Good Morning Caregivers – If I Tell You I Need You

If I tell you I need you

Somewhere a caregiver needs you. They may not say it out loud but they are communicating their need. It could be in their absence from all the activities they used to be involved with or by the phone calls, text messages or tweets that no longer arrive in your inbox.  Perhaps the last time you saw her or him in the grocery store there was a brief moment when he or she appeared about to cry.

Maybe you asked what you could do to help and were told everything is okay but, somewhere inside, you knew something was not as it should be.

It’s not that caregivers don’t or want your help, it’s that they don’t know what to ask for.

How do you request a good night’s sleep or a few moments to collect your thoughts? How do you tell friends who are so busy with their own families that you are lonely and wish they would stop by for a visit now and then?

How do ask someone to keep you from falling when every moment of your time is spent holding on for dear life to another?

Somewhere a caregiver is trying hard never having to depend on anyone, to never show any weakness.

If you know a caregiver, please don’t ask if he needs help. Know that he does and do whatever you can to let him know he is not alone.

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Good Morning Caregivers

A Caregiver’s Dream

One of the most common bits of advice for caregivers is to get a good night’s sleep.

“Goodnight.”

What wonderful images that simple word brings to mind.  I close my eyes and see myself drifting off to sleep in the biggest most comfortable bed on the market. I’m covered with a whisper soft blanket. I’m hugging my pillow. A tiny smile hints at sweet dreams to come.  When morning arrives I will awake refreshed ready to face another day caring for my loved one.

That is what I was supposed to do, right? That’s what all the experts said.  Trust me, it’s what I would l have loved to do.

Enter reality:

“Goodnight, Rodger.”  “Goodnight.”

It was eight o’clock in the evening and he had just had his last breathing treatment of the day. Only one round of medications was left to be taken. I had two hours to spend some time with my husband. We were exhausted and only half listening to each other.  I kept one ear open in case Rodger needed me. Nodding at my husband to indicate I was paying attention, I was also fighting to keep my eyes open.

At 10:00PM I got up and took Rodger his last medication of the night.  He took it without complaint. Yea!

“Goodnight, Rodger.” “Goodnight.” I was too tired to brush my teeth. Tomorrow was another day and I hadn’t had much to eat anyway. Did I take a shower in the morning? I couldn’t remember.  I’d do that in that the next day too.  After saying my prayers I closed my eyes and waited for sleep to come. My thoughts looped and circled around on themselves. What ifs and why didn’t I competed with I should have until I finally lost consciousness.

12:15 AM – His bed alarm went off. He hated the alarm. He hated the bedside commode and he resented me for making him use them. I ran down the hall to discover he had scooted down to the foot of the bed and managed to squeeze through the space between the bedrail and the foot of the bed.  He was clinging to the rail, trying to keep from falling.

“Here, let me help you.”  I eased him over to the commode and helped him stand to pee. He refused to sit.  “I’m not a girl!”

“Why didn’t you call me if you wanted to get up?”

“I didn’t want to bother you. I used my short cut.”

“Short cut?” It took me a few moments to understand he was talking about the gap between the bedrail and the end of the bed.

“You aren’t supposed to get up unless someone is with you. You could fall. That’s why the doctor ordered an alarm for your bed.”

“The doctor sent it?”

“He explained it when you saw him last month?”

‘I don’t remember. How does he know if I go to the bathroom? It’s none of his business.”

Five minutes later we were both back in bed.

12:45 AM– His bed alarm went off.  That time he tried to climb over the rail and was stuck half way.

“What are you doing?”

“I have to pee.” I got him up and helped him to the commode. He stood for a couple of minutes. Nothing happened.

“I thought I had to go.” We went back to bed. 2:00 AM – The bed alarm went off. He was stuck half way out of the bed again. We repeated the scene above.  2:10 AM – Alarm went off again. His foot is stuck in the rail.  3:05 AM – Alarm went off again. He had scooted down to the foot of the bed and was trying to get up.

