These are seven of my favorite excerpts from my friend Harry Urban’s blog during second half of June 2015 (Part B).
June 18, 2015
Several of my friends are being discouraged from writing about their disease by critics that assume they know more about their diagnosis then their doctor. They claim just because they are able to state a point that they can not have dementia. In my eyes they have three choices, the first is to try to ignore them but the sting of their remarks still hurt. I don’t like being hurt so this choice is not good for me.
The second is to be polite and try to educate them on how everyone is different living with dementia. I don’t like when I have to defend my diagnosis because it makes it sound like I’m trying to cover something up, so I shy away from this choice. My thoughts on dementia are my thoughts and right or wrong they are still my thoughts.
The third choice is the one I usually take. I figure if someone is going to attack someone with dementia, they should be strong enough for my reply. I usually choose to cut them off at the knees for being so damn ignorant of dementia. They may be caring for someone with dementia but they only know that one person. Unless you are living with this disease you only know what you observe and that is the extent of you knowledge.
Before you accuse someone of misrepresenting their disease, learn about them and how they think. There is never two people alike in the world of dementia.
June 23, 2015
My dementia will never rob me of loving you. It may rob me of the ability to display my love like I once did but just look into my eyes or the way I caress your arm and you can tell that the love is burning as strong as ever.
Don’t turn away from me because you think my dementia stopped me from loving you. The emotion is still there but the way to express it may be gone. So many times we read into situations and assume that emotion is gone but we only lost the way to show it.
Our physical love making may be gone but we can make love with our emotions. This type of making love is more interment and sincere then any clashing of bodies. We are still here but you will need to find the way to reach us, we may no longer know the way.
June 23, 2015
Are you cheating on your spouse when you are flirting with them not remembering that they are your spouse? Some days I thnk about the stupidest things. The spouse mat be jealous even though it is them you are flirting with. The person with dementia only sees the person they love and responds to them.
I was asked this question one day by a women that visits her husband in a care facilty and he no longer recognises her. He is always rubbing her arm and trying to get close to her. She was concerned that he was trying to cheat with another women even though it was her.
I asked her how she knows he doesn’t remember her and she responded that he no longer knows her name. I shouldn’t have but I did, I laughed and tried to explain that love runs deeper then a name.
I can recognize Hazel without seeing her by the smell of her perfume or when she touches me. She can come up behind me and put her hand on my should and I know it is her.
People with dementia learn to use their other senses in ways that it is hard to explain. Get to know us and don’t jump to conclusions because we don’t live in you world anymore.
June 25, 2015
The dreaded eye doctor appointment today, To many choices to my liking . Which is better, this one or that one. We can put a man on the moon but they rely on someone with dementia to tell them which is better, It is fun to watch who gets frustrated first, me or the eye doctor.
June 26, 2015
I just finished turning another ‘box’ for Hazel and I’m feeling pretty good about myself. I struggled turning this and at one point it ‘slipped’ out of my hands and went bouncing across the floor during my frustrations. I believe this is normal for someone living with dementia and we should be allowed to show our emotions as long as they are under control.
Frustrations leads to anger and only once did I lose control of my anger and it scared me to death. I hated myself and vowed never to let any frustration get the better of me. I had to learn this lesson and find ways that are more suitable to get rid of the tension and frustrations in my life.
I still get upset at times and we got very good at redirecting or walking away from a problem. Back in the day a good shouting match was fun but I can’t afford to lose control of my emotions now because that filter in my brain that tells me to stop, doesn’t seem to work anymore.
June 29, 2015
The Glen Campbell special shown what it is like advancing with Alzheimer’s. I see myself in most of the things that Glen went through. If you only listen to Glen Campbell playing his music you would say that there is no way he could have Alzheimer’s but when you got to see his everyday life, it brought tears to your eyes.
So many tell me, Harry you can’t possible have Alzheimer’s because you write so well. If they only got to look behind the curtain that I put up, they would be shedding the same tears my family is shedding. Glen Campbell has his passion for music and my passion is raising dementia awareness.
To use a phrase from a good friend of mind, we are trying to explain what it is like living with dementia, “while we still can”. It is so hard to believe what we say until you see a video like Glen Campbell’s family made, then the reality of dementia becomes real. The next time someone opens up and tells you their story, don’t judge them until you know their whole story, you may end up shedding some tears,
June 30, 2015
People with dementia can be so judgmental at times, not with others but judging their own abilities. So often we give up when taking a break and trying again later will help us succeed. Stopping before a meldown or letting your frustrations get the better of you is the secret.
You care partner must master when it is time to take a break and just do something else. I may insist on keeping going but you have to have the ability to stop me and redirect me into a different direction.
Living with someone with dementia is hard but learning the little secrets on what makes us tick makes life a little better. Everyone is different but by getting to know the person makes it easier.
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