It’s Too Hard to See Him Like That

Caregivers,  often do you hear those words from family members trying to justify avoiding your loved one. For refusing to help even long enough to give you a few hours or days of respite? They may feel that upon hearing those reasons we will understand that they would like to help but they simply can’t.

Unfortunately, what they are really saying is:

“It’s too hard and it doesn’t matter how it affects anyone else. It’s not about Mom or Dad. It’s not about our brother or sister. It’s about me and how I feel.”

Some common comments and my responses follow. As the Imperfect Caregiver I speak for you so you know you are not alone.

“Mom doesn’t know me anymore so why bother visiting? When I do come by all she does is repeat the same stories over and over. It’s boring and irritating. I can’t take it.

 “I feel that way sometimes too. That’s why I need your help. Why can’t you understand that?”

“She was up all night for the past two weeks and you desperately need sleep? Take a nap during the day when she does. What’s your problem?”

“It’s not safe. If she wakes before I do she could leave the house and wander away or decide to cook something and forget it on the stove causing a fire. Could you nap under those conditions?”

“He’s combative and accuses you of stealing from him? What did you do to set him off? What do expect me to do about it?”

“I didn’t set him off. The disease did. I don’t expect you to fix it. I need you to understand what this terrible disease is doing to him.”

She seemed fine to me the last time I visited.”

If that’s true  and she is fine,why don’t you come more often? Why are you too busy to give me a break?

“My father would never use language like that! Why would you say such things about him? I think you’re the one who has a problem.”

Yes, I have a problem. It’s trying to deal with all this and you too. Would you like me to tape record him for you?

“A nursing home? Never! I promised Mom we would never do that to her.”

“We also promised to take care of her. When did “we” become only me?”

“If things are so bad put her in a nursing home. What do you mean you need help to pay for it? What about her social security and Medicare?”

 “The facilities that would take her for what little she receives are full with long waiting lists and you clearly haven’t seen what goes on in those places. Someone would have to be there every day to make sure she got the care she needs and we know who that would be.”

***

Feel free to share some of the comments you hear from family members in the comment section below. It helps us all to know we are not alone.

Caregiver Cover WebClick here for Exclusive 20% Discount for Blog Followers
 
Also available on Amazon Published by Open Books Press – Retail cost: $15.95
Print $2.99 e-book

 

 

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.

Caregiver Cover WebClick here for Exclusive 20% Discount for Blog Followers
 
Also available on AmazonPublished by Open Books Press – Retail cost: $15.95 Print $2.99 e-book.

 

 

A Hug For You and Your Loved Ones

 

hug 3

This is the final day of National Blog Post Month and I met my goal of posting a blog a day. It’s been difficult at times to find something meaningful to share with you. Not that I don’t have anything to say, there is so much more to our story I am confident I can write about caregiving for many years to come. The sometimes difficult part is to be inspired on any given day to the degree that will honor all that you do.

This weekend two of my youngest granddaughters were here over night. They ran me ragged and I loved every minute of it. They just left with their Mom. I knew it would be exhausting but I want to spend as much time with them as possible while they are little and I am still able to hold them on my lap and tell them stories. One of the things I treasure most about these visits  is the hugs. Tiny arms wrapped around me always bring me a sense of peace and an outpouring of love.  It doesn’ matter how young or old we are, a hug is one of the greatest gifts we have to offer.

Hug your loved one today. You will both be enriched by it.

Caregiver Cover WebClick here for Exclusive 20% Discount for Blog FollowersAlso available on AmazonPublished by Open Books Press – $15.95 Print $2.99 e-book.

You Held My Hand

 

As a child you held my hand

Hands reaching for one another speak to me as you can probably tell from this image as well as the images on the cover of Confessions of an Imperfect Caregiver and my business card. They remind me of the innocence of my childhood and the many times I reached for the hand of my mother or father and the sense of security their touch inspired.

And of course I’ll never forget the first time I held the hand of one my four babies. The tiny fingers would wrap around one of mine as we bonded body to body. I held their hand when they took their first wobbly steps.  When they prepared to walk into school for the first time I felt the loss as their grip loosened and they began to slip away from my protection.

Now I hold the hand of my loved ones as we take our final steps together and although it is the hardest thing I’ll ever do it is a gift I will not shy from.

As a child you held my hand … Now is my turn to hold yours.

Caregiver Cover WebClick here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

NaBloPoMo November 2014

Keeping It Together

focus on what holds you togetherAt the end of the day I spent so much time going over what  I might have done better and trying to figure out how to fix an unfixable problem I lost sight of the truth. Together we were doing our best and that was all anyone could ask of us. 
 
Caregiver, be kind to yourself you are doing something wonderful every day.
 
Caregiver Cover Web

Click here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

NaBloPoMo November 2014

A Bit of Humor To Get You Through

As you continue to care for your loved ones and prepare to recognize the Thanksgiving holiday in a way that is best for you and your family; I offer a bit of humor in the hope of bringing a smile to your face.

survive the week

And in honor of your making it through as I’m sure you will, you are a caregiver after all, here is your sparkling helmet.

sparkle helmet

Caregiver Cover Web

Click here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

NaBloPoMo November 2014

 

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.

 

Caregiver Cover Web

Click here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

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

Caregiver Cover Web

Click here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

NaBloPoMo November 2014

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

Caregiver Cover Web

Click here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

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.

Caregiver Cover Web

Click here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

NaBloPoMo November 2014

Previous Older Entries Next Newer Entries