Hi Linda,
I’m Edd. My diagnosis is just a generalized “Alzheimer’s,” which I’m told is the worst kind. Frankly, it’s an awful diagnosis that is progressively debilitating, currently not curable and fatal in the end. That’s the bad news but the good news is that all else is good.
What I mean here is when you get a diagnosis like this the quality of life you experience thereafter is all about attitude. I know, it’s easier said then done but I’m a 69 year old man who is a full three years into his original diagnosis and I’m here to tell you that it can be done.
Here is what I do. First I maximize my cognitive abilities with mental exercises and healthy supplements. Cognition is the key. Keep as much of it as you can for as long as you can. Accept that you can’t get back cognition that you already lost so don’t dwell on it. We can’t get back our youthful good looks and vigor either. Do we dwell on that and feel sorry for ourselves because we are older or do we instead feel gratitude for first having been able to grow old (many don’t) and instead concentrate and “senior only benefits.” First, I don’t know about you but I find Beira grandparent is much more fun then being a parent was. For me that’s a big benefit that I both recognize and appreciate. Second, as awful as a dementia diagnosis is having an early diagnosis allows you to still participate and plan for the eventual inevitable. For me that was getting my personal affairs in order while I was still able to do so (i.e., wills, general and medical power of attorney, ensuring which trusted healthy family member you wanted to put on your bank accounts to manage your affairs when you’re no long able to, etc., and to just let loved ones and friends know your desires and wishes for when you progress, how you want to be cared for, and generally tending to those final important matters. That proved to be highly beneficial to my loved ones. It also gave me peace of mind. Less worry meant less stress.
Next I started to refine my “bucket list” and decide what was really important for me to do in the short term and what was within my means to do. Then I set about doing it. That has been a whole lot of fun and brought me a pot of happiness. I made a point of rediscovering my sense of humor. I spend more time laughing and making others laugh then I ever have before. I’m not talking about learning jokes and becoming an amateur comedian either. I’m talking about “witt” and deliberately looking for the funny things that happen in everyday life, especially with kids and animals, and tell others about what you witnessed and experienced. If you see or hear a funny story share that to. It will make others interesting and laugh with you (everyone enjoys such things) and it takes their minds and yours off a condition that nobody can do anything about including you.
Keep your mind active. Their is great truth in the saying “use it or lose it.” Read, write, do puzzles, play crossword puzzles, if you are in the least technical their are loads of cognitive mind games you can download to exercise your mind. Also feed your brain. My neurologist, in addition to prescribing me doneprizol for my Alzheimer’s, also recommend that I take Bacopa, Ashwanda, and Coconut Oil natural supplements which I regularly buy on Amazon.com. They are all reasonably priced and affordable but over time they do wonders. These are natural remedies known to help with cognition. I have pretty much stabilized my lrogreidoing this for the last three years. No, it’s not a cure. But it does maximize what ever cognition you have in each stage of your dementia progression thus increasing your productive time. A clearer mind help you remember more and keeps you independent for a much longer time. That’s great for you and is a blessing for your care givers who won’t have to be strained with your “intense care” for nearly as long.
In short Linda, I have taken as much more time to count my blessings then I have to focus on my dementia. When I do focus on my dementos I try very hard to even make that productive “prepetation and planning” time as opposed to the always depressing and sad “feeling sorry for myself” time. The latter has zero benefits and only detriments.
What has all this done for me? Well that’s simple. It has allowed me to have dementia and be happy at the same time. It’s also allowed me to make loved ones happier instead of being so demoralized, sad, and depressed about my condition. If you’re happy, really that’s what matters most.
If you start to get down remember that you’re not alone and certainly not the only person afflicted with dementia. You have the company of millions worldwide with the same desease so never think, “Why me, why me?” Should it be someone else instead of you? Would you rather have terminal cancer, heart desease, or some other incurable disease? God didn’t single us out for punishment. No we didn’t do anything wrong and no, we don’t deserve dementia anymore then someone else deserves cancer, heart cease, cystic fibrosis, or to be killed in a car or airplane crash, etc., etc. This is life. None of us can cheat life. Sooner or later we all have to die of something. THAT IS THE CIRCLE OF LIFE. Accept your faith. Count your blessings, Pray for a cure. Do what you personally can to take care of yourself and delay your progression/cognitive decline for as long as you can and spend the rest of your time in a positive frame of mind and enjoy your life for as much and as long as you can.
Remember, some people who keep their stress managed (stress being the most significant cause of rapid cognitive deciliter in dementia patients) and do the aforementioned can be functional with dementia for many years.
I hope this helps and I wish you only the best.
EDD