What Can I Do?


What can I do?

That's the question everyone has about their loved one: What can I do?

With dementia everything changes all the time. What works today may not tomorrow, or ever again. This only adds to the stress of a caregiver. You will read suggestions in our Facebook support group, Memory People, that say "try this or try that."

Some suggestions work. Some will not. Every patient is different. And every patient does not react to what you are trying to help them with.

I think the most important thing to remember is how your loved one was, not how they are now.

Chances are, they belonged to the generation that was a proud, patriotic and private generation. Hardly ever complaining. Used to doing things themselves. Hate asking anyone for help, and certainly didn't want to be a burden on anyone.

But all of this goes out the window when you reach the mid-to-late stages of this disease.

As an emergency responder, I used to make life and death decisions, sometimes in seconds. Now I stand in front of my sock drawer for minutes, thinking: "Which pair?"

I cannot stress enough how everything changes with this disease.

Most family members and caregivers see this change, yet treat their loved one as things once were. It's natural but, in the end, it won't work. So the answer to "What can I do?" is always: nothing.

Nothing—meaning you can be there for them, you can assist them with daily things, you can be their caregiver...but you can't change what is happening.

Try to learn all you can about what is happening to them, but understand that you can't fix it. As bad as things are today, today may very well be the best day they ever have again.

I, along with everyone else affected by dementia, wish things were different, but they're not. It's those who go through this journey thinking things will get better, or that they can do something to "fix" what is happening, that will struggle the most, in the end. They are, indeed, just fooling themselves.

I myself have had to come to grips with this disease. Long ago, I made peace with what is happening, and what is going to happen.

That doesn't mean I like it, or that I don't long for some drug that could make my life more manageable. I wake up every morning and go to bed every night knowing what is going on inside my mind.

That realization, I believe, is the hardest part: losing your mind and knowing it is happening.

As patients, we try hard to keep our feelings in check.

As caregivers, you try hard not to look at a loss.

Both of us are kidding each other. All we have, in the end, is each other.

I don't like what is happening, but I have learned to cope with it. For now. Right this moment. An hour from now, I may not be able to say that because, an hour from now, I will not remember making this post. That's what can't be fixed.

Live in the moment. Don't worry about what tomorrow or next week will bring.

For me, there is no tomorrow. There is only right now. My yesterdays have long been gone.

One day at a time. Sometimes one hour at a time. It's all we can do. And really, it's all I can handle....

Editor's note: Rick's journey with Early-Onset Alzheimer's disease was chronicled in "Fade to Blank: Life Inside Alzheimer's," an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on AgingCare.com.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

While I Still Can

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Thank you for this, Rick. It helps me understand what my husband is going through so much better. Like you, he was a health care professional - graduated 2nd in his class. They told him to work crossword puzzles to keep his mind active so he spends a lot of time doing that. He used to play violin but can't manage that anymore.

We've been married 58 years. It's hard to watch what is happening to him, but your post has helped. Thanks again.
Thank you for sharing this. I needed to read this tonight . Many Blessings
Thanks Rick, I admire your courage, I just know I'd be terrified, always working through fears. You are so right, it is One Day at a Time. My mother is residential care, each day is different when I talk to her. I am providing hospice care for my beloved pet now, it is gut wrenching with the two hard realities at once, but as you said, I take care of today, I put one foot in front of the other, I find the joy I have today, yesterday is really gone, and I lose the gift of the present staying fixated on worrying about tomorrow. I wish you the best.