Preparing to Care – A Guest Post

Today, Nov. 11, 2014, I am attending the Caregiving: Taking a Closer Look conference sponsored by the Northern Virginia Dementia Care Consortium. In my absence I am pleased to share the following post written by the staff of Brentwood Rehabilitation and Healthcare.

How Families Can Prepare to Care for a Loved One Dealing with a Memory Loss Condition

by Brentwood Rehabilitation and Healthcare Center Staff

In recognition of November being National Family Caregivers Month, The Brentwood Rehabilitation and Healthcare Center wanted to share some advice for family caregivers whose loved ones have been diagnosed with Alzheimer’s or Dementia.

Family Caregivers provide many aspects of emotions, finances, nursing, and homemaking to allow for their loved ones to stay in their own homes comfortably. National Family Caregivers Month allows us to recognize those that put hard work into supporting their loved ones throughout difficult times.  Here are a few pieces of advice for those who are caregivers to loved ones diagnosed with Alzheimer’s or Dementia:

Become Well Informed

There are programs and classes that caregivers can take to learn more about Memory Loss Conditions. Also, completing your own research to gain as much knowledge about the diseases can help. There is a ton of information which can help you to prepare for the future and what you are going to encounter as your loved ones progress.

Develop a Strong Support Network of Family and Friends

Having a strong support network around you is extremely important as you become a caregiver. Keeping a support system of people you can talk to, get away for a bit with, or a shoulder to lean on helps for caregivers to handle the stress of caring for a loved one who is dealing with memory loss conditions.

Join a Support Group

Caregivers sometimes need to realize, they are not the only ones who are in this type of situation. By joining local support groups, you can gain a trusted support system, talk about your issues, and gain valuable advice about how others have coped with bringing in a loved one with medical issues.

Develop Family Roles

Many times, there are multiple people in the same house acting as caregivers for a loved one. It is important to set family roles so that everyone knows their part and what they are responsible for doing. Someone may be the driver to doctor’s appointments whereas another makes their meals and another could be responsible for their medication. It is important that everyone in the household is on the same page to decrease tension and make sure their loved one is getting the proper care necessary.

Evaluate Finances

Bringing in a loved one will create added costs to your monthly budget. Sit down with your past budget and you will realize you may need to readjust. You will have one more mouth to feed, one more person to drive, medications to order, new furniture or safety accessories to add to your house. Before you bring your loved one into your home it is important to realize what the added costs will be to understand the expenses you will face.

Plan for the Future

From the beginning caregivers have to understand that their loved ones may not be able to stay with them forever. Families need to sit down and discuss what the plans are for the future. Whether that includes part time at home nursing care, part time living situations between different members of the family, or eventually looking into care facilities for your loved ones, it is important for these decisions to be set from the beginning.

Thank you for all you do for others.

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NaBloPoMo November 2014

 

Be the Reason …

BE THE REASON SOMEONE SMILES
Even if it’s you. Even if you have to work at it.

As hard as it was being a caregiver. As devastating as it was be in so many ways, there were moments of when I couldn’t stop the giggles. And laughter, like a good cry, can make it possible to go on. And sometimes the humor comes at the most unexpected times.

The following is an excerpt from Confessions of an Imperfect Caregiver that includes a scene about my father-in-laws’ obsession with laxatives. I believe many of you will relate to it.

“When he first came to live with us, the only things he asked us to buy for him were Milk of Magnesia and prune juice. He had prescriptions for stool softeners and laxatives issued by his former doctors and continued by his new doctor. He constantly complained of constipation, greeting everyone he spoke to, including strangers, with “Hello. How’s everything? My bowels don’t move.” If he did happen to go, he made sure he told them about that as well, in great detail. It soon became clear he was taking far too much of the stuff. Every day, in the morning and at midday, he’d drink a large glass of prune juice, followed by Milk of Magnesia. Often he’d wait a few moments after taking it, look at his watch, and take some more. A few moments later he’d do it again. One day, after just telling me he’d had a bowel movement, I saw him drink another large glass of prune juice and reach for the Milk of Magnesia.

