Wednesday, November 6, 2013

Read Rick Phelps' Words -- They're Important

This is important reading. (It's often been my contention that many of the things done by homes that care for dementia patients is actually for the benefit of family members and *not* those who have the dementia. In other words, it's for show, not therapy.) I have highlighted several points I feel are really important.

From Rick Phelps, diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. 

Living with Dementia. I have researched this for a very long time. Every time I have to shake my head.

Where to they get these people who write these articles? Without fail every site I have seen goes into detail of what to do, what not to do, what your loved one should be doing...and on and on.

I wanted to list a few suggestions they give:

Look after your health:

They go into detail about how living healthy life styles is the very best way to prevent dementia. Really?

I like to think of myself as a somewhat healthy person, even after being in my fourth year of my diagnosis.

My life style had/has nothing to do with me being diagnosed with dementia. It just doesn't.

Maintain a social lifestyle:

This is another suggestion where it makes no sense at all. The last thing you will hear a dementia patient say is "I just love being in a room full of people" or " I can't wait for the holidays, all the kids and commotion. I just love the confusion the holidays bring."

The truth is people with dementia by far do not want anything to do with a social lifestyle. Once again, this is just what people perceive. The busier the patient is, the less they will notice dementia. Again, doesn't work.

Try to sleep well:

I have been battling sleep disorder for years from this disease. You will read that sleeping pills will help, as will no napping during the day.

From experience I can tell you sleeping pills do not work. Sleeping pills will help you if you are suffering from not sleeping. What we as dementia patients suffer with is much more than not sleeping.

It is a disease of the brain, and no sleeping pill is going to help that. Also I hear all the time, no napping. This again is wrong. You know how you feel when you are exhausted, mentally and physically exhausted?

Well, thats what it's like for a patient. If they are tired, or sleepy why on earth would it matter to let them take a nap? It doesn't. Another misnomer.

Keep active and occupied:

I especially love this one. Some think we are like little children. Keep us entertained and we will be fine.

Not true. Not even close. Some of my best, quality time is spent doing nothing. I don't have to be entertained by anyone, at any time. My brain is going 100mph 90% of the time as it is.

I don't need to do brain games, or teasers. These just make a bad situation worse. When you have a memory deficit, why would anyone think that doing something that exploits that very deficit would be good for anyone?

Self care:

This is what they say about "self care"..."Self care is an integral part of daily life and involves taking responsibility for your own health and wellbeing with the support of those involved in your care. It includes the actions you take every day to stay fit, maintain good physical and mental health and prevent illness or accidents, as well as the effective care of minor ailments and long-term conditions."

This is fine if you live in the land of Oz. "Actions you take everyday to stay fit?"

Myself, just putting one foot in front of another is a challenge. But these people want me to stay fit. When you have dementia, which is a disease of the brain, everything changes. Everything.

Maintaining good physical and mental health...this all sounds good. It's just not reality.

If I can remember how to make coffee, it's a good morning. If I can make out what my wife and I talk about in the mornings, it's a good thing.

The only real thing you remember with this disease, is that you have this disease. The one thing you wish you could forget, is the one thing you simply can't forget...

This is just an example of how out of touch some people are, yet everyday they tell you how your loved one should be reacting, or what you should do for them.

Do yourself a favor, use some common sense. That will get you further than any suggestions from someone who think they know this disease. It really will...

Are they safe?

Are they pain free?

Are they content?

These are the three things you can make sure of. All the other, is what the experts "assume"....

About Rick: 
Rick Phelps was diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at just the age of 57. He lives in Coshocton County, Ohio, with his wife Phyllis June, with his family and grandchildren nearby. Rick worked in public safety for 24+ years as a law enforcement officer and an EMT for Coshocton County EMS until this diagnosis forced him into early retirement.

When Rick was given this terrible diagnosis, he saw the need for action and compassion and took his life saving skills to a whole new level. Using a platform that millions were already familiar with, including himself, he created a support and awareness group on Facebook, called Memory People. He knew there were others that had questions and needed help, as he did. That was in November of 2010. Memory People is currently over 4,000 members and growing daily. Here is their link:

1 comment:

  1. I have to admit that I have no experience with people living with Alzheimer's. However, I recently read "Still Alice" by Lisa Genova which moved me deeply. What Rick says here is what I found in that book as well.
    I found your blog through a link of one of my Facebook friends, and I wonder why at this time when I had just finished reading "Still Alice" a couple days ago? The photos of your father are very touching. I admire you for what you are doing, Cindy, and I wish you all the strength you probably need. Thank you for sharing this with us.


Thank you for sharing this journey with us.