“I have to pee.” That time he did. 3:15 AM – Alarm went off again.  “I’m thirsty.”   I went to the kitchen and mixed some thickener in water and helped him spoon it into his mouth.

4:00 AM – He was calling for me.  I rushed to room. His covers were tangled around him and he couldn’t move.  I got him into a chair and arranged his bedding.  Had him pee while we were up. 5:15 AM – The bed alarm went off again. I knew I was up for the day.

The next day, and the next, and the days after that? Repeat the above actions from the beginning.  Sometimes it was the voices that woke him.  Some nights he thought it was day and he was ready to start his routine.

Believe me, I followed all the suggestions, I kept him up during the day. It didn’t matter. I put him in adult pull-ups so he didn’t have to use the bedside commode. I’d find them torn to shreds the next time I went to his room.   I followed all the advice about soothing music and quiet time before bed. I tried it all again and there we were night after night. Sometimes I made a bed for myself on the floor beside him so he knew he was not alone.  Still the alarm went off through the night.Get a good night’s sleep? I was ready. I even drifted off for a while, and then his bed alarm went off.  Again.

Caregivers do need a good night’s sleep and they know your suggestions are well intended and sincere. What they want you to know is that it’s not that simple. Their days and nights are full, minute to minute, crisis to crises.  So if you are wondering how to help a caregiver my suggestion is a gift certificate for a few hours of respite each week so she or he can take a nap.

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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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If You Stumble …

if you stumble

“You must be a saint.”

I heard that I a lot when I was caring for Rodger. Always from people who were not caregivers themselves. Rodger would have been the first to agree with the response I always gave.

“I’m no saint.”

Caregivers know there is nothing saintly about us or what we do.  I  lost my patience, became angry on occasion, felt put upon for all the changes in my life, and often prayed for the strength to make it through another day. I stumbled often and denigrated myself for doing so.

I didn’t understand that stumbling along is the only way either of us could move through the challenges. Ours was not a lovely choreographed waltz through life.  Raucous and primitive the music of dementia demands unpredictable movement and uncomfortable positions. Falling from time to time is a requirement  allowing us time to take a much-needed breath and identify the ever-changing rhythm before grasping hands and continuing on.

The fault here is not in our movement, it is in the mistaken belief that every step must be perfect for the dance to hold beauty.

Caregivers, my message to you today is, be kind to yourself.  “When you stumble make it part of the dance.”

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Please Make It Stop

melting clock “What time is it?”

“11:00 in the morning.”

Thirty seconds later – “What time is it?”

Thinking he didn’t hear me I told him again. “11:00 in the morning.”

Thirty seconds later – “What time is it?”

I sighed and turned down the sound on the TV and repeated the time once more.

Thirty seconds later – “What time is it.”

Then I knew. He’s mind was stuck in a loop. Before I understood what was happening I would get frustrated and angry with him. He would go on like that for hours. Why the hell did he do it? Didn’t he know it was annoying as hell? I was convinced he did it on purpose in order to get attention or to get back at me for controlling him as he often accused me of doing.

Then I learned more about dementia and how the brain works. He wasn’t doing it on purpose. He could no more stop repeating himself than a scratched old record album could stop from skipping when the needle reached a flawed groove. (If you’re too young to understand that reference, ask a baby boomer, he or she will explain it to you.)

Once I understood what was happening I was able to figure out what to do. I had to move his thoughts past the flaw in the groove so they could move on to the next section.

“What time is it?”

“It’s almost time for lunch. Are you hungry?”

“No. What time is it?”

“It’s time to wash your face. Here is a warm cloth.”

The distraction helped for few minutes and then he asked again, “What time is it?”

“It’s time to fold these towels. Will you help me?”

“Yes. I have to do something sometime. It’s not good to sit and loaf all day.”

A few minutes pass in blessed silence as he folds the towels and I take them an unfold them to keep him occupied.

And then it happened. He looked up from his work and said, “My mother, she washed clothes on Monday. Monday was wash day.”

