These are my favorite excerpts from my friend Harry Urban’s blog during first half of June 2015 .
June 1, 2015 : Walking down the path of dementia, there is only one way for me to go and that is forward. I can never return to my old life so I keep walking. To me it doesn’t matter where I am at on my walk, I just need to keep going forward. So many worry where they are at in their walk but what does it matter. You can not change the path you are on, you can only adapt to it and try to avoid the bumps. … Pretending doesn’t help because the damage being done is irreversible. So what is the solution, to me it is living every day to its fullest, not worrying about the things I have no control over and be thankful for the things I can still do. …
June 2, 2015 : When you have dementia, it is fun to play I wonder what that does. When I find out, I wonder how I am going to cover it up and hide it from Hazel. I usually have to pull out my Alzheimer’s card that states it is understandable when I do stupid things.
Maybe my Alzheimer’s is reversing and taking me back to my childhood days when that game was one of my favorite. I love taking things apart but I’m not so good anymore with putting them back together. I usually add them to the stack of things to look at later.
You should hear Hazel scream when something breaks and I tell her, I’m on it. I still have a tool belt and love to scare Hazle by putting it on and telling her I’ll be done shortly. Being a caregiver is so much more then caring for someone, it’s putting up with the things that make them happy.
June 3, 2015 exerpt: … In case anyone is wondering, Hazel is working and I have no adult supervision with me today. Jade is even hiding from me today. …
June 4, 2015 excerpt: This past week has been rainy and cloudy and drained most of the motivation in me. I get my strength from being out in the sun and enjoying the outdoors. Weather plays a big role in the moods of someone with dementia and I get lazy and spend more time in that far away place where I feel safe. Isolating myself socially is one of the worst things I can do while living with dementia. …
June 5, 2015 excerpt: The sun is shining and the changes in me are remarkable. It is not because of any medications but purely the difference in my attitude. My attitude dictates what my day is going to be like more then anything else I could do.
June 6, 2015: If you told someone with dementia a thousand times and he still doesn’t understand, then it is not the person with dementia who is the slow learner.
June 7, 2015 : Words, words, and more words drive me crazy. Several people this past week told me that they were rediagnosed with Mild Cognitive Impairment (MCI) and not Alzheimer’s. I said OK, what does that mean? Even though they have been treated for Alzheimer’s the past several years their doctor says, opps you don’t have Alzheimer’s but you have Mild Cognitive Impairment (MCI).
That doesn’t sound bad because Mild is a lot easier to swallow then Alzheimer’s. Although MCI leads to Alzheimer’s, you have to grow into it. Are they now saying, once again, that Alzheimer’s is a old person disease? Will they withhold Alzheimer’s treatment because you only have a MILD case of Alzheimer’s
I am so tired of skirting the issue that we are heading for a Azheimer’s epidemic and changing the vocabulary just to bring down the numbers of people with Alzheimer’s and making it sound more pleasant to the ear,
Do people with MCI avoid the fears I have of dying because my diagnose of Alzheimer’s is comformed. Will I be cured with a simple rediagnosis of my Alzheimer’s with MCI. I can see how the numbers for people living with Alzheimer’s will go down and the numbers for MCI will go up but what the heck, it is MILD.
Maybe it is just the use of the word Mild that drives me crazy because I will never believe there is a Mild case of dementia. Only people not living the disease would assume it to be mild.
June 8, 2015 : How far down the road can I plan my future. No one knows what their future holds and I’m included in this. My future is likely to be day to day and the days of long range planning are over. When I wake up in the morning I never have a list of things I want to complete because I never know what my day will be like.
I may be on the top of my game or I may be lost in the fog of nothingness. Some days it is very hard to hold my concentration and others I appear like my old self. This disease is strange in the fact the my days vary so much, I am not in a steady decline, like each day is a little worse then the day before, but can best be discribe as being on a roller coaster.
Some days you bite the bear and others, the bear bites you. This is what we call our good or bad days. Whatever my future holds, Hazel and I will see it through together and the only thing we can do is throw our arms up and try to enjoy the roller coaster ride.
