Tag: Christmas

#MerryTwistedChristmas, Part 2 of 2

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By Samra Bufkins

December 27, 2015

This is a follow-up to yesterday’s blog about a little scare we had on Christmas Eve.

christmas-tree-1185455I was not surprised to read several articles the week before Christmas anticipating increased calls to Alzheimer’s help lines and organizations. There are plenty of articles preparing families, guests and caregivers for the holidays, but if somebody hasn’t seen Grandpa or Mom in a while the changes can be shocking, especially if that family member is still in denial or simply uneducated about the disease. Alzheimer’s charities in the UK expect a 60 percent rise in calls after Christmas because family members who haven’t seen their loved one in a while become alarmed at the dramatic changes they witness.

In many cases, one family member is the primary caregiver, with others providing support ranging from regular to nonexistent. I continually hear stories of adult children blaming the healthy parent or accusing him/her of ineptitude when the parent they see sporadically deteriorates. They aren’t living with the stress of caregiving 24/7. Sometimes when they visit, their parent is at his or her best, and they see nothing beyond “normal aging.”

One friend I’ll call “Sally” said their many children thought she was making things up until each one had an individual experience with their dad—an event that occurred when they were with Dad and nobody else, especially Mom, was around to influence his behavior. Once it dawned on that child there really WAS something wrong with Dad they each came around and were more supportive.

Sometimes it’s hard to remember the patient’s behavior is the disease speaking, not the person.

Alzheimer’s is not just about memory loss

Change—sudden or subtle—can indicate the progression of the disease, a change in medications, or an underlying medical condition. It should not be taken for granted. As illustrated in yesterday’s blog, language difficulties may make it difficult for Alzheimer’s patients to express symptoms.

Everybody—especially the advertising agencies promoting dementia drugs—focuses on memory loss in Alzheimer’s. Yes, it’s sad when Grandma can’t remember you, but it’s even sadder to watch your spouse hold something in his hand and have no clue what to do with it.

That happened Christmas Day at our house. Multiple times.

Continue reading “#MerryTwistedChristmas, Part 2 of 2”

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#MerryTwistedChristmas, on to the new year

fanfare-trumpet-1427273(Part 1 of 2)

By Samra Bufkins

December 26, 2015

First, I hope everybody reading this has enjoyed a wonderful holiday season, whether you’re celebrating Christmas, Chanukah, Kwanzaa, or any other of the many holidays celebrated in December.

It seems like “the hap-happiest season of all” is fraught with stress for many people and for a variety of reasons—some self-inflicted, and some out of our control.

The hashtag in the title of this blog was used by my friend Mary Jane Mudd in a Facebook status update, and it inspired me. Mary Jane’s daughter Mackenzie has Tuberous Sclerosis (TSC), a rare genetic disease that causes benign tumors to grow on vital organs and often causes autism, developmental disabilities, epilepsy and more.

Her status update around midday on Christmas said it all:

MerryTwistedChristmas

 

I could have used that hashtag to describe our Christmas—and so could many of the families of the 5.3 million Americans living with Alzheimer’s Disease. Because the only predictable thing about Alzheimer’s is its unpredictability.

Background

Like many living with this disease, Bill goes through long periods of “stability,” meaning I can predict what he’s capable of doing and tailor activities for him (and tailor my expectations of those outcomes).

He wants to help. He needs to feel like he’s contributing. He handles the trash and recycling (not always well), kitty litter and feeding (they’ll tell him when that needs attention), and likes to make my morning tea, juice and breakfast. He can still make an awesome omelet, although lately some interesting ingredients have appeared. But I digress….

He’s very social, but lately he’s had trouble with grooming and dressing details. Before our recent church choir concert, one of the guys had to re-tie his tie so the skinny side didn’t hang below his belt with the wide part mid-chest.

School is out and his Wednesday Stepping Stones group isn’t meeting, so our routine is off. I notice he moves much slower than he once did, and it takes longer to do things that used to be done with ease and speed. But I’m accustomed to that.

What I’m not accustomed to is the speed at which things can change for the worst.

Continue reading “#MerryTwistedChristmas, on to the new year”