“Why are you taking that? “ I asked.

“For the constipation,” he said.

“But you just went.”

“That don’t count. It was all liquid.”

That’s when I knew I had to do something. No matter how we tried to explain it to him, he wouldn’t accept that it was the laxatives that were causing his problem. The more he took, the worse it got—and the more he worried—resulting in a vicious cycle that was interfering in his normal bodily functions. His psychiatrist said that it’s not unusual for a schizophrenic to keep track of what goes in and out of his body. In his mind, solid food was going in but nothing solid was coming out. That meant something was very wrong. Once I began to limit his access to prune juice and Milk of Magnesia, and started monitoring his use of laxatives, he started showing signs of stress. He paced and muttered to himself and began making frequent trips to the bathroom where he’d sit for hours, waiting for something to happen. I hated to see him like that, but I had to ease him off the stuff. His doctor tried to help by telling him that taking too many laxatives could interfere with his other medications and land him back in the hospital. He wasn’t buying it. When I wouldn’t give in, he complained to Mike, and when Mike backed me up, he called him one of the worst insults he could think of.

“You’re nothing but a dictator! You’re another Mussolini, that’s what you are!”

Later, after Rodger calmed down and we were getting ready for bed, Mike looked over at me and shook his head. “Mussolini? Now I’m Mussolini?”

I couldn’t hold it in any longer. The giggles I’d been trying hard to stifle came rolling out. “The Mussolini of laxatives!” I laughed harder. “You Fascist poop dictator!”

Mike looked at me in confusion for a moment, and then the hilarity of the situation hit him and he was laughing as hard as I was. I laughed so hard I got the hiccups, and that made us laugh even more. We ended up rolling on the bed, laughter feeding more laughter, until we were exhausted.

“Oh wow, I needed that,” I said when I was finally able to catch my breath.

“Me too,” Mike agreed. “I don’t know how you do it every day. He’s so damned stubborn. I’m glad I’m not like that.”

“Right.” I poked him the ribs. “Me either. I’m not stubborn. I’m determined.”

“Yes, dear,” Mike said with a grin. “Do you think you can determine to keep loving me through all this?”

“Sure, if you can determine to come over here and give me a kiss.”

“You got it, Babe.”

He did. I smiled and I hope you are too.

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NaBloPoMo November 2014

He Was Home For A While

Frail and with growing memory problems, Rodger kept us on our toes as he struggled to navigate through a world that refused to make sense. Routine was vitally important; without it he wound down into confusion so complete all movement came to a halt. He was stuck somewhere in time.

Years after moving into our home, we would come upon him staring into space, mumbling softly about a missed appointment made fifty years ago or reliving a day in the life of a long ago soldier.

Sometimes with pity, always with patience, I would gently bring him back. “Orienting him to time and place,” as the doctor said.

His favorite room was the kitchen. Small and bright with sunshine, it opens onto a view of the Blue Ridge Mountains. Hills he called them, telling me about the fabulous peaks he once climbed in the mountain ranges of Italy. For a short time his memory was as sharp and clear as the cold mountain air of days gone by.

Elegant Mountain Ranges, Italy

A charming boyish smile crossed his face as he spoke of his mother making polenta before going to church each day. Of rolling up the rugs and dancing on Saturday night in a kitchen glowing with firelight and youthful dreams.

In the kitchen, with no need of persistent voices orienting him to time and place, he was able to move. He was home again.

Hold on to the precious moments when they come for they are the blessings we receive from those who cannot thank us.

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NaBloPoMo November 2014

A Devastating Truth

Caregiving Fearsome Intimacy
When we hold our infants in our arms we are filled with awe and hope for the future. We envision a life of promises fulfilled. We never picture them feeding us, holding our hand to keep us from falling, or changing our under things.  I didn’t want to type the word diapers. The thought of losing my dignity to such a degree is truly fearsome. In my mind I heard the words, “It’s enough to scare the pants off me.” The irony makes me shudder and chuckle at the same time.

