You Don’t Have to be Saint

selflessness

During the time I was a caregiver and even now, after reading Confessions of an Imperfect Caregiver, people tell me I must be a saint.  Always I assure them that I am not now nor I have I ever been saintly. Rodger would have been one of the first to agree with me.

None of us are saints. We are people dealing with dreadful situations brought on by terrible diseases. There is reason to be angry and resentful and less than perfect.  There are even more reasons to quit. To walk away and let someone else deal with it. There is only one reason to carry on. Someone we care about needs care. It’s as simple and as complicated as that.

Maybe there is no one else is able to do it. Maybe no one else is willing to do it. The reasons are many.  But you are the one doing it and you are the one putting the needs of another before your own. That is not saintliness. There is no expectation of perfection or being prayerful or holy.  That is selflessness.

Selflessness is what keeps you going in all your glorious imperfection. Making it up as you go along. Stumbling and picking yourself up as you do the best you can.  Reaching out to the person in your care at the start of every new day. Yes, you are the embodiment of selflessness and probably no more a saint than I am and that’s a very good thing.

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Good Morning Caregivers

 

go quiet when things are hard

So often as a caregiver I felt overwhelmed. What did I miss? What could I have done different? Where did I fail him? I’m quite sure you are not much different.  I’m not going to tell you not to feel that way. It won’t change anything. It seems that second guessing ourselves is part of living with these terrible diseases. What I hope to do is help you through it. One the hard days, and there are many, try to remember this, “more action is not needed to create order and peace.”

Go quiet, even if it’s just for a moment, and know you are doing the right thing,

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Good Morning Caregivers

love is whqat you do

Caregivers, remember what you do every day is LOVE. Love isn’t perfect, love isn’t easy. LOVE is who we are for those in our care.

1 Corinthians 13:13 And now these three remain: faith, hope and love. But the greatest of these is love.”

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Up the Down Staircase

alz up the down staircaseOften Rodger would say to me or my husband, “It don’t make sense.”

He was right. This disease turned his world and ours inside out and upside down. Going up the down staircase was the only thing that did make sense. If we tried to approach the situation with logic, chaos ensued.  Throughout our lives we are told to live in the moment. Mental illness and dementia made that imperative. We abandoned our reality and went into his feeling as lost as he did.

Many times he told the doctors that I was crazy. We thought the same of him. Who was right? The answer depended on the day. He had moments of clarity so crystal clear I sometimes wondered if he had been pretending much of the time. I had moments when I lost it so completely I was convinced I had gone over the edge and might never find my way back.  Still we carried on. Step by step, day by day, we resumed our proper roles and began again the trek up the down staircase. Each a little bit crazy in our own way.

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Good Morning Caregivers

 

 

not all heroes wear uniforms

You are my heroes, every one. Thank you for all you do for others.

 

 

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Because Your Loved One May Not Be Able to Say It

When I Count My Blessings

Today when my family and I hold hands around the table I will count every one of you among the blessings for which I am thankful. Without you so many would be lost.

Blessed be everyone.

 

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NaBloPoMo November 2014

Lead Me to The Rock

lead me to the rock psalm 61 2

Sometimes prayer was the only thing that got me through the long days and nights of caregiving. Too much stress, too little sleep, very little help, all piled up and sapped my strength and I turned to prayer. In one form another my cry was always the same, “I need help. Please send help.”

And He did. In His time and in a way that may have been unexpected, help arrived.

For all the caregivers close to the end of their stamina, I send out this prayer.

“Hear my cry, O God; attend unto my prayer.

2 From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I.”

A blessed Sunday to you all.

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NaBloPoMo November 2014

 

You Have to Eat Something!

Eating was one of Rodger’s few pleasures in life. Severe Dysphagia robbed him of the ability to enjoy his favorite things like pita bread and big juicy oranges but mealtime was still very important. He watched the clock and started asking for his tray at least fifteen minutes before he really wanted it. Schedules were to be kept to the minute or his stress levels would rise. Over time he ate less and less and began losing weight. Then the day came when he pushed the plate away and refused to take in a single bite. I took it away thinking he would eat it later. He didn’t. He seemed to lose interest altogether.

