Saturday, January 30, 2010

The truth and Alzheimer's

I met someone the other day whose grandma has Alzheimer's. Sometimes Grandma inquires about her late husband. Most family members tell her that he's in heaven.

Should you always tell the truth to someone with Alzheimer's?

I honestly have to say no.

Will it help? Will it hurt? You never know because the person with Alzheimer's could respond a different way every time to the same bit of information.

Here's a story from my book on Alzheimer's that is a prime example of when you should NOT tell the truth:

A few weeks before completing this book, I attended the funeral of one of the clients from the Alzheimer's support group. Cancer had claimed Ed, who also had stroke-related dementia. A few days earlier, his wife, Shirley, had attended the monthly dinner gathering of the support group members. I asked about Ed, and she said he was home under hospice care, and that her children had told her to get out of the house for awhile to see her friends.

I asked Shirley how she was coping. It had been difficult, but she told me that the dementia had been a blessing in a way. I remembered one of the sessions when Shirley described Ed’s reaction to finding out that his cancer had worsened. Then the dementia made him forget. When he heard again later about his cancer, it was like hearing it for the first time, and the family decided not to mention it again in front of him, to not put him through that emotional distress again.

Later that night after Shirley and I talked, Ed passed away with family gathered …

Hard news, tragic news, old news … don't keep repeating it. How would you like to hear that your spouse had died as if you were hearing it for the first time again and again and again because you couldn't remember? Or that you have cancer? Even if you forget, it's still tears you up inside every time like the first time.

Really, what's the harm in just saying, "He's at work" or "She'll be back in a little bit" or "You're doing fine." You're not being deceitful. You're being compassionate.

Sometimes that's the greatest gift you can give to a loved one with Alzheimer's … honest.

Thursday, January 28, 2010

Alzheimer's: The wayward banana peel

We all miss the trash can now and then when our basketball skills get a little rusty. Or sometimes we're a bit lazy and don't feel like bending down to collect what has fallen behind or around the circular file, especially when nobody's looking.

Yes, I confess. I've done it.

However, someone with Alzheimer's may forget where the garbage can is … or only remember where it was kept years earlier as recent memory fades … or as the disease progresses, may not understand the purpose of the trash container. Caregivers or others may find some unexpected surprises. One wife notes:

Found a banana peel strewn under the sink … not where the garbage receptacle is kept. Oh, shoot, now there is something else I have to keep my eyes open for … garbage.

Where's your garbage can now? Is it in a different place than it was five or even 10 years ago? Where was it kept when the person with Alzheimer's was growing up? I don't, but a lot of people keep their can out of sight under the sink.

Alzheimer's steals the habits of our lives, the things we do automatically without thinking, and jumbles them. That's why caregivers often tell me how they find garbage or dirty dishes in the cabinets and the good and valuable stuff in the trash.

Now you know just one of the countless reasons why caregiving is a 24/7 job.

Tuesday, January 26, 2010

Alzheimer's: "Isn't it time to go home?"

While visiting a friend in the Alzheimer's wing of a nursing home, I spent much of the time observing and trying to make sense of a disease that makes no sense. My friend doesn't talk much these days, and any conversation really doesn't make much sense. But that's okay because we were interacting and keeping him connected with the world around him … which is this corridor of rooms.

He was in a pretty good mood today, smiling and laughing. He shook his head at the man who continued to get out of his wheelchair, setting off the alarm countless times. The bell didn't phase my friend or any of the others who sat or walked. I knew I'd go mad if I had to listen to it for very long.

One woman mumbled that "It's okay if you want to talk about me" and walked away.

Another woman fretted about her babies, hoping they weren't sitting out in the cold and snow. She asked no one in particular if her babies had been fed.

"Isn't it time to go home?" she asked one of the staff.

"No, not yet," the staff member replied gently.

"Well, when?"

"In a little bit."

"Okay." She was satisfied with that answer and settled into a chair to await her ride home.

The staff member knew she wasn't going anywhere. I knew she wouldn't be leaving anytime soon as this is her home now. This is where this Alzheimer's patient needed to be for her own safety and because she needed the constant supervision that her family could no longer provide. But she didn't need to hear the truth because it would only upset her.

Where would "home" be for someone with Alzheimer's? Is it the place where they last resided? Or is it the only home they can remember, the place where they grew up? No one knows, and it doesn't really matter. Let them "build" their home anywhere they want, and assure them when they ask that they'll be going there sometime soon. That's all some of them need to hear.

A comforting lie can be more powerful and calming than the truth. That's definitely worth remembering when it comes to Alzheimer's.

Friday, January 22, 2010

How do you mend a broken heart?

It's a BeeGees' classic …

"How do you mend a broken heart?
How can you stop the rain from falling down?
How can you stop the sun from shining?
What makes the world go round …
Please help me mend my broken heart and let me live again."

You can't stop the rain. You can't stop the sun. Thank goodness! If human beings controlled the rain or the sun, we'd drown or burn. It's best to leave those things in the hands of a much wiser higher power.

