A Call for Help For Caregivers

Below is a link to an article in the November/December Issue of Virginia Woman Magazine (Loudoun) titled A Caregiver Near You Needs Help.

Feel free to share the link as you see fit. Who knows, it may make a difference for someone.

http://issuu.com/virginiawomanmagazine/docs/loudounnovdec2015highresnobleeds/17?e=17049404/31065692

Caregivers Three

Cargivers Three 3                                                           Bobbi, Gregor, Erica

When I started The Imperfect Caregiver blog I did it because I had felt so very alone during the time I was caring for Rodger.  There didn’t seem to be anyone I could talk to who could possibly understand how hard it is to do this.  It is also why I decided to write the book, Confessions of an Imperfect Caregiver. It was my hope that in writing about what it’s really like I could send a message to caregivers everywhere that someone does know. I am here and I do understand. I feel the emotions that course through you on the good days and the bad days. And there are so many bad days as the diseases progress and those in our care slip away memory by memory, piece by piece.

As I reach out to people in the caregiving world online and in person, the caregivers and those who write about caregiving, I am blessed to meet some amazing people and learn their stories. The more I hear from you and them, the more I learn and am able to share here and in the books to come.

Last week my husband and I traveled to New York City to see a staged reading of The Accidental Caregiver, a play based on the book by the same name, written by Gregor Collins. His story of caring for Maria Altman is vastly different than my story and, having read the book and seen the play, I imagine it is very different than that of yours as well.  They met as strangers and came to love one another as family, she in her 90s, and he in his 30s.  A unique story for sure.

The trip also provided and opportunity for me to finally meet in person another caregiver who bravely shares her story. I met Erica Herd online during the time I was completing Confessions of an Imperfect Caregiver. Erica is a caregiver for her mother who is in a care facility. She is the author and solo performer of the play, Alzheimer’s Blues. Imagine reliving your story in front of audience over and over again. How brave and special that is.

I am grateful to have them as friends and proud to introduce you to them here.

Caregivers, your story is important. Please feel free to share some of your here.  And please, help ,e help you and others by adding your pleas to mine as I challenge Dr. Phil to use his resources and the Dr. Phil Foundation to establish grants to help caregivers most in need.

To Contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

https://www.facebook.com/drphilshow?fref=ts

 

Caring for an Elder with Dementia: Top 3 Negatives Made Positive

Guest blogger, Derek Hobson, shares how the difficulties that caregivers encounter can help us grow.  Welcome Derek.

Caring for an Elder with Dementia: Top 3 Negatives Made Positive
By: Derek Hobson

Becoming a family caregiver wasn’t easy and there were times where I downright loathed all the responsibilities. But when my grandmother passed away and my duties were lifted, there was this… elation that occurred. I don’t want it to sound like I was thankful that she passed, because certainly the first few weeks were dreadful, but I didn’t want to feel guilty for feeling relieved that she had found peace. Part of what made me feel less guilty was the fact that I had contributed in such a big way, but more than that, I felt less guilt because caring for my grandmother made me capable of handling so much more.
At the time, of course, many of the tasks were unbearable (which I’ll get to in the list), but once they were completed for the final time, I saw how my grandmother had helped me grow. Things that I hated doing, made me more prepared for future situations. It’s almost like – no, it absolutely is like yin and yang. Two supposedly opposite sensations, turned out to be complementary. By struggling to take care of my grandmother, I found the positives in every negative task. Admittedly, that not make a ton of sense without context, so here are my top 3 negatives made positive.
1. Sleeping in Front of the Door
My grandmother had dementia and even though we wheeled her around the house, she was not confined to the wheelchair. While it wasn’t often, a few times she would sometimes stumble out of bed and walk around the house in the night. It could’ve been much worse, I mean, I’ve heard of stories of seniors leaving the house at night and wandering around the neighborhood. While this never happened to my family, my grandfather would not hear of it; his precaution was to rotate who would sleep in front of the door to make sure she didn’t wander off.
This wasn’t simply uncomfortable, it was unnecessary! I made multiple suggestions for how we could seal the door, set up a blockade, or rig a bell, but my mother reminded me it wasn’t simply making my grandmother comfortable, but my grandfather as well. So, I begrudgingly slept in front of her door on more than a few occasions.
At the time, I never would’ve thought this would evolve into a positive thing, but it has. I don’t know how many people have researched power-napping. The idea being that if you nap for 15 minutes, you’ll feel as refreshed as if you slept for two hours (or 8 hours in some cases). Well, I could NEVER power-nap. I never knew how long to set my alarm for because I needed some time to fall asleep, but then, if I set my alarm for 20 minutes, I would be thinking of how limited my time is, I’d be counting it down rather than focusing on getting to sleep; it was dreadful!
Now though? After sleeping in front of my grandmother’s door, I can sleep practically anywhere. It may sound silly, but it’s a great thing. If I had a long night and have a big presentation in the morning, I nap for 15 minutes in my car, get up and do it. If I’m exhausted after the gym, but it’s still early in the evening, then I’ll nap for 15 minutes, and head out. I can sleep in my car, on a plane, the stairs – I haven’t tried it, but I’m sure I could. I am definitely better for it.
2. Communication
Eventually, my grandmother’s dementia became so bad that she couldn’t form sentences anymore. However, when it hadn’t progressed that far, she would talk to me, tell me stories, and ask me questions… and then repeat those questions and those stories. The repetitiveness made me so frustrated – especially when I thought about what I’d rather be doing.
Now, this negative didn’t happen overnight, but after several months, I realized what a unique blessing this could be. I’d often been told that I wasn’t a good listener… well, actually, if I’m being honest, I was told, “you don’t respect people when they talk to you,” which seemed harsh at the time. However, as time went on, I realized what that meant; the very thing, I said above, that I grew frustrated when I thought about what I’d rather be doing.
When I stopped thinking of where I’d rather be or who I’d rather be with, I started listening and was given the gift of communication. When my grandmother repeated questions to me, I didn’t always answer with clarity or with specifics. I would answer robotically or with generic answers. Later though, I started actively listening and really empathized with my grandmother. There was a stark difference between when I would just answer monotonously and when I actually started responding.
Since then, I’ve noticed in my personal life that I butt heads with people less often and when I do it’s resolved with concise communication.
3. The Stuff You Don’t Want To Do
I never used to talk about this stuff openly, but it’s something I’m sure many family caregivers experience. The stuff you don’t want to do… specifically dressing, bathing and any sort of clean-up that needs to happen.
My grandfather was a saint and tried to take all this on by himself, but even he needed a break and of course, that meant I was runner-up.
I’m not going to lie to you and say that I enjoyed any of this stuff… looking back, I’m actually surprised I managed at all. But without going into the details, I have since learned that I can handle just about anything. If it’s gross, sticky, smelly – doesn’t matter!
I’m still a young guy (relatively), but when my friends asked me to look after their kid for a day, I changed diapers with the best of them. I’m sure there are people who are pretty squeamish, but with no previous experience with babies, I could change diapers and clean spills without any uneasiness. Pretty much anything others don’t want to do, I do without a second thought.
Again, these aren’t things I relished at the time, but they’ve had a positive impact on my everyday life. Being a caregiver is not easy by any stretch of the imagination and it’s why I’m thankful that today I can work with a handful of people who actively lessen the load of family caregivers, but the rewards are manifold and actionable.

