Saturday, November 30, 2013

Where's Cindy?

Very tired today.
Holidays are difficult. It's hard to enjoy them when you know your loved one can't.

Dad is becoming more and more confused. His difficulty with eating has progressed from forgetting how to use a fork or a spoon to forgetting how to bite down on a piece of food, or how to get the food from his hand to his mouth. Often, I will hand him a cookie or a piece of sandwich and he will just look at it for a while. "What do I do with this?" he'll finally say. He'll pick up his drink, then hesitate. "Is this right?" he asks, tentatively bringing the glass towards his mouth.

When I arrived today to visit him, the aides were having a bit of trouble with him. It was lunch time, but he was refusing to sit down at the table. I got him to sit with me and we ate lunch together (i.e., I helped him eat his meal). Food just isn't as appealing to him as it once was, though he still declares his chocolate milk to be "the best drink out there." God forbid we visit him without a couple of quarts in tow. :)

Today Dad asked me, "Where's Cindy?" I'm not sure if it's so much that he didn't know me as it is that I'm looking more and more like my mother as the years pass. (I startle myself sometimes when I look in the mirror and see her instead of me. Weird feeling.) He may have thought I was her. Still, even after all this time, it makes my heart twinge a little when he doesn't know me.

New slippers.
Took in some new slippers that Sis had ordered for Dad. They were made for diabetics with extra support and some added structure at the toes. We thought it might provide him with more stability for walking. He declared them "quite comfy."

Next Friday is Memory Care's annual holiday dinner. Holiday's hold no meaning for Dad anymore, but Sis and I will be there to share in the spirit anyway.

Sorry for the somewhat sad tone of this post.

As I said, holidays are difficult.

Friday, November 22, 2013

Don't wake up with regrets

I've found it hard to sit down and write a new post for this blog because I'm still feeling sad over Christina's death. (Too young, too young to die.) Her passing was also an in-your-face reminder of how brief life is, how quickly we can lose those we love and care for. Never count on tomorrow. Always tell the people that you love that they are important to you. Don't find yourself waking up one day with the regret of unspoken words. Promise?

A couple of recent pictures of Dad for family to see.

Thursday, November 7, 2013

Goodbye, Christina

Dad and Christina.
How is it possible that the young woman I wrote about a couple of months ago here on Dad's blog, and the young woman who was killed in the parking lot of an apartment complex here in my town yesterday morning, are the same woman?

How can that even be?

Christina was one of my father's favorite aides at the Assisted Living facility where he lives. She worked in Memory Care and she took such good care of him. We loved her for that. When she took another job because it paid better, we were sad to see her go, but wished her well. How could we not? She had treated Dad with such gentleness, such caring.

She had been so kind to us, too, my sister and I. And she made us laugh. I'll never forget the time she told us about Dad asking her, this beautiful young woman of color, if she were a slave. (It was the Alzheimer's talking, and she knew that.)

"I told him, 'No, Harold, I'm a free woman'," she said with a laugh. "And it made your Dad so happy."

And now she's gone.

Gone? How, in God's name, is that even possible?

I need answers, but there are none. Only a deep sense of loss...and tears.

Christina was young (only 23), vibrant, full of life. I wish I had one last chance to tell her again how much her kindness to my Dad meant to us, how much easier she made it because we knew she was looking out for him.

I hugged her the last time I saw her. I hope she knew how very much I meant it. I hope, whatever she suffered at the end, she's now at peace.

You will be remembered, Christina, with gratitude and love. Thank you.

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: