Hope or Cope?
We finally got an "official" diagnosis on Monday - "amnestic MCI with concern for Alzheimer's." DH's next steps are a PET Scan, bloodwork, and another MRI.
Now, I just keep swaying between hope for a "cure" (improvement) and acceptance of the diagnosis. Do we fight the disease or do we learn how to live with it?
I vacillate between Dean Ornish and Teepa Snow, or Dale Bredesen and Tam Cummings… do we try the MIND diet, or KETO Flex… if you've been obsessed with research like I have, you know exactly what I'm talking about.
As I'm wavering between mindsets, is this just a normal pendulum swing of emotions, as we adjust, or is it a wrecking ball (waste of our time) trying to find ways to improve DH's cognition? Have any of you had any luck finding a way to improve your PWD's cognition, or is it best to focus on strategies to manage (and maybe enjoy) the time we have left together?
We've done so many of the things recommended… we have a will, POA, DPOA, advanced directives, etc. I've read "The 36-Hour Day" two times already, watched hundreds of Teepa Snow videos, and obsessively read what feels like a zillion posts on ALZConnected.
Someone on here said learning about Alzheimer's was like drinking from a firehose… that's how it feels for sure… extreme pressure and overwhelming volume.
What do you think? Where is my time best spent… hope or cope?
Comments
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You need to Cope. Hope is not a strategy.
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I would focus on managing and enjoying the time you have together. We all hope for a cure for this terrible disease, but meanwhile you must learn how to care for your LO and cope with the day to day challenges and gut punches as new behaviors surface their ugly heads. Develop a plan for when he needs 24/7 care and then have a Plan B. I asked my DH’s Neurologist about diet, supplements, etc. she said don’t waste your time. 💜
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I could have written your post. When we got the diagnosis of MCI, we spent a month getting financials in order and planned for the future. This is what appears to be working for us and keeping my husband stable: Brain HQ online games. They help build new connections in the brain. We were trained on these games through the Mayo Clinic HABIT Program. If you have The HABIT Program available where you live, I highly recommend it. I have read up on Dr. Dean Ornish’s program and diet. We are incorporating it into our life and eat a plant based diet. We are eating foods that break through the brain barrier and make new connections in the brain, repair cells, and create new cells. We are eating foods that keep the mTOR protein enzyme low and help cells repair. Doing all of this over the last six months has given my husband back lost executive function and focus. Recent brain scans show no evidence of neurodegenerative disease. The MCI is stable. If you had met my husband six months ago, you would have thought he had Alzheimer’s! Do what you know is working to help stop the progression and live your life to the fullest.
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Thank you, SDianeL. Your advice is always so helpful.
Yes, I think making a plan for future care will be our next step (starting in January). Our adult son asked us to visit MC facilities where we live, as well as ones close to our adult children, so that we could share our preferences with them. He wants to know what our wishes are for the future, in case something should change and it's our kids who are the ones taking the next steps. I like that they want to be involved, and that they plan to honor what we want should the need arise.
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Thank you, Michele P. I appreciate you sharing your experience.
I have looked into the Mayo Clinic's HABIT program. It appears to be provided in only three of their locations, none of which are close to where we live. I considered trying to sign us up for the one in Florida, and making it a warm-weather getaway. But, DH is not interested in traveling that far. He said he would consider the program if it were near us. Do they do it online like they did during Covid? Maybe I will email them and ask.
I have the BrainHQ app and I love it. I don't subscribe to it, but I get one free game a day. DH tried it and only experienced frustration, which turned to mild anger (at the app, not at me), so I dropped it. At least maybe I will benefit from using it myself. I have found that my brain is getting a healthy workout these days, especially having to remember everything for myself and nearly everything for DH, as well.
January is always a good time to start eating better and focusing on health, so I am going to try to incorporate some of the Ornish plan into our lives. Even if it doesn't improve DH's cognition, it could be good for me to take better care of myself in this way. We will see how that goes.
You are right about living life to the fullest. That needs to be our number one focus right now, while DH is still mostly himself. Why don't we listen to that advice when we are young and have the energy for it? LOL! Instead, I spent too many days stressing out over things that don't even matter now. Ah well, one day at a time, right?
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I think I needed to hear this… thank you!
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I think everything in moderation. Do what you can with diet, memory games etc., but keep your expectations low. Dont let an extreme treatment regiment interfere with enjoyment of the time you have with him. If he begins to protest the supplements and diet whatever, I would recommend you just let it go. Dementia will progress, as others have said it’s best to prepare for what is to come.
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Sound advice, thank you!
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I like this approach. If PWD is the type who enjoys exercise, the challenge of brain exercises, is agreeable with diet changes, then forge ahead. I would be hesitant to pursue these things if they come at the expense of today's quality of life.
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I suggest hoping for a great day and coping with a bad one.
Coping means to learn everything you possibly on how to make the best of tough days. A lot will depend on your behavior so read about valadation (Naomi Feil), watch and read Teepa and get a copy of I'm Still Here by John Zeisel.
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Thank you for this! I am currently listening to an audiobook called Creative Care by Anne Basting. Once I've finished that, I will read or listen to I'm Still Here.
I also plan to watch some of the videos about validation by Naomi Feil. I appreciate your suggestions!
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Full disclosure… I feel like I'm cramming for a college exam. 😁 But, I know every minute of learning all I can will help me be a better care partner for my DH, and help me prepare for the worst.