The caregiver and the cared for are locked in a fearsome intimacy. I don’t know where this quote came from. If I did I would give credit here. What I do know is, whoever penned those five simple words shared a devastating truth.
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NaBloPoMo November 2014

Pick Out the Splinters

splinters in your butt

Caregivers, you know who I mean. The people who call to question and criticize what you do and how you do it.  The family members who drop by once or twice a year and spend an hour or so before heading out  to a restaurant for dinner or leaving on a fabulous vacation.  The ones who can’t help you because seeing Mom or Dad like that is too hard for them.

These are the same people who say, “Please let us know what we can do to help,” but are never available when you need someone to take over for a day or two so you can get some much-needed rest.

We have all dealt with the splinters. If we don’t pick them out in time the wound caused by their careless dismissal of us and our loved one festers and makes life even more difficult for us.

I hope when that happens you will remember this funny little cartoon and smile and feel a bit better, even if only for a moment. You are not alone.

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NaBloPoMo November 2014

A Prayer for the Caregiver

As a caregiver I spent a lot of time praying. I doubted my ability to carry on and castigated myself each time I lost patience or failed to protect my father-in-law from another setback. While I recognized his frailty I forgot about my own. I expected perfection where there could be none. I prayed for guidance and asked God to show me the path he wanted me to take. There were many days when I doubted He heard me. Often I wondered if I was worthy of His help and attention. I cried a lot. But always, when I was at my lowest, help arrived in some form and I knew my prayers were heard. Today I share this prayer for you, the caregiver, so you know you are never alone and you have done well.

A Prayer for the Caregiver

By Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.

For your love, sacrificial, is God at his best.

You walk by faith in the darkness of the great unknown,

And your courage, even in weakness, gives life to your beloved.

You hold shaking hands and provide ultimate care.

Your presence, the knowing, that you are simply there.

You rise to face the giant of disease and despair,

It is your finest hour, though you may be unaware.

You are resilient, amazing, and beauty unexcelled.

You are the caregiver and you have done well.

Prayer shared courtesy of A Place for Mom

The following is an excerpt from Confessions of an Imperfect Caregiver:

There were only two cars in the church parking lot when I pulled in, but considering it was a weekday afternoon, that wasn’t surprising. After dipping my fingers into the holy water font and making the sign of the cross, I slipped into a pew near the front of the church. For several moments I simply sat there, taking in the lingering aroma of incense, candle wax, and furniture polish. …

“Our Father, who art in Heaven,… ” I prayed, the words taking on a new importance as tears of frustration and guilt streamed down my face. “Thy kingdom come. Thy will be done …”

All right, God, if it is Your will that I take care of my father-in-law, I’m happy to do it. But You have to help me. I’m new at this, and I’m afraid I’m not doing it very well. He’s a sick old man, and he’s not trying to be difficult. I know that. So why do I feel so angry?

“… And forgive us our trespasses, as we forgive those who trespass against us.… but deliver us from evil … ” I sobbed, my heart breaking for both of us. Why couldn’t I be stronger?

“Help me to be more patient and understanding. Guide me to make the right decisions when it comes to his care. Help me find the right words to soothe him when he’s confused and frightened. Please take the anger away. It frightens me. It weakens me, and I need to be strong to do this. I don’t want to let Mike down, and I can’t let Rodger down. He has nowhere else to go. Please, hold me in your love and light and show me the path you want me to take. Amen.”

My prayer complete, I struggled to stop crying, but the harder I tried the harder the tears flowed. Just as I began to fear they’d never end, exhaustion and embarrassment forced me to gain control of myself. Get a grip, I scolded myself. You’ve had a good cry, and it’s time to go home.

I’d left my purse in the car and had nothing to mop up the watery mess I’d made of myself, leaving me with no choice other than to wipe my nose on my sleeve. I didn’t notice the near-silent approach of the only other person in the church until a tiny elderly woman, dressed all in black, touched my shoulder and handed me a bunch of tissues.