As he folded all the towels one more time he began to relate another memory of his youth. The needle had moved on and the result was truly music to my ears.

Note: It may take a few moments and some creative answers to move your loved one out of the loop but if you keep trying it will work and cut the time you both have to deal with to minutes instead of hours.

Does your loved one get stuck in a loop asking the same question or saying the same thing over and over? How do you handle it? I’d love to hear from you. Post your response in the comment block below.

 

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NaBloPoMo November 2014

 

The Face of a Caregiver

The following is written by caregiver blogger, Barbara London

Hidden Face 3Walking along the street – do you see her? Can you tell who she is or what she may be hiding deep inside? Do her inner feelings show; her longings or desires? Do you know what she spends her time doing? She could be almost anyone you see in the park; at the mall; at the grocery store; walking beside you every day. She could be someone’s wife, mother, daughter, sister, maybe even grandmother. Actually, “she” could even be a “he”!

The face of a caregiver is that of any other person you may see. They have the same feelings and desires as you or anyone else. They spend their time caring for a loved one who is unable to care for themselves. Sometimes they don’t have any choice in caring for this loved one; and sometimes they aren’t even sure if they even love that loved one anymore!

Many times the caregiver doesn’t even consider themselves a caregiver…which is where I found myself just a few months ago.

“She drew an unsteady breath. Yes, he has problems, and yes, I struggle with my feelings toward him all the time. But he’s not a bad man and I know that part of me will always care for him. Sometimes, I feel like I’m the reason he’s able to function as well as he still does…’

These words from the Nicholas Sparks book “The Best of Me” could be written by me about the journey that I am on with my husband who has vascular dementia. We have been on this journey for quite a long time; yet I have just recently realized that I am a caregiver. And, there have certainly been times when I wished I could walk away from it all!

I questioned the idea of my being a caregiver for several reasons:

  1. My husband is still capable of handling many things on his own: dressing and bathing himself; eating/or feeding himself; warming up leftovers in the microwave; driving and getting where he need to go by himself; various other chores around the apartment.
  2. My husband’s dementia was caused by small strokes that damaged the memory portion of the brain; as far as we know, there have not been any more strokes and he has been somewhat stable since the diagnosis; but he is now getting worse.
  3. We have not had the same doctor for quite a number of years due to changes in insurance coverage and having to switch to different doctors. The doctor who was originally treating my husband is no longer in practice. So, there hasn’t been any consistent follow-up of the diagnosis.
  4. My husband’s personality has sometimes been a little abusive (verbally and mentally) and I was not able, at first, to decide if it was personality or the dementia that was causing these outbursts.

Yet, there are things that my husband is unable to do: cook a decent meal (using the stove rather than the microwave); make a budget and buy nutritious foods and items needed rather than snacks and munchies; handle the checkbook and finances; make doctor’s appointments; order prescription refills and setting up his daily doses of medications.

In addition to the above reasons, my husband is good at hiding his hearing problem – he just nods his head in agreement, or assumes he knows what has been said. And he is even better at covering up his forgetfulness; he just repeats the same questions multiple times if he is unsure or has forgotten. In the beginning, I just didn’t realize he was covering up.

Recently, I participated in the write31days.com challenge to write on a particular topic for the 31 days of October. I shared the journey with my husband’s dementia using the title “Dementia’s Demands”. During this time I was encouraged and supported by a wonderful group of bloggers who were also participating in the challenge; many, as I later learned by reading their blogs, were also on a journey with dementia, cancer, depression, and many other difficulties. Many were, in one form or another, a caregiver. Yet, looking at their pictures – they didn’t look much different than I or anyone else! As the days of that month continued, I discovered that – yes! – I am a caregiver! I “care for” someone who is unable, in many ways, to care for themselves. This, in itself, makes me a caregiver.

Are you struggling with that identity? Think about it…you may well be one, too!

For more on caregivng from Barbara’s London go here::http://scrapper123.blogspot.com

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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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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

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

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