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 excerpts from Harry’s blog during November & December of 2015.
These are on subject of Relationships
(this includes suggested Lessons for Care-Partners to Learn)
It is so hard to shake the feeling of depression when you are living with dementia. You try to do something and only make the matters worse. You lose confidence in yourself and your ability to do the things you once did. It’s ok and it doesn’t matter doesn’t mean a thing to you because you know you are losing the battle. When someone tries to cheer you up you get angry because they don’t realize the lose you are feeling. It may not be a big deal with them but to you, you know different. They may tell you all the wonderful things you can still do, but I think they are only masking the problem. I lost another piece of my life. I could take a “happy pill” that will dull the depression and give me the comfort to give into my disease or I could fight my way back. You as my care partner cannot fix my problem and must show patience and understanding as I walk alone on the path. You will be able to join me once I find my way back. – Harry Urban 2015-11/29 Tags: depressn, confidence, grief, abilities, relat, partnr
All I want for Christmas is you has a double meaning when you are living with dementia. When I say that, I mean that I want to remember you and your name at Christmas.
We know things will change and the day will come when I forget you, … not the love we shared but the person I see.
At times it is so hard to handle the things I know
because they will come true
and there is nothing I can do to prevent it.
My faith and the knowledge I am doing the right thing will help me …
The day will come when I no longer need to carry this weight
and I will be forever in peace.
– Harry Urban 2015-11/29 Tags: gift, relat,
… I am having an increase in not finding the words I want to say. … I’m beginning to need more time to process what you are saying … People closest to me may see the changes but don’t want to admit …
Sometimes it is safer for them to only see the bright side. – Harry Urban 2015-11/08 Tags: symptms, denial, conversatn, relat, commun
How many people really have control over their lives? I would say not many. I think I do because my giveadarn broke and I’m not going to fix it. I should worry about so many things but I don’t. My responsibilities in life are few and not worthy of worry. My dementia did this to me. It is almost like it took away my feelings of caring what is happening around me. I refuse to be involved in family squabbles and the desire to be better than someone else. It’s not a bad thing because I found a peace that is separate from the hustle bustle of everyday life. It seems all my responsibilities were handed off to the people caring for me. I miss the things I once did and regret knowing the fact I was once able to do them … but the day will come when that will pass also. – Harry Urban 2015-11/04 Tags: relat, respons, acceptance
… I have the strength within me to live with my disease.
… Your sadness over my condition only distracts me from fighting the battle within me.
… You need to grieve … but not in front of me.
I need to know that you will be ok in my passing.
– Harry Urban 2015-11/05 Tags: strength, sadness, relat
Hazel is my care partner because we indeed have a partnership. There are no secrets between us because she would never be able to care for me if I would never let her into my world and teach her what living with dementia is all about.
It saddens me when someone tells me that the person they are caring for is unwilling to talk to them. I wonder how they care for them without knowing what is going on with them. Caring for someone is more than keeping them safe and comfortable, it is also about caring for their emotional needs. Unless we living this disease opens up to you, you will never know how to help us. Gain their trust so they are willing to share the things that scare them. Don’t analyze it, just listen and learn how they feel. – Harry Urban 2015-12/02 Tags: partnr, relat, listng, DRT
When someone with dementia gets upset, it isn’t a matter of just getting over it, the emotions may last for days. It’s like the needle gets stuck on the record and keeps repeating in our head.
The littlest of things can make us react in ways that are out of character for us. We can’t process that the argument or event is over and we need to move on. Slowly whatever upset us will fade away like it never happen.
This is when our care partners must show patience and understand that we are not trying to continue whatever upset us but unable to understand it is over. As hard as it may be, you may need to put on your happy face and help me through it. – Harry Urban 2015-12/10 Tags: symptms, conflict, relat, partnr
Every day, literally, I get hundreds of emails with most of them being some sort of junk mail but sometimes one or two may be important. I usually skim though my inbox and do a general delete because I know I’m not interest in buying what they are selling. Take for granted the three cancelation notices I got telling me that my domain mythoughtsondementia.com would be cancelled unless I paid the yearly renewal fee of $16. Now this is important to me but my general I don’t care attitude just made me delete those emails without a glance.
First thing this morning I got on my website to update it to find a message came up that mythoughtsondementia.com was available for sale. I thought, hey that’s my domain, what in the world are they doing trying to sell my domain.
I told Hazel what these goofballs were trying to do to me and she told me to relax and she will call them. She called them up and they apologized and told her about the three notices they sent me which I ignored. All was repaired and my site will be up and running within the hour.
Now that my heart is back in my chest and beating regularly, there is a lesson to be learn.
Never let important emails come only to a person living with dementia unless you enjoy doing damage control.
– Harry Urban 2015-12/31 Tags: commun, DST, relat
Are you learning anything while living with or caring for someone with dementia? Are you so wrap up in this disease that you are missing out in the lessons that are being taught? Besides learning patience and understanding there are lessons to be learn that you will carry long after the person you are caring for passes.
The person with the disease is being taught about themselves. They are learning how strong they are and what their limits are. Just like in high school when you were being educated you have the option of just getting by. Learning will bring tears and many fits of anger until you completely understand the lesson. … — Harry Urban 2015-12/15 Tags: Learn, partnr, spirituality, relat,
I often speak about the lessons I learn while living with Alzheimer’s. These are the lessons I needed to learn to find my inner peace and learn to live WITH my Alzheimer’s. The person that is caring for me also needs to learn some important lessons.
Lessons to learn from dementia.
- Even when you can’t “fix” it, you can still care for me. My disease is unfixable so spend your time and energy on helping me live with this disease.
2. Know and expect the changes that will be occurring along the way.
3. Learn you don’t need to be right; you will never win an argument with someone living with dementia.
4. Your attitude is powerful. I will sense your attitude, and react accordingly.
5. I’m still a person, so treat me like one.
6. ‘I’m still living’ – quality of life is possible in dementia
7. ‘We’re LIVING with dementia, not dying from it!’
8. Those who provide care must be valued.
9. Hope makes a difference, if you have no hope, neither will I.
10. Dignity must be maintained throughout the disease.
-Harry Urban 2015-12/17 Tags: lessons4partnr, relat
… Visit someone with dementia so they do not have to walk alone – Harry Urban 2015-11/28 Tags: gift of visit, advocacy, relat
What does it take to become a dementia motivator? I’m not talking about someone that takes care of our needs or someone that mentors us, but someone that motivates us out of the dark places we go and convince us we are capable of dealing with the fears we have. They are the people that make house calls, they step into your world through the muck to find you and guide you back into the light again. They most likely walk in the shadows themselves and know it well. First hand experiences are the best way to learn the trade and the lifespan may be short but so rewarding. You don’t do it for the fame and glory and recognition is not given unless by the person that was motivated. If you think you have what it takes to walk in the shadows, you will realize the gift you were given. – Harry Urban 2015-11/09 Tags: motiv, visitrs, DM,, relat
Just because I have Alzheimer’s doesn’t mean I can’t live out my fantasies. … During Christmas I can spread the joys while living behind my disguise. I become this man that everyone loves that we call Santa.
No one feels sorry for Santa or pities him because he has Alzheimer’s. Unconditional love is shown toward Santa during this time of year and they talk to him even if it just a hello Santa. They see him and don’t just walk by him. I wish I could be Santa every day of every year. – Harry Urban 2015-11/25 Tags: relat, Santa, stigma
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(( Worth repeating about 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 — 2015-09/13
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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