He had to be hungry. Didn’t his body insist on sustenance? What was going on? When I was able to cajole him into taking a few bites it felt like a victory for me. By his response I knew he felt just the opposite. This woman is forcing me to do this and I don’t like it.

Almost every day caregivers are saying the same thing. “My loved one won’t eat. What can I do?”

I tried everything I could think of to get more nutrition into him. I wish I had known about how the color of the plate I was putting the food on could have made a difference.

Recently I came upon the following quote and it made me stop and think.

“If you couldn’t see mashed potatoes would you eat them?

red plate

There are many posts and articles online that suggest that red plates are they way to go. Other colors have been suggested as well, including blue and yellow. I had to wonder if one color was better than another, and if so, why?

Then I ran across a post on Home Sweet Home Care, Inc. that strongly suggests that color, contrast, and plate size can make a difference. It states in part:

 “We Are Influenced by More than Plate Color

“So the full story, according to this newer study, is that how much one consumes is highly influenced not only by plate color, but also by plate size and even the background (tablecloth) the plate is placed upon. Thus the solution suggesting that you use red plates for dementia patients is only accurate if you are serving light colored foods, such as mashed potatoes. Whereas fresh tomatoes, strawberries, and tomato soup, which are themselves bright red would be better served on white or bright non-red plates. Serving these foods on red plates would not increase food consumption because there would be insufficient contrast between the food and the serving dish.

Now keep in mind that this technique of serving food that is in high contrast with the plate it is being served upon (or cup/liquid) is a method that helps those who are having difficulty seeing. Clarity of vision often plagues the elderly and those with Alzheimer’s. So increasing the contrast between food and the item it is being served with will assist them in both seeing and consuming the food or liquid. As the original article touting red plates for dementia as a solution stated, “if you couldn’t see your mashed potatoes, would you eat them?” So Sometimes choosing a red plate for dementia patients is the right choice.”

I thank the author for posting this advice and hope that it helps make life a little bit easier for you and your loved ones.

To read the full article go to: http://www.homesweethomecareinc.com/caregiver-helpers/red-plates-for-dementia/

 

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For Caregivers in Buffalo, N.Y.

all entitled to a meltdown

For caregivers in Buffalo, New York and the surrounding area here is a reminder that meltdowns are not only okay, sometimes they are exactly what is needed in order to carry on.

Any change in routine can wreak havoc for our loved ones. I can only imagine what seeing snow piling up for hours on end and having it cover windows and doors, creating a feeling of being trapped. is having on loved ones with Alzheimer’s disease and dementia. I pray that you have all the medications and all the supplies for everyday living that you need, that there will be no medical emergencies that require you to leave your homes, and that your loved ones remain as calm as possible.

And one more thing; if things become too stressful let it out. As singer, Leslie Gore, once said,

“It’s my party and I’ll cry if I want to.”  https://www.youtube.com/watch?v=XsYJyVEUaC4

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NaBloPoMo November 2014

The Face in the Mirror

Caregiver in the mirror

Image Courtesy of the Caregiver Space

Reflections on Caregiving

by Bobbi Carducci

The face in the mirror evolved as you did. When you came to live with us I gazed on eyes full of hope. In my care you would do well. When you needed anything, I would provide it. We would share our stories and laugh or cry when feelings overcame us in the telling. For a time we did well.

Everything changed.

The face in the mirror reflected worry lines etched deep into my forehead. What was I doing wrong? Day by day, month by month, you slipped away. Would you know me today? When your memory left me behind, where did you go? And when, if ever, would you be back?

Time passed.

Eyes rimmed in black stared back at me. No sleep. Constant stress. You needed all I had to give and more. What we were to do, the two of us? We were at cross purposes fighting the same battle. You were determined I would not win. Every night I cried.

You are gone.

The face in the mirror is forever changed. In your living and your passing you left your mark on me. All the fear and loss, hope, love and laughter are reflected in my eyes. Every night I pray for you and hope you do the same for me.

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