Why You?

Often one person in a family becomes the caregiver and the others go on with their lives as before, offering little or no help.

Why did you decide to be the one who gives so much?

In my case people were surprised to discover that I was a caregiver for my father-in-law. “You mean he’s not your father?” they would say. Surprise evident in their tone.

They were even more amazed when told he was my husband’s stepfather and not a blood relative to either of us.

“Why would you do this? You must be a saint.”

I am no saint. I am simply a woman who saw a family member in need and did my best to help. I didn’t know how hard it would be or how long it would last. How could I have known? But even if I had I would not have changed a thing.

Some day I will need help and I hope someone will be there for me.

Families are not created only through DNA. We marry, we bear children, we divorce and remain connected. Families feud over things big and small and still  remain connected.  We create unique families through adoption, friendship, and commitments of all kinds.

Through this blog I reach out  to offer support and understanding. To let you know you are not alone, that you are part of a vast family of caregivers.

Why did you decide to join this tribe?

 

 

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Show Don’t Tell – A Writer’s Advice For Caregivers

For writers, show don’t tell is the difference between: “John was being aggressive. Jane was frightened.”

And: “Stop! It’s me, Jane. I’m your daughter.” Jane ducked as the antique lamp whizzed through the air, missing her head by less than inch.

In the first example family members are left to fill in the details of what is going on. In the second one we see that John is out of control and Jane is in real danger. We feel for her and we want to help her in some way.

Showing your distant family members what you are dealing with on a daily basis may elicit a very different response than your telling them about the vile language your mother spews at you when you try to get her to eat. Or how she refuses to bathe or change clothes and hits when you try to calm her. They insist that the sweet woman they know would never act like that. You must be making it up.

You could provide example after example of the chaos dementia causes. How exhausting it is to be sleep deprived for months. How mean someone who raised you can be. How desperate you  are for a bit of understanding, a moment of peace and still they don’t get it.

So often I hear caregivers say, “Only someone who has done this can really understand what it is like.”

It’s true. What dementia does to a person cannot be expressed in mere words. So what can you do?

Show them.

Use the video camera on your cell phone as a way to communicate with your family. Brief clips of every day behavior can be emailed in moments. Show the anger and aggression, the refusal to eat and bathe. Let your family see what happens when their loved one is hallucinating and how dangerous things can get. Show your family how hopeless you become. How much you need help and understanding.

Nothing I suggest works for everyone  but at least your family will have seen for themselves what it’s really like to be a caregiver. It can’t hurt. Might help.

 

 

 

Fireworks and Sundowning, Not a Happy 4th Of July

As if sundowning weren’t enough of a challenge for those with dementia and their caregivers we add fireworks to the mix on this day.

Here are a few suggestions that may help make things a bit less stressful for you and your family.

  • Talk to the person in your care about the holiday and what it means to him or her. Listen to their stories of picnics past and how they showed their pride in their country.
  • Encourage them to talk about fireworks. Were they exciting and fun or too loud and scary?
  • Even someone who once loved fireworks may react very differently now. For veterans the effects of sundowning and the popping sound may bring back the trauma of battle. In either case it helps to prepare before the explosion of sound and light begins.
  • If you live near a place where you see and hear fireworks from your home you should prepare them for what will happen. They may not remember later but you never know what will help on day like this and it’s worth a try.
  •  Early in the day may be a good time to show them a video of fireworks. Here is a link to many of the displays available for viewing on YouTube http://bit.ly/2tHZa1q. Turn the sound off before showing it to the person in your care.  Explain that they may see these lights in the sky later that night and you will sit with them until it’s over.
  • If even the silent display is upsetting, close the blinds and drapes in their room before sunset to block out the flashing lights. Play music he or she likes using ear buds or head phones if possible to mask the noise. If these devices are not available or practical in your situation, play the music any way and sing or dance along with it to distract them, they may even join you.

I hope these tips help, they are among the things I did as a caregiver. Sometimes Dad was fine and other times  the 4th of July was a very long day indeed.

If you have a hint or suggestion that may help others, please share it here.

 

 

 

Bath Time In Dementia Land

Does this sound familiar?

“Dad, it’s time take a shower.”

“No.”

“Come on, really? You haven’t washed in over two weeks.”

“Not true. I took a bath yesterday.” (He didn’t, he only thinks he did.)

“How was it?”

“Wet and cold.”

“I’ll make sure the water is nice and warm. I’ll even put the towels in the dryer so they feel nice when you get out.”

“People don’t have to take a shower all the time. You think a bath is so great you take one.”

“I did. Don’t I smell nice?”

“Who cares about smell? Women smell nice. Men smell like they smell. All my life I work hard.”

“Yes, you did. And after working hard you washed yourself.”

“In the Old Country I took a bath on Saturday night. Had to be clean for church on Sunday. My mother always had the hot water ready.”

Hearing Dad talk about the Saturday night ritual in Italy as he was growing up gave me an idea.

“That’s right,” I said. “Saturday is the day to get clean for church in the morning. I forgot.”

“I remember everything. It’s a good thing I’m here,” he huffed. “I watch the news now.”

Yes, it’s a very good thing you are here,” I replied.

That evening, after helping him eat his dinner I warmed some towels, put the shower seat in place and turned on the water in the shower. Once it was nice and warm I entered Dad’s room.

“What’s up?” he asked.

“It’s Saturday. Time to get cleaned up for church tomorrow. I have the hot water ready.”

“It’s a good thing you didn’t forget. My mother always said, “Cleanliness is next to Godliness.”

I helped him rise and pull his T-shirt over his head and said a silent thank you to his long deceased mother for the night before church routine she instilled in him so many years ago.

After that, whenever her needed a bath or a shower it became a Saturday in our house no matter what the calendar said. And even without going to church the next day, my prayers were answered. Dad was clean again.

Early in his time with us Dad would always take a shower and shave before seeing a doctor. Later, when he began to balk at the Saturday night ritual, I’d tell him his doctor wanted to see him in the morning. Soon after taking a shower he would forget what I’d told him and was content watching television in clean pajamas.

Another caregiver I spoke with told me about someone she cared for who had spent their entire career in the military. Being told an inspection was scheduled for the next day always inspired him to make sure his room and his person would pass muster.

Not everything I tried  worked every time. However, I really appreciated the times when something I did resulted in even a very small success.

Was there a recurring occasion or event when your family member always wanted to look his or her best? If so, please share it here. It might help you and another caregiver avoid some of the intense stress that often happens at Bath Time in Dementia Land.