I guess I just answered my own question… Hope for the best, but prepare for the worst. 💜
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I know how you are feeling; I was exactly the same way . When my DH was diagnosed ( and he was very angry, accusatory and all around disgruntled) we did many of the diet recommendations, brain therapy, increased socialization, exercising, short travel trips. Progression continued. We do continue to do aroma therapy because I feel like it helps calm me and my DH enjoys it as well. ( essential oil diffusers) we finally stopped all of the brain activities, games when he became frustrated and less tolerant of participation. We no longer do public activities /events because of his behaviors I can no longer redirect in public . I have a care companion that comes one time per week so I can get a break and he attends a drop in program 2x per month for a few hours and I get a break then as well. It is very isolating but I feel like I have given the beginning stages/years all I had and now we just take car rides, drive thru treats and watch tv and occasionally do in home exercises ( I have a ball we throw back and forth and sometimes kick back and forth ). I continue to devour on line information and study the DBAT endlessly . “We” are towards the end of stage 6. I am tired but I get energy from this forum to make it thru day to day
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So I didn’t mean to be cold with my answer, and it was late, and I’d had yet another wonderful day as my wife’s sole caregiver. But honestly, there is so much misinformation out there regarding what helps, cures, etc. And once it takes off you will grow tired of people saying ‘I’ve heard almonds help or mashed potatoes or whatever’. There is nothing that will ‘make it better’ and I mean nothing! And drugs like aricept and nemenda used to slow it haven’t been proven to slow it. The most terrible thing about this disease is its deception. You get the diagnosis you feel bad and then a year later you wake up and you’re dressing your spouse and thinking how did we get here. And then it gets worse month after month and year after year. It is a hideous disease. Have as much fun now while you can is my advice.
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Call me Gram…
Ann Basting…i have always been a believer that the creative soul is always inside out loved ones I had never heard of Ann. Perhapy she is the new wave of care.
Thank you!
https://www.tedmed.com/talk/how-to-meaningfully-reconnect-with-those-who-have-dementia/
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Persevere,
You were not cold at all. I appreciate your candor… and I do wish mashed potatoes were the answer… yum! 😉
We are all in this together - please always be frank with me because that's exactly what I need. I tend to be a person who sugarcoats things, but that is not helpful in this situation at all. I need to face this monster of a disease head-on and know what I'm in for.
Thanks,
Gram
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Jgirl57,
Thank you for sharing your experience. It's helpful to have some idea of what to expect, although I know all cases are different. I think it was Emma Heming-Willis' book where I read the quote, "If you've seen one person with dementia, you've seen one person with dementia." (Based on the DBAT staging tool, I think "we" are in mid-to-late stage 4.)
I have been looking into aromatherapy. I am sure it would help to calm me, even if it doesn't help DH. Ultrasonic? Reed diffusers? Any suggestions? My sister uses a spray at bedtime, spraying it directly onto her pillowcase.
Gram
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jfkoc, I hadn't seen that Ted Talk. Thank you!!!
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Gram, I use the reed diffusers because I like them . I use citrus in the kitchen, rosemary in the living room and dining room and lavender in the bedroom and bathroom. Can’t hurt and Lane S often shares articles about aromatherapy benefits. I think for all of us caregivers, we need to do whatever we can to preserve our own health.
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Thank you!
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I have been where you are as SO many of us have. When I first came to this site it overwhelmed me. What was happening to others was NOT going to happen to me. I would research like mad and my determination would stop my husband from progressing out of MCI. Well, guess what. Nothing stops the progression. The thing is, its pace of progression varies from person to person. We had great days, weeks and even months, where I thought “maybe they were wrong.” But then he would do or say something that brought me back to reality. My husband did quite well for about 5-6 years. There was progression, but not rapid. Now we have picked up speed. No hiding or pretending what’s happening. Now I live one day at a time and being educated by the absolutely wonderful people on this site. This is the best group of experts on this disease, hands down. We live it and breathe it every single day.
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I am going to say something that may seem harsh or unloving and back when my wife was in the earliest stages I would have thought differently but ….now when I am told about the latest so and so that is suppose to slow down or stop in place this disease; there is always a thought that goes through my mind. Why would I prolong this process? Why would I ask her to go through this for a longer period or repeat stage 4, for example. Why would I wish that for myself; I don't. I always have a pang of guilt, a sense of "how selfish" but I wouldn't wish this journey on anyone and short of an actual cure I feel that our journey is best on it's one way path. It makes me cry but it is my sad truth.
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Thank you, Goodlife2025. These are things I needed to hear, and exactly why I put this out there.
I've been feeling a sense of panic when I think I might be failing DH… not making enough veggies with dinner, allowing too much TV time, not encouraging more exercise and brain training, not advocating well enough for him, and not believing hard enough for a miracle. I beat myself up thinking that I should have pushed the neurologists harder, I should have noticed the changes sooner, I should being doing a better job at being his care partner… 😕
But there is no doubt that the writing is on the wall, there is no doubt where we are headed. I have times when I think that maybe, just maybe, we can stop or delay the progression, and then like trottingalong said,"he would do or say something that brought me back to reality." DH is not only forgetting recent events, but he is already beginning to forget some of his own personal history… extended family, prior career details, etc.
I don't think I can stay in denial any longer. Perhaps my hope is better directed at hope for a good day, hope for the strength to face what's to come, hope for peace for DH, and hope for moments of joy and connection while he's still here.
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The topics discussed on this site are so difficult and I very much appreciate the eclectic views expressed here. I share, we all share at one time or another your moments of doubts and wondering if we are enough. BUT we are, we all are doing our best and that is enough for this day. Sleep well everyone.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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