Friday, October 30, 2009

It's OK to cry at funeral homes

As I get older, it seems like I'm attending more visitations and funerals. One of the most noticeable changes has been the informality during the block of hours in which families accept friends of the family and/or deceased. Whereas I remember the quiet, solemn lines of folks dressed up with nary a whisper, the visitors are much more informal these days, conversing, smiling, even laughing and many times attired in comfortable everyday clothing, including jeans. Visitations and funerals have become family gatherings, almost like a reunion in the park without the baked beans and hot dogs.

After standing in a particularly long line this week for a dear friend beloved by many, I, too, was one of those engaged in conversation about the everyday stuff and embracing some friends I hadn't seen in a while. I actually welcomed the "distractions," because a part of my heart deeply mourned the loss of this friend. I had already shed several tears and hoped to make it through the line without succumbing to them again.

However, about six feet before my husband Roger and I reached the family to extend our condolences, the pain of loss again attacked my tear ducts and released the waterfall. As it was now our turn, I smiled and told the family with a smile that I was trying to regain my voice to console them on their loss. They smiled and shared the tissue box they kept close at hand.

At first, I felt kind of silly, because in the growing crowd, I didn't see anyone else shedding tears. But I suddenly didn't care as Roger and I reached the open casket, in which my dear friend was now finally at rest. My tears fell as steadily as Roger's hand that patted and rubbed my back in comfort.

The emotions that decorated my flushed face were evident as we exited past the growing crowd, but I didn't care. I decided to take my own advice that it's OK to cry when something far more important tugs deeply at your heart and soul, especially the loss of someone who had given my life so much love and inspiration.

It's OK to cry at funeral homes. The operators understand … and they also buy tissues in bulk for people like me.

Thank you, thank you.

Thursday, October 22, 2009

Alzheimer's and stroke: Two beginnings

The warm wind tossed the fading leaves, still rich with Mother Nature's brilliance, on the quiet road back to the spacious and sprawling one-story structure. The sun snoozed behind the clouds, yet emitted enough warmth to make this a beautiful and comfortable fall day, enough to make it memorable before cold winds intrude.

It was just a normal day at this building, called a nursing home by some, healthcare facility by others, simply home to yet others. Despite the usual daily routine, everyone had a tale to tell. However, I knew the "rest of the story" behind two of the stories on this day, both of which I choose to call "beginnings."

The first beginning featured the celebration of determined and slow, but steady, progress in recovery from a stroke. The woman had a massive stroke about a year and a half earlier. She's now engaged in trying to recapture her ability to speak and walk as her feisty attitude leads the way. Her face speaks volumes with smiles and eyes that roll when someone says something silly. She and her family are mastering the skills of transporting her in and out of the van under the careful eye of the physical therapist. Once she is inside, everyone is pleased, and as she goes for a ride, her grin replaces the lazy sun.

Every day will be a new beginning for this woman as she relearns the basics of everyday life to reach new definitions of independence. She and her family understand the reality of a stroke and how she'll be recovering and gaining a new experience every day of her life.

The second beginning featured the journey that another family had been dreading, the day in which their loved one, the patriarch, husband, dad and grandpa, could no longer be cared for at home and had to settle into these new surroundings. Alzheimer's had assaulted him and the entire family. That horrid disease had continued to destroy this man's brain to the point where he refused to cooperate in the simplest chores of everyday life, and the family's energy and efforts had finally succumbed to exhaustion.

Every day will be a new beginning for this man who has no memories of the love of and for his family and friends. His family understands the reality of Alzheimer's and how its cruel grip continues to rob him of something every day of his life.

The first family has started a new chapter in saying hello, while the second has begun the newest chapter of saying goodbye.

And the ink will continue to flow.

Thursday, October 15, 2009

The cruel voice of Alzheimer's

A caregiver shared with me this short, yet sad, description of a recent evening with her husband who has Alzheimer's:

"He asked for quiet last night - he was tired of my voice - so shut up. I did and turned the lights and TV off at 7."

Yep, persons with Alzheimer's may throw those kind of curves at you when you ask the simplest of questions, "Are you okay?" or say "That was interesting" or "Let's eat some dinner" or even "Hello."

Sometimes you speak to hear a human voice, satisfied even if it's only yours.

Often I get tired of hearing motivational speakers tell us that we completely control how we respond to outside stimuli, you know, what people say and do. Yes, we can filter out a lot of junk and should, but some slips in when we least expect.

We can rationally blame the disease, but it still hurts at a point far deeper than we can fathom. It's that darn result of being human.

So, if the person with Alzheimer's wants quiet, give it to 'em. You can accept it as a gift to allow your own mind to rest after a long day … Or you can close the door and go somewhere else in the house and do whatever you want.

It's okay no matter what YOU decide.

Wednesday, October 14, 2009

Cursing the mention of Alzheimer's

Could Dr. Alois Alzheimer have ever imagined how much we would curse the disease he identified a century ago, the very one that bears his name?

What a way to be written up in history books.

However, we should thank him for recognizing it as a disease of the brain, something that shouldn't warrant being thrown in an insane asylum, a prison cell or the corner looney bin, where many individuals many years ago ended up.

At the same time, we are totally confounded how the human brain can dissolve into chaos amid the deep caverns that keep brain cells from communicating with each other in the completion of everyday actions we take for granted … forgetting the need or urge to go to the bathroom and totally oblivious to the waste that can suddenly fill and overflow protective garments …unaware of the mechanics of and need for personal hygiene by showering or bathing, brushing teeth or rubbing both hands together to wash them … forgetting the lessons of how the tools of eating are handled or what role they even play …

And the list goes on that multiplies the heartbreak and sorrow of caregivers.

It's okay to curse Alzheimer's … and then pray a thousandfold longer for a cure.

