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Sunday, May 29, 2016

Memorial Day Weekend (Precious Memories 1)

Sometimes you will never know the value of the moment until it becomes a memory.  
                                                      -  Dr. Seuss 

This weekend, we will stop to remember our fallen soldiers and their families.  We will honor the sacrifice they gave and the high price they have paid, so that we might enjoy our freedom.

To all of those (and their families) who have fought for our freedom, thank you for your service.  It is a priceless, precious gift. We can never repay you.

I have just come through a very different kind of war, and am thinking of my mom this weekend.  She lost her battle with Alzheimer's several months ago, but the memories are very fresh.  

I have spent some time writing, because by putting my memories down on paper, I am able to keep my mom close to me. When I write about her and remember, I relive the moments. In some ways, its like having her nearby.

If you find yourself reading this, facing the daunting, scary minefields of dementia and Alzheimers, first let me say, I am truly sorry. I never expected to walk this road either.

My mom was so active, spunky, and busy. She was so mentally sharp and independent. I just never saw it coming. By the time I realized what it was, the storm watch had become a natural disaster, so to speak.

Growing up, I never even considered the possibility that my mother would lose her mind. Maybe you’re there too. Looking into the face of a loved one, and wondering how you got here.

I’m not going to sugar coat it. This won’t be easy. For me, it was one of hardest journeys I’ve ever been forced to take. All I can advise you is to arm yourself with knowledge and love. Love will come into use more often than knowledge.

You can educate yourself backwards and forwards on this disease, and yet your loved one’s fight might not look textbook. Love will be the thing that pulls you through and carries you to the end. Even if you’re not the primary caregiver or decision maker, your contributions are important. Your particular season of life, with its commitments and responsibilities will affect your level of involvement, but be present when you can. And don’t beat yourself up when you can’t. Life changes by the minute with this disease.

There are various stages and shifts. My mom compensated very well the first few years. So well in fact, that she was able to live alone, continue driving, and appear “normal” for the most part. I started noticing changes and things I considered odd, but I honestly thought it was just me at times. Don’t ignore your gut. Start keeping a journal of your observations.

During my mom’s appointment where she was officially diagnosed, the journal I had kept, helped the doctor pinpoint exactly when the dementia probably started. We were able to see a clear timeline, and determine where she was at, and what we could probably expect next. Maybe you’ll be the only one who sees these changes at first, and it will take longer for your family to come on board. Maybe they never will.

Denial is a huge obstacle to overcome, both for the family and the one being diagnosed. Sometimes other family members aren’t around the person as much, and they honestly don’t see the changes. Sometimes they don’t want to admit that they see them.

Sometimes families are drawn closer through a situation like this and work well together, for the good of the patient. Many times it doesn’t happen that way and families are divided and ripped apart.

Dementia confuses more than just the one who has it.

You have to remember this is not about you or the rest of the family. Your loved one should be the primary focus and it is all about their well-being, safety, and comfort. Or it should be.

I chose to focus my time and energy on my mom, and leave the rest of the drama behind. I refused to allow anything to distract me from what time I had left with her. I cannot advise you in regards to the medical and legal decisions you will face. I strongly encourage you to seek out the best dementia specialists, and attorney you can find and afford.

Educate yourself. Make sure your loved one’s estate is in order. Make sure you have the power you need, if it becomes necessary for you to make legal decisions, handle finances, and apply for benefits. Power of Attorney and HIPPA access may not be enough. Talk to someone who specializes in this field. Do your research and homework even before you think you need to. It will save you a lot of time and heartache down the road, when you need that energy to focus on your loved one.

Most of all, take a deep breath. Make precious memories while you can, and treasure the small things. Value the moments, as they become your memories.
*The Precious Memories posts you read here, are dedicated to my mother, who lost her battle with Alzheimer's. I share snippets of our story in these posts, and some things I learned along the way.

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