Blessed Are the Caregivers

Merry Christmas!

Nativity with angel

When the Son of Man comes in his glory, and all the angels with him, then he will sit on his glorious throne. Before him will be gathered all the nations, and he will separate people one from another as a shepherd separates the sheep from the goats. And he will place the sheep on his right, but the goats on the left. Then the King will say to those on his right, ‘Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me..”Matthew 25:31-46

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Lewy body Dementia Has Symptoms Worse Than Alzheimer’s

The following is an excerpt of an article that first appeared in the Washington Post on December 16th.

Written By Candy Schulman

My mother’s greatest fear was Alzheimer’s. She got Lewy body dementia, or LBD, instead. This little known, oddly named, debilitating illness afflicts an estimated 1.3 million Americans, the actor and comedian Robin Williams possibly among them. It is often misdiagnosed because its signs, such as hallucinations and body rigidity, do not seem like those of dementia, but in the end it robs people of themselves even more painfully.

I first noticed my mother’s cognitive difficulties when she was 88. Until then, she’d led an extraordinarily active life: She was a competitive golfer with a bureau full of trophies, a painter and a sculptor. Every Hanukkah she hosted a lively feast for her eight grandchildren and nine great-grandchildren. This time, though, she needed my help planning, shopping and cooking. She was having difficulty with the guest list, trying to write every family member’s name on a piece of paper, adding up the numbers to see how many potatoes to buy for latkes. Her concentration became frayed and she kept ripping it up and starting again, close to tears.

Several months before that, she had sent me a Mother’s Day card that was illustrated with childlike prose, colorful illustrations and glitter hearts. The poem on the cover was printed in a playful purple font: “For you, Mom. For kissing my boo-boos, for wiping my face. . . . For calming my fears with your loving embrace.” On Mother’s Day and the rest of the year, Mom added in a shaky script, “thanks.”

To read the complete article click on the following link http://www.washingtonpost.com/national/health-science/lewy-body-dementia-has-symptoms-even-worse-than-those-of-alzheimers/2014/12/12/a0ca05a0-69a9-11e4-a31c-77759fc1eacc_story.html

***

I sometimes wonder if my father-in-law, Rodger, had Lewy Body Dementia. The symptoms fit. He had Parkinson’s disease, dementia,and  hallucinations. However, he also had a life-long history of schizophrenia so the hallucinations and delusions were not new. There is a family history of Parkinson’s disease so it’s not surprising he developed that. The doctor diagnosed him with age-related dementia, a catch-all name that didn’t  really tell us anything other than his ability to reason was becoming even worse. The truth is, we will never know if he had Lewy Body Dementia, Alzheimer’s Disease, or any of the other forms of dementia. We do know he was very sick and millions more are affected every day. So, it’s important to share as much information as we can about these diseases and do everything we can to bring attention to them. For that I thank the Washington Post and Candy Shulman for sharing this story.

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On God and Santa

santa list

When I was a little girl I thought Santa Claus and God were a lot alike. First there was that “making a list and checking it twice” song to let us know that Santa was watching “to see who’s naughty or nice.” Then Sister Anne told us God has a big book up in heaven and when we die we’re going to have to stand in front of everybody in all creation while our sins are read out loud for everyone to hear. I had to think that with a book like that someone was checking it at least a couple of times.

Santa seemed be easier to please than God. He judged you on an annual basis and on Christmas morning you knew how you’d done that year. If you were real good you got everything you asked for. If you were real bad, you got nothing. I always landed somewhere in the middle. I never got everything I asked for, but I never got nothing either. I usually ended up with one or two things from my list and some other things that were nothing to write home about. Then there were the socks and underwear that came as a warning to do better in the New Year. I figured he must have checked that list and seen me trying to peek at some answers on a math test or watched me picking on my little brother. He also seemed to know I always tried to do better and found it in his heart to give me a bit of credit for that. I figured that’s how I got my first pair of roller skates.

face of God

God is tougher. He expects you to be good all the time and if you can’t quite pull it off, he wants you to tell on yourself. That’s what they call ‘going to confession’ in my church. Then you have do penance and pray for your immortal soul. There are no presents to let you know how you’re doing. Confession was always a problem. What if I forgot something? What if He looked away when I was good and didn’t see how hard I tried? Even a pair of socks would have been some indication of how things were going. I thought God should have a chat with Santa.

