Sunday, November 25, 2012

Bittersweet Holidays

Dad, with his nephew, Gary.

Brighten up a senior's holidays by visiting them this holiday season. It will be a precious gift.

"The holidays are bittersweet when a family is struck by Alzheimer's disease. It's a time for caring and sharing and reflecting on the year that's past and the year to come – and with Alzheimer's, the future is tough to face. But there are some bright spots.

People with Alzheimer's, more than anyone else know how to live in the moment. For just an hour, an afternoon or day, joining with your loved one in that moment can make for a very special holiday."

Excerpted from "The Gifts of Giving", Dementia and Alzheimer's Weekly
Full article here:

Tuesday, November 20, 2012

Get over it!

I hung the Christmas wreath on the front door tonight and was about to post a "Let the holidays begin" remark on Facebook, but then I stopped myself. It sounded too...flip? cavalier? And that's the last feeling I'm having about the holidays this year.

This will be the first major holiday that we won't be able to bring Dad home from his residential care facility to be with family. He just isn't up to negotiating stairs and strange rooms and commotion and big meals. And although I know it's the right decision, I feel incredibly guilty about it.

We'll visit him, of course. It just won't be in the traditional manner. But we'll make it the best that we can. For him. And for us.

Thinking about this makes me also think about all the residents I know at Dad's facility who have no one to visit them on the holidays, or any day. Oh, they have family, many of them do, anyway. The family just doesn't visit.

I understand how hard it is. I understand that it's heartbreaking to only see the shell of someone you love. I understand that it's even harder to see them decline with each visit. I understand that it's hard to leave your merry-making on a holiday and go to a place that's not so merry and bright.

But you know what? Get over it.

You think it's hard for you? Think about your loved one. Put yourself in their wheelchair. Wouldn't you want to know (and I think deep down, they do) that someone cares enough to take time out of their day to visit you? To wish you well? To hold  your hand or hug you with joyful holiday wishes?

Get over yourself. You want true holiday spirit? Go visit someone in an assisted living or nursing home for the holidays. Even if it's depressing. 'Cause you know what? That's got the true meaning of Christmas written all over it: Love.

Show a little to the forgotten ones this holiday season. You will feel blessed.

I promise.

Sunday, November 18, 2012


“Think how you love me," she whispered. "I don't ask you to love me always like this, but I ask you to remember."

"You'll always be like this to me."

"Oh no; but promise me you'll remember." Her tears were falling. "I'll be different, but somewhere lost inside me there'll always be the person I am tonight.”

― F. Scott FitzgeraldTender is the Night

Love and Laughter

Every day with Alzheimer's has its ups and downs, and this is Dad on a really good day.

He still has his mischievous smile that lets us know he's about to say something to make us laugh. I'm so thankful that he still retains his sense of humor, even if it is in a limited capacity. The fact that we can be silly together, and laugh, and tease each other, makes the days easier to bear. I don't know how families handle it when the disease turns their loved ones into nasty, angry, spiteful people...and it does happen. Often. What a great burden that must add to their already heavy load.

Dad has a habit of cracking everybody up in Memory Care. He once told an aide, "I can't even remember my own name. How am I supposed to get a date?"

Sometimes he cracks himself up so much that he can't stop laughing, which of course makes us laugh all the more.

I know someday I will look back and really cherish these good days. And I will remember that even in the midst of this horrible disease, we found things to laugh about.

I call that a win.

Sunday, November 11, 2012

Friday, November 9, 2012

Pizza, but no party :(

Not a good day at Dad's today, despite the fact that it was pizza day and Dad was in a good mood. Sis and I arrived bearing four large pizzas for the residents in Memory Care (MC) only to find the dining room torn apart for floor cleaning: the chairs pulled out of the room, the vacuum running, a mop and pail standing nearby. Um, pizza party, guys. Remember? The second Friday of every month? Always at three p.m.?

The MC supervisor was off today so there were only two aides on the floor. This is never a good thing when you have sixteen residents in the unit. Many of these residents need two people to assist them when they go to the bathroom, which means the other fifteen residents are left on their own for long periods of time. Today was no different.

Sis and I watched (and assisted) one very frail woman who was repeatedly trying to get out of her wheelchair. If she had succeeded, she would have been badly hurt as she cannot stand on her own. If we hadn't been there to help her, what might have happened? Dad also tried to get up and walk on his own because he needed to use the restroom, but we were able to keep him in his chair until we got help. All told, there was probably a good hour there where no one was available to check on the residents in the dining room.

These things happen a lot and yet management will tell you that there is no need for another aide on the floor in the MC unit. They are meeting the requirements set forth by the state and that is sufficient to them.

It's not sufficient to us, nor to the other family members we talk to. But how do you make a corporation -- or for that matter, the state -- listen?

Yep, a frustrating day all around. One of many.

Monday, November 5, 2012

National Alzheimer's Disease Awareness Month

November is National Alzheimer's Disease Awareness Month and National Family Caregivers Month. In the United States alone, there are nearly 15 million Alzheimer's and dementia caregivers.

God bless the caregivers and those they care for. It's a long, hard road.

Thursday, November 1, 2012

Just do it!

This is something I've been thinking about a lot lately. Because of Dad's illness, my sister and I have gotten to know a lot of people in our position (taking care of an elderly parent), as well as a lot of people who themselves are struggling with disease and/or dementia. I think this speaks for a lot of them, and it comes from a place of love, but also frustration.

Note to families and friends:

We (the patients and caregivers) hear it all the time; that well-meaning, but vastly over-rated, sentence: "If you need anything, call me." Or, it's close counterpart: "If I can do anything, call me."

Well, you know what? If you want to do something for a burdened friend or loved one, just do it. Don't put the onus on them to ask. They are burdened enough. And there is a matter of pride involved. Nobody likes to ask for help. Don't put them in the position of having to do so. Seriously.

If you want to help, show up on their doorstep and announce you are going to make dinner. Better yet, stop by with a couple of casseroles and drop them off. Spend an hour at their house doing a couple loads of laundry. Call when you are on the way to the grocery store and see what they need. Send flowers to brighten up the patient's room. Run the vacuum and do a little dusting for them. Bake a cake.

If you want to do something, do it. For those who are in the trenches, words without action are pretty meaningless. And it is hard, so very hard, to ask for help.

Everyone wants to feel strong and self-sufficient. Help your loved ones keep their pride.

Just do it. (You'll be glad you did!)