Derek Hobson, BA, is the editor for ConciergeCareAdvisors.com, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother. Since then, he has sought to inspire fellow caregivers as “there is no success without hardship.”

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Good Morning Caregivers

It’s your turn again. Please tell me how you are doing. If you’d like to share a bot of your story, please do. It may help another caregiver.

how do you feel today

DNR … AND

 

DNR or Do Not Resuscitate are not terms I ever wanted to associate with my father-in-law, Rodger. I knew he was failing every day and the nurse and social worker would arrive soon to process the paper work to set things in motion for home hospice care. Intellectually I knew what it meant. Comfort care only. In many ways that would be a blessing for him. There would be no more needle sticks for blood tests. No more medicine in apple sauce several times a day, made necessary by his increasingly severe swallowing problems. For months his diet had been restricted to pureed foods and thickened liquids. Parkinson’s disease, schizophrenia, dementia, and congestive heart failure had robbed him of the ability to walk, eat, or reason. He slept most of the day, every day, only to come awake agitated and afraid throughout the long nights.  His once powerful body was frail and painfully thin.

“I’m going to die soon. I had a dream last night and God told me my work here is done,” he’d told me the day I knew it was time to start looking into hospice care.

“I don’t have a good feeling about this one,” the hospice nurse reported to the doctor on the other end of the phone shortly after assessing him. “We need to get a hospital bed and a comfort kit here as soon as possible.”

She ended the call and turned to me to explain that the comfort kit would contain medications to keep him comfortable and pain-free without prolonging life.  A bright yellow document with the word DO NOT RESUSCITATE across the top was to be taped to the refrigerator to alert any emergency medical personnel entering the house that CPR was not to be administered.

“I know this hard,” the nurse said. “But it’s the kindest thing you can do for him now. CPR is brutal and in cases like this it’s cruel.  He is so frail it will most likely break his ribs and that in itself will kill him.”

“I know. It’s just that it feels so wrong. I hate seeing DNR emblazoned across that ugly yellow paper every time I enter the kitchen. Even though I know it’s inevitable I don’t want to lose him. ”

“Death is inevitable for all of us. All we can do is make it as comfortable as we can. Try not to think of it as DNR – Do Not Resuscitate. Think of it as AND – Allow Natural Death and make it your final gift to him.

And that’s what happened. When the time came he passed away naturally. Free of pain and at peace with his family at his side.

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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

Give a Caregiver a Bath

take a bath“November is National Caregivers Month. It is a time to acknowledge the important role that family, friends and neighbors play in caring for sick, elderly and disabled friends and relations.” From the Department of Health – Administration on Aging

It is also a time to support the men and women who are currently caring for a loved one at home. You may have offered to help many times only to be thanked politely for the thought and never taken up on your offer. Some of you may have started to wonder if she really wants help. Maybe she prefers to play the martyr and do it all herself and whine about how hard it is in order to make you feel guilty.

“Why should I keep offering if that’s the way it’s going to be?” you may have asked yourself.

The answer is, “Because she needs help. She wants help. If she doesn’t get help she is going to break under the pressure.” Often she doesn’t know what to ask for.

When my husband and I first announced we were bringing his ill father to live with us, many well meaning people assured us they would be there to help when needed, and they meant it. I remember saying, “We are going to need some time off once in a while so we can go on vacation or out to dinner. It will be great if I can call on you then.”

“Of course,” was the answer, and they meant it.
I didn’t know then that going out to dinner or taking a vacation would not be what I would come to need most. As my father-in-law’s illnesses progressed what I longed for was an hour to take a long hot shower or to soak in tub of water up to my chin until my fingers and toes turned pruney. I’d have done