During Christmas things got all mixed up and everybody went a little crazy. Jingle Bells and Away in A Manger competed on the stereo. Santa images appeared everywhere. Baby Jesus was getting ready for his birthday and his straw bed was right up there at the front of the church and at home we placed it under the Christmas tree with the sheep and the cows, the chipped wise men and one shepherd with a broken staff. Mary prayed and Joseph stood guard over all of them.

In the midst of all this I heard about some kid seeing his mommy kissing Santa Claus. Imagine something like that happening when everyone is expected to be on their best behavior. It was enough to drive a kid to distraction.

Right after that, we had to practice for the Christmas pageant and get into a solemn state worthy of Our Lord. I tried. However, even with the best intentions I never managed to behave well enough to be considered for the part of Mary. I did manage to be a pretty good sheep once and from that success I moved up to play a well disguised wise man the following year.

As I look back on those innocent years, I realize that as adults we feel the same pressure to be good, to answer to more than one standard at the same time. We grow distracted and fail to see Him in the stars, the morning sun, or the loving eyes of our spouse. We no longer notice the prayer in a child’s laugh or a loved one’s crooked smile. It’s because of times like these that God reminds us to think of others.

It is through Him that we opened our hearts long ago and created a joyful old elf to carry His message. That is why God and Santa look alike to an innocent little girl trying her best to prepare for when the time comes to check that list. Faith comes in many forms but always at the heart of it is a message to try to do your best, to appreciate the gifts that life offers and share our love with family and our community.

Now when people complain about how commercial the season has become, how gifts and parties have taken over, I smile and look into the face of Santa, and I see Him there, smiling back at me with all the love a father holds for a child trying hard to be good.

Merry Christmas Caregivers!

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Thunderclap Goal Reached. Thank You!

Thank you everyone who signed on to support my Thunderclap campaign, Family Caregiver Tells All.  Yesterday the campaign reached the required 100 supporters.

On December 21st a message will be sent to 45,296 people telling them about Confessions of an Imperfect Caregiver and help raise awareness of what it’s really like to be a family caregiver.

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Brother Where Art Thou?

Questions Caregivers Would Ask  Family Members If They Dared

Why aren’t you here more often? What gives you the right to question and demand answers about how diminished he’s become when you only come by once or twice a year?

Why don’t you call once week or even once a month if you’re concerned?

What? You’re leaving on vacation and will be gone for three weeks? I haven’t had a vacation, or even a day off, in five years. Hell, an hour to myself would be a treat.

How is he? What do you mean, how is he? He’s sick. He has dementia and Parkinson’s disease. He can’t swallow anything but pureed food. He forgets where he is. He forgets who we are. He’s failing fast. You should stop by and see him before you go away. Will you?

You have too much to do to get ready for your trip? You’ll call when you get back? If he needs anything while you’re gone give you  want me to a call on your cell phone?”

And if I call what will you do? Will you interrupt your trip? Will you come home early to care for him? We both know the answer to that. You already paid for the hotel. There will be a big fee for changing your airline tickets. It doesn’t make sense to rush back when there is nothing you can do for him.

There’s nothing you can do for him or nothing you choose to do for him? Where are you when he misses you? Where are you when he’s in the hospital again? Where are you when he’s tired of dealing with me and we both need a break?

Where are you when the sun goes down and he gets combative?

Where are you in the middle of the night when he sets off the bed alarm every few minutes from dusk to dawn?

Where are you when the doctor asks is there is anyone else to help care for him because it’s clear the stress is taking a huge toll my health?

Where are you when refuses food and drink? Where are you when he takes his last breath?

Brother Where Art Thou?

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Brother where art thou and where will you be when I can’t do this anymore?

 

Thunderclap to Increase Awareness of Caregiving

I am starting an online Thunderclap campaign to raise awareness of my book Confessions of an Imperfect Caregiver and I need your help to garner 100 supporters by noon on Dec. 21st.

What is Thunderclap? It’s a platform that allows people to pledge a Facebook message or Tweet message that is concentrated and unleashed all at the same time. Think of it as a massive flash mob on social media. It is completely safe and will post exactly one message on your behalf.

It takes about 5 seconds and here’s all there is to it. Click on the link http://thndr.it/1ug3Npt  and you will see a message asking you to click on a tab to support me via Facebook, Twitter, or Tumbler. Choose one or all of them and you are done.

Please share this message with your friends and family and ask them to support me too.

Please support me in promoting the Thunderclap Flash for Family Caregiver Tells All  to  help increase awareness of my book, Confessions of an Imperfect Caregiver, The link is http://thndr.it/1ug3Npt   My time will be at noon on Dec. 21st, but only if I get 100 people to sign in to the link and support me. Thank you everyone!

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