Harry is one of my primary mentors, and the prime reason I take the time and energy to write my own blog, and the many hours I spend to share the writing of others.
Below are some excerpts from Harry’s blog on subject of Communication during September 2015:
September 8, 2015
… I have better control over my dementia when I can keep my emotions under control. I avoid stressful situations and only deal with the things I can handle.
I rely on Hazel to handle any family squabbles and stay out of their daily dramas. Keeping a calm attitude and letting go of your problems will make living with dementia that much easier.
September 8, 2015
It’s surprising how time slips away. You wanted to call someone living with dementia but just couldn’t find the time. Then the day comes and you finally find the time in your busy schedule to call them to find out that they no longer know you.
It’s a shock, how could this happen so fast. Dementia waits on no one, it can be a long goodbye or a short leaving. The lesson to learn is that time does slip away and has no attention on waiting for you. You must find the time because when you are living with dementia you have no control on how much time have.
September 12, 2015
Your patience will be strung to its limit when you are caring for someone with dementia because of the stress it brings. You may lose your patience and later feel guilty because of it. This doesn’t make you a bad care partner but one that needs help with their stress.
Caring for someone with dementia requires a considerable amount of understanding and patience. The person may be prone to mood swings, violent behavior, and hallucinations. When you encounter these moments during care, you need to maintain your patience, continuing to speak to them in a calm, soothing voice.
This may help divert their attention from the cause of their agitation and can diffuse the situation. In the event their behavior does not subside, it is better to walk away from the situation until they are calm, as long as the person you are caring for is safe. You should never disagree with what they are saying or attempt to convince them that are wrong and you are right; this will only escalate their agitation.
September 22, 2015
Alan Jackson recorded a song that said, “I’m in love with you baby, but I don’t even know your name. This reminds me of someone living with dementia that may be entering into the latter stages of dementia and forgets their spouses name.
They know they are in love with this person, but they don’t remember their name. Does it change how they feel about this person just because the can’t remember their name or does the love stay forever in their heart.
A name is only a name and not a feeling. I may not remember your name, but if I love you, you will forever be part of me.
September 23, 2015
… I realize the frustrations of my disease is only as bad as I let them be. I also realize my Alzheimer’s is harder on the people caring for me then it is to me. They have not learn how to let go and not try to change the things they can’t. How I wish I could teach the secrets that I learn and help people realize it is not the end of the world but the beginning of a new one.
September 27, 2015
Living with dementia is so incredibly hard due to the fact we know what is happening to us. We know the love and support we are getting but we also understand the tears and frustrations we are causing. You may think you are hiding the pain you are going through but your eyes are a dead give away to the truth.
We living this disease are experts in reading your body language and seeing the turmoil we are causing. We know we are not doing this intentionally but that does not stop us from carry the weight of your moods. Instead of blaming our disease, we blame ourselves.
I can only suggest you learn more about the world I am trapped in and see for yourself that I am ok and learning how to live in this world. You just might find out that you are worrying needlessly and I am doing fine with what I have left.
* * * (( Communication with SELF ))
September 13, 2015
I’m going to sit right down and write myself a letter. In this letter I will write why I want to continue fighting my Alzheimer’s and what I need to do to stay out of the shadows of dementia. I will list the things that I refuse to let Alzheimer’s steal from me and what is keeping me alive. I will tell about the joys I have in life and remind myself that there is life after my diagnosis.
My letter will be kept where I can read it everyday and remind myself never to give up. — Harry Urban
Harry also has a group of both text and virtual support groups through “Forget Me Not”. Website is at http://www.forgetmenot.support/
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Wanted to let you know that this article will be included in the dementia “Symptom Perspectives” monthly links tonight, October 30, 2015
I would like to thank you for sharing your lived experience. My hope is that these words and projects can become valuable resources for change in relationships, treatment, and policies.