Monday, October 12, 2009

Stroke and the magic of music

Life is but a song …

How true that 1800s bit of prose is when it comes to the magic of music in stirring something so deep and precious within stroke survivors. I've witnessed how the beating drums in the circle of survivors and caregivers at Retreat and Refresh Stroke Camp, born here in Peoria, IL, miraculously awakens the complex components of the brain to bring forth song from lips that have trouble speaking ordinary words.

I have learned so much from observing music therapist Susan Bock in action as she pulls the self-proclaimed musical and non-musical campers into a circle of sound that reminds us of the unique rhythm of life that literally keeps us alive as our heart seems to ease or quicken its pace, depending on the beat. Even if you adamantly claim you ain't got no rhythm at the start, you have by the time the final note echoes. Susan knows all the theory and correct terminology behind it. I just know what I like and see and hear in this particular circle of life.

I witnessed something even more amazing the other day when I observed Susan in action working one-on-one with a stroke survivor. The basic extent of this survivor's vocabulary has been "Yes yes yes" and "No no no" or shorter versions thereof. During a half-hour session, I listened to this survivor actually sing some of her favorite songs, proclaim that she was "going to eat, eat, eat a banana" or cucumber, eggplant, pepper, apple, orange and lemon as she shook the food-shaped shakers in rhythm.

Wow. I had those kind of goosebumps that give you bigger goosebumps when you fully comprehend what you're viewing. It was thrilling to hear her regain her voice that her family has longed to hear again and to see the smile they had missed during these months of recovery. She still has a long road to regaining the ability to talk and walk, but imagine how her own melody will gain in intensity and give her the motivation to bring her body back into harmony in the movement of life.

Now, she'll likely never be the way she was before the stroke. However, I have a feeling she'll blossom into someone even more special as she works to rebuild her world with the determination and faith stroke survivors must bring with them every morning. And that's why there are angels like Susan to pave that path with compassion and understanding.

In this case, the song is the key that opens the door to a new life after stroke.

Monday, October 5, 2009

A letter to insurance companies about the real cost of Alzheimer's

Dear insurance companies,

I have an important question for you: why will you pay much higher medical bills for a caregiver who is hospitalized because his/her health has been nearly destroyed by being a full-time caregiver, but you won't pay for the person with Alzheimer's to be admitted to a care facility unless they've been hospitalized for 72 hours?

The person with Alzheimer's is not totally incapacitated yet, according to official definitions, but this individual doesn't ask "What's for dinner?" They don't remember to eat without reminders and meals being set in front of them. And more frequently, they'll stare at the silverware and wonder what to do with it. And they forget what "going to the bathroom" is all about and don't even notice when they've "gone." Thank goodness for incontinence products.

They start to fall more often, which will cost you more than an arm or a leg if they end up in the hospital with a broken leg, hip, etc. They can't handle physical or occupational therapy to improve because their brains don't understand or remember the most basic of movements or what they were asked to do a minute before. And the caregiver can't pick up or move this person by themselves anymore because caregiving has wore them out or they're prone to injuries that will require hospitalization or therapy or rehab or whatever.

Cha-ching. Cha-ching. Cha-ching.

Now, what was my original question …

Oh yeah, I know it's not cheap, but what will it cost you in the long run? Knowing their loved one is under constant supervision and is safe buys families a lot of peace of mind, which keeps them healthier and able to maintain their own levels of independence for a much longer time.

Is this part of the health care debate? Who knows anymore with all the meaningless and angry rhetoric being tossed around in public debate. No, wait, it's not public debate; it's public hate.

Give that some thought and get back to me when you can. Oh, and please make it easy enough for sleep-deprived caregivers to comprehend.


Friday, October 2, 2009

Don't let Alzheimer's make decisions for you

I want to tell you a story …

The full-time caregiver of a person with Alzheimer's has to go to the emergency room because she's suffering so much back pain that she can barely move without screaming. She can't get to her physician's office during regular hours because her adult children, who have demanding lives of their own, have to work during the day and can't come by the old homestead to take care of Dad while Mom goes to the doctor.

Now, don't blame the kids for being heartless or lacking compassion, because Mom doesn't tell her kids about her back pain during the day. She doesn't want to worry them or take them away from their jobs because they're honest, hard-working folks who have mortgages and car payments like most of us. They've already taken several vacation days thus far this year to help give Mom a break in caring for Dad at home, because there are countless families out there that believe in caring for their own as long as possible. They don't want to rely on others.

Dad can't remember their names … rarely speaks anymore … looks puzzled at the seatbelt when he gets in the car … doesn't understand that everything in the grocery store isn't his to grab and eat or open to see what's inside … has no idea why there's a dog in the house (that's been there for 10 years or so) … forgets what a toilet is for … and has to wear Depends 24/7 because he has no clue what his body is releasing … You get the ugly picture that this family faces every hour, every day.

Love and many, many prayers to God keep them going.

Now, back to Mom's back. One of the kids comes by after work and discovers Mom in great pain and asks why she didn't call one of them sooner. Well, you know Mom; she didn't want to bother anybody; she's stubborn; she's trying to calculate how much the insurance will or won't cover; she's sure it's just stress and the extra physical and emotional exertion she's had to bear in caring for Dad's growing needs.

Well, while one kid stays home with Dad, the other takes Mom to the emergency room. She's admitted to the hospital because she's got some serious spinal problems, not just some muscle strain. This family has to make some quick and hard decisions. What will they do with Dad because Mom isn't coming home tomorrow …

I tell this true story as a reminder that EVERY family that has someone with Alzheimer's needs to plan for the worse, when the caregiver can't give care for a day or a week or a month or, heaven forbid, forever.

Don't let Alzheimer's make decisions for you. Start planning from the moment of diagnosis because tomorrow comes far too fast.