master bedroom & master bath changed to accommodate a wheelchair. I’ve replaced the gas stove with an electric stove. I have alarms on the doors to let me know if anyone leaves or enters the house.
Can you think of anything else I should be looking on changing?

My mother and my wife’s mother both ended up in (an expensive ) nursing homes and because of those experiences, neither one of us wants to go that route. When you go into a nursing home, you lose you independence, privacy and most embarrassing of all, control over your life. I will do anything & everything to keep my wife from going into a nursing home. In our area, nursing homes are charging 14-15 thousand dollars a month, so if I can do anything to keep my wife home and it costs less than a nursing home, then we are ahead of the game.

Thanks for any advice.
Dan

Hi @tunared Thanks for reaching out on this important aspect of caregiving. I am sure others will have ideas and I will continue to think about the changes I made., but I wanted to get back to you quickly to let you know I'm thinking about this.

We, too, have a one-story house. My wife was able to be home for her entire journey, although I fully know that is not possible for all. Her last 14 months were in home hospice, which was a godsend. Here are the adjustments I made that I recall first. I removed all throw rugs. I rearranged our bedroom by pushing our bed against a wall and made room for a hospital bed, even though we didn't need it right away. Our bathroom was full of ssues I never fully resolved. Our shower was a step-in and even its tiny ledge became too big a barrier. Likewise I had to remove and replace the edge piece between our bedroom carpet and the bathroom tile because it was a tiny bit higher than either and it caught her toes, then the wheels on her chair. I added grab bars on either side of the toilet. Perhaps most importantly I bought some of those adhesive stickers for tubs and showers and put them on our bathroom floor to help with slipping, but tended to not cause tripping. I bought a supply of the cheapest washcloths I could find so when they became too stained, I could toss them. I also bought some thin towels for post-bathing so the drying cycle for them was quicker than with our old, heavy towels.

Not sure of your setup, but we have two steps from the house to the garage so I found a wheelchair ramp I could put there. My wife became quite scared when I would lower her down the stairs without it, so I was happy this helped her relax and be more open to going out to our driveway and/or garage for some fresh air.

As silly as this probably sounds, I laid in a big supply of my favorite 'cheat snack'. For me that is peanut butter filled pretzels. I found having those on hand offered me the chance to easily treat myself on those inevitable extra difficult days.

Not financial, but we also attended to the necessary legal papers. POA, medical POA, estate/wills, advance directives, and (I don't know if you have adult children or not) but included our adult children and all of my wife's specialists on her HIPPA forms so I didn't always need to be the informational hub.

I'll keep thinking!

Strength, Courage, & Peace