June 8, 2015 : It’s been asked if I write my own material or does someone else do it for me. Join me on Dementia Chats or any of the other video chats I do and find out for yourself. You will find out that a lot of water went over the dam in the last 11 years since I was diagnosed with dementia, probably Alzheimer’s and I learn a lot from the school of hard knocks.
My passion in life is raising dementia awareness and fighting for a better life for everyone living with dementia and that contributes to my well being. I write about my thoughts on dementia and what it is like for me living this disease. I disappoint some because I am not as bad as their loved ones but then again, I don’t sit around and pity myself because I have Alzheimer’s.
I try my best to motivate people into knowing that there is life beyond your diagnosis. It is a sure thing that the day will come when I am unable to do the things I do but until that day comes, I will continue to answer the question, do I write my own posts with a smile on my face.
June 12, 2015 : Today I am flying higher then a kite and enjoying my life even though I am living with Alzheimer’s. Last night Mary Howard and I spoke with a group of 44-50 people at the Lancaster General Health Campus about our lives living with this disease. We do this every 3 months to newly diagnosed people and their care partners to let them know that there is life after your diagnoses and get them on the right track with information.
We have a question and answer session after we speak and everyone appears to be involved and more relaxed about their future. It is so rewarding to me and gives me the answer to why I am doing so well living with Alzheimer’s. Raising dementia awareness and helping others cope with this horrible disease is my passion and reason for living.
Giving of your time and experiences benefits so many starting out on this road and the warm feeling you share are priceless. Join us and get United Against Dementia, climb those mountains and fly with me.
June 13, 2015 : My plants are watered and my bird feeders are full and I’m ready to start my day. My day is built around a routine that differs slightly from day to day. I take care of my plants and birds then start looking around the house to see what needs ‘fixin’.
This is when Hazel starts her redirecting routine to interest me into not trying to fix anything. It’s not like I can’t fix anything but at times I get over my head and get frustrated and annoyed. Hazel has learn the lesson of redirecting and avoiding the meltdowns of my stubborness.
Being a care partner is much more then caring for us but learning how to out smart us and keep us from frustrating ourselves. You have to put away the thought of, “what were you thinking” and try to stop me from going down that path before I do. It’s a game we play to keep peace and harmony in our lives.
June 14, 2015 : Happy Harry is at it once again, spreading sunshine like Johnny Appleseed spreads his seeds across the country. I know how hard it is living with dementia, how hopeless it feels at times but I also know the feelings of being free of the fears and enjoying what little I still have left.
My attitude is what gives me my inner peace and lets me deal with my dementia. My experience is if I have a bad attitude, I will have a bad day. Not the other way around. A bad day will not give me a bad attitude because there is always a reason why I am having a bad day.
Don’t try to fix what can’t be fix but rather do things that you are still able to do. Don’t give up, find a way to adapt to the things you think you can no longer do. Just because it is hard doesn’t mean you can’t do it. Become a mountain climber and climb those mountains in your life.
June 15, 2015 : There was the day that only Hazel took my breath away but now the heat and humidity does the same thing. I used to be able to eat the extral large but now the medium fills me up. So many things have changed over the years and not only because I have Alzheimer’s. I believe my back would still ache even if I was never diagnosed with dementia.
We tend to blame many of our problems on dementia when it is a natural turn of events. So many times I pull out my ‘Don’t blame me for doing something stupid because I have Alzheimer’s’ card. It is so much easier to put the blame somewhere else. There are times when we have to be accountable and stop blaming our dementia.
If I was always a grouchy SOB before my diagnosis, chances are I will still be. If I carried a chip on my shoulder, it will still be there. Our disease changes so many things but a lot of the things we do may be carried back from our childhood.
Don’t blame your unhappy life on your dementia when a attitude change may solve all your problems.
Harry Urban June 17, 2015 Just finished turning two boxes so Hazel can keep her treasures in.
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