How do YOU mend a broken heart? Not even the most skilled craftsman, surgeon or seamstress is up for that challenge. Mending a broken heart is an inside job accompanied by an abundance of love and understanding from those who surround us. Yes, we are the only ones who feel what we feel … The tears, anger, guilt, pride, stubbornness and grief, all focused and locked inside us, can impair our vision so much that we do not see what the exhausted or broken heart is doing to our bodies and minds and spirits.

Are you or do you know someone who is a caregiver to a loved one who has Alzheimer's, or has had a stroke, cancer or other catastrophic injury or illness? Have you lost someone you loved with all your heart? Has your heart been broken?

Are you afraid to say, admit, acknowledge or ask for help to "Please help me mend my broken heart and let me live again"?

Sometimes we do not know what is best for us when we are bogged down by the tears, anger, guilt, pride, stubbornness and grief. Sometimes we don't see what's happening to us when we look in the mirror. But others do and when they tell us what they see through their eyes of love, we don't want to hear or believe it.

We cannot make this journey of life alone or with only one person. We were created to be here for and to lift each other when we don't realize we need many spheres of companionship and love to fully experience life. There are more genuine open arms to embrace us and shoulders to cry on than you can begin to count.

No one will ever take the place of someone we love, whether they have been affected by a debilitating condition or have passed away. But we can be enriched more than we ever imagined by allowing a circle of friends, family and even strangers to each bring their own little repair kit to help put us back together again.

That's how you mend a broken heart because you can't do it alone. And those we lost and those we care for would certainly want us to live again.

Monday, January 11, 2010

Grief: How do I take my own advice?

I write about it, I talk about it … now I have to weigh the value of my own words.

I lost one of my best friends Saturday. I was not prepared for Molly to … die. I was prepared to help her when she would get home from the hospital. She had scribbled a grocery list, and I promised to do the shopping when she was released, when she got the OK to go home where her frisky and loving dog awaited her return.

I wasn't prepared for her to leave me after the countless hours we had spent together in the last three years … all the phone calls and emails that we had shared. All the laughter and tears we had exchanged and absorbed. All the conversations we had had about the REAL challenges of Alzheimer's and life itself.

Molly was a retired kindergarten teacher and an expert on Alzheimer's … a caregiver for her husband Joe, a devoted wife, mother and grandmother. She didn't need a variety of credentials to earn the expert title. She opened her heart and home when I was working on my book about Alzheimer's. She bared her soul when the pain of caregiving was real and let me know if I really "got it" or if I was full of crap when I put it all down on paper.

I got personally involved because I couldn't help falling in love with Molly and Joe and their kids and grandkids. They weren't one of those statistics. They were a real family with real challenges, and Molly gave so much of her time and energy to helping and motivating and inspiring and consoling other families. That literally took guts and passion, and rarely will you find someone with all that and a smile when you really needed it.

As my husband Roger and I embraced and sobbed upon the news of her passing, he whispered that she was the "Unsinkable Molly …" Yes, she was unsinkable, unstoppable and a whole Thesaurus of those "un" words. However, it was unthinkable and unimaginable that her tired body would be unable to continue the journey.

She told me of life's challenges along the way and how she would resolve them: "Just something Molly needs to walk herself through, with the help of God and friends!"

I console myself with my own advice to continue celebrating her life while giving myself permission to grieve, to allow the tears to flow and not apologize when I have a "Molly moment."

Yes, life would be much easier, or let's say, less complicated if we didn't allow ourselves to bond with others. It's safe not to get involved or not to care too deeply. It's hell to lose someone you love, but I wouldn't give away this pain for anything if it meant I couldn't have had Molly in my life.

The joys and the wisdom she gave me and the world will far outlast the tears and the emotional and physical pain of loss that will consume me now and in the immediate future as I, like Molly had, walk myself through, with the help of God and friends.

She once wrote me after one of my blog entries: "I hope this is read by a lot of people as a story like this can educate many. What an educator you are and to think I know you!"

No, Molly, what an educator YOU were and to think I knew YOU!

Tuesday, January 5, 2010

Alzheimer's: What will a new year bring?

As 2010 dawns, millions of families who have loved ones with Alzheimer's, dementia or memory loss have to wonder: What will the new year bring for mom, dad, spouses, siblings, friends …

What will it bring for any of us?

Nobody knows. But with something as complicated as Alzheimer's, you can't predict 12 minutes from now, let alone 12 months.

However, families can be sadly assured that they'll discover a lot of rude awakenings as the disease progresses. One of the biggies is what their insurance and Medicare will and will NOT cover, specifically for Alzheimer's medications, assisted living and skilled nursing care. It's brutal to hear again and again, "Sorry, not covered."

That's one of many reasons why those families that are still in denial about the facts of this disease and how it's affecting them may actually need some rude awakenings … so that they can confront this challenge with open eyes. I don't say that to be cruel, rather to educate those who don't fully comprehend the unpredictability of Alzheimer's.

Commit to memory today the need to remember tomorrow.