“God bless you,” she whispered as she turned and walked away.

Yes, God bless me. I sure do need it.

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NaBloPoMo November 2014

NaBloPoMo – A Blog a Day in November

November is a big month for writers. It’s time for NaBloPoMo and NaNoWriMo – National Blog Posting Month where bloggers set a goal to write a post a day in November. For me that’s a big challenge. I try to post once a month but sometimes the days get away from me and it just doesn’t happen. I’m eager to see how this project works out and what effect it will have on my time management going forward.

NaBloPoMo was inspired by NaNoWriMo – National Novel Writing Month wherein writers are challenged to write a novel in the month of November.  This annual contest has resulted in many published novels and inspired thousands of writers to complete their work in progress even if they didn’t finish by the end of the month. I wish all the novel writers and bloggers starting this challenge good luck and good writing.

Here I go.

panic attack

The first time I had a panic attack I thought I was dying. I woke from a restless sleep with my heart racing and a heavy feeling in my chest. Then my fingers began to tingle and before long that sensation moved up my hand and into my arm.  At first confused and then terrified by what was happening I woke my husband. Call 911, something is very wrong! As I waited for the ambulance to arrive my heart raced faster and faster and each time the speed increased I became more frightened. Cold sweat poured out of me. I’m having a heart attack!

This can’t be happening. I have too much to do. I can’t do this to my family. How could my husband cope with the loss and care for his father? I was not ready to leave my grown children or my grandchildren.  I prayed for the ambulance to arrive in time while Mike paced.

“Your heart is fine, the EMT said after examining me thoroughly. What’s going on in your life that’s causing you so much stress? 

Caregivers know the answer to that.  Constant vigilance. Sleepless nights for days and weeks on end. Second guessing by family members who aren’t there every day like you are.  Loved ones who not only resist but openly fight your efforts to care for them. It all piles up and you take it all in. Swallow it down and start another day. Eventually something has to give and your body sends out an urgent signal. I’m in trouble here. And you are. Left untreated the same stress that leads to panic attacks can result in a heart attack. The good news is there is treatment. The key is to understand what is happening and why.

After that terrible scare I read all I could about what had happened to me. I quickly learned to recognize the onset of a panic attack. When I sensed one coming on I’d go to a quiet room, lie down and take slow deep breaths to calm myself. Over time it became easier and the attacks lessened in intensity and duration. Now they occur rarely and dissipate in minutes. I’m lucky. I can control my panic attacks without medication. For some the attacks are so severe and frequent medical intervention is needed. If that’s the case with you, don’t hesitate to consult your doctor and get treatment. You will feel so much better if you do.

****************************

Is it a heart attack or a panic attack? (from HelpGuide.org)

Most of the symptoms of a panic attack are physical, and many times these symptoms are so severe that people think they’re having a heart attack. In fact, many people suffering from panic attacks make repeated trips to the doctor or the emergency room in an attempt to get treatment for what they believe is a life-threatening medical problem. While it’s important to rule out possible medical causes of symptoms such as chest pain, heart palpitations, or difficulty breathing, it’s often panic that is overlooked as a potential cause—not the other way around.

A panic attack is a sudden surge of overwhelming anxiety and fear. Your heart pounds and you can’t breathe. You may even feel like you’re dying or going crazy. Left untreated, panic attacks can lead to panic disorder and other problems. They may even cause you to withdraw from normal activities. But panic attacks can be cured and the sooner you seek help, the better. With treatment, you can reduce or eliminate the symptoms of panic and regain control of your life.

For more information about panic attacks and how to treat them go to http://www.helpguide.org/articles/anxiety/panic-attacks-and-panic-disorders.htm

To read more about Bobbi and her experience as a caregiver purchase a copy of her book, Confessions of an Imperfect Caregiver. Blog followers receive a discount when ordering directly.

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NaBloPoMo November 2014

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