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.

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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.

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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.
 
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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.

 

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NaBloPoMo November 2014

 

The Holidays Are Here – It’s Time to Go to the Hospital

It happened every year. At some point in the holiday season Rodger would be in the hospital. Aspiration pneumonia three years in row between Thanksgiving and Christmas. A heart attack on Thanksgiving Day one year. Worsening Dysphagia on top of fluid buildup in his lungs due to congestive heart failure the following year. One time a broken partial plate sliced a gash in his tongue requiring a trip to the nearest Urgent Care where he sat with a bloody paper towel hanging out of his mouth for over an hour waiting for treatment while others in the waiting room tried hard not to stare. I can only wonder what they must have been thinking. A week later he developed a fever and had to be admitted with an infection of unknown origin.

The stress of the holidays got to him. We were doing all the work to get everything done while his routine went on unchanged. Why then did it take such a toll on him?

Holidays are a time to gather and share a feast with our family and friends. When we are children we watch our mothers and grandmothers prepare the meal, inhale the delicious aromas of various pies baking in the oven and look forward to chasing our siblings and cousins through the house while the adults sit at the table long after dinner and talk about boring stuff.

When we become the parents we follow in their footsteps taking satisfaction in passing on our traditions. Then the losses begin, becoming more devastating as the years pass. Our grandparents first, then our parents. We still celebrate but the occasions are tinged with melancholy as we look back with joy and a few tears remembering the ones no longer with us.  We share stories of the past. We laugh and cry and hold the new generation of infants and children a bit longer than they like because they are our hope and we know one day we will be their memories.

The stress of the holidays got to him every year and  it may do the same for your loved ones. If it does it could be because they are reliving the losses more than the joys in their life. Depressions sets in and with it their immunity becomes compromised. Unfortunately,  I don’t have any miracle solutions to offer. What may ease them in the moment for one of us may backfire for another and we all receive more advice from others than we can possibly follow anyway.

What I can say is, “I understand and I am here for you when things begin to become more than you can handle on any given day. Be kind to yourself and enjoy the good memories when they come.”

 

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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

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

How Much Can We Handle?

broken caregiver

It’s a sad truth that being a caregiver can break us. We don’t need to read the statistics to know that caregiving comes with a cost to our health, our relationships and our self-esteem. We do a job we know will end in incredible loss. We cannot win no matter how hard we try.

Those who don’t understand criticize our decisions and question our intentions during brief visits where the person who called us vile names and lashed out at us all night sits smiling quietly and complains about how we treat them.

And so we break. Sometimes for just a moment or two, other times we pray for days to find the strength to face the morning and start anew. And for some it all becomes too much and we become ill ourselves.

In my case as things became more complicated and the stress built I had panic attacks and migraine headaches. My hair began to fall out. I needed respite care. As a disabled veteran receiving all of his care at a VA hospital Rodger was entitled to receive care in the hospital for up to 30 days a year, no longer than 14 days in a row.  We used it when we could but there came a time when we were told there were no beds available and respite care was suspended.  I was desperate for rest and kept asking only to receive the same answer.

“There is no room.”  That is until the day I spoke these words, “I need respite care for his sake and mine. If it can’t be arranged I will call my congressperson and if that doesn’t work I will have to admit him to the VA hospital nursing home permanently.”  Two days later a bed opened up and we both got the break we needed.  It shouldn’t have come to that. I know many caregivers don’t have that option and for them taking a stand will not make respite care available. We need to change that or there will be many more broken caregivers and who will care for them?

The following is fromCaregiver.org

Impact of Caregiving on Caregiver’s Physical Health

  • While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well, 17% of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities.
    [AARP Public Policy Institute Valuing the Invaluable: 2008 Update. The Economic Value of Family Caregiving]Updated: November 2012
  • Research shows an estimated 17-35% of family caregivers view their health as fair to poor.
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.]Updated: November 2012
  • Those who are more likely to rate physical strain of caregiving “high” are female (17% vs. 10% males) and older (21% are 65+ vs. 11% at 18-49). They have lower incomes (19% vs. 11% of those with an annual income of $50,000+), a higher level of burden (31% vs. 9%, of those with a moderate level of burden and 5% of those with a low level), and are living with their care recipient (29% vs. 11% who don’t live together).
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.]Updated: November 2012
  • 11% of family caregivers report that caregiving has caused their physical health to deteriorate.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
    • 21% of older caregivers caring for those 65+ report a higher degree of physical strain, compared to 13% who are younger.
      [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.]Updated: November 2012
    • Women (16%) more than men (11%) report having more stress in caregiving responsibilities, (4-5 on a 5 point scale).
      [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.]Updated: November 2012

 

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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

What If I’m Next?

What if it happens to me? I’m scared. I know too much. I’ve seen the deterioration. I’ve heard the rants and the accusations.

“She’s poisoning me. She never gives me any food. I’m a prisoner here.”

When I wake in the middle of the night and get up to pee will an alarm start shrieking, scaring me so I wet my pants? I don’t want someone else to bathe me. I can’t bear the thought of anyone seeing me at an advanced age, withered and naked. I’ll probably fight, kicking and screaming, if they try.

What about all those pills? What will they do to me? Drug interactions can make things much worse. Remember, I know too much. I’ve seen it. I won’t want to take them.

If I want to leave my room and walk the halls because I’m tired of sitting for hours will people try to confine me and say, “She wanders all the time?”

Being a caregiver was the hardest thing I ever did. It was also a gift to be there for those who needed me. Still, I’m afraid. What if I’m next?

As Iwrite this, I am grateful that my children say they will be there for me. I don’t want to go to a care facility where the names and faces change daily. I’m not comfortable around strangers now. I can only imagine how much worse it would be then.

I want to know. I need to know. Is Alzheimer’s and dementia hereditary?

***

According to information posted on the Alzheimer’s Association website, the majority of dementia is not inherited. The article written by, Professor Nick Fox, Honorary Consultant Neurologist at the Institute of Neurology in London says in part:

“Many people fear that Alzheimer’s disease in the family may be passed on to children and grandchildren. In the vast majority (99 per cent) of cases, this is not so. Like many conditions, having Alzheimer’s disease in the family does very slightly increase the chance of people in later generations getting the disease.

The most important risk factor for Alzheimer’s disease is age. Because Alzheimer’s disease is so common in people in their late 70s and 80s, having a parent or grandparent with Alzheimer’s disease at this age does not change your risk compared to the rest of the population.”

***

Reading that article and others on the subject, I feel better. But, it also goes on to say,”There are some forms of dementia that are inherited.”  As far as I know, there is no indication any of them run in my family. I’m relieved for now but I know every now and and then I’ll begin to wonder …

The entire article referenced in this post can be read here:  http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=917

For all of us, for all forms of dementia, I pray a cure is found soon.

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NaBloPoMo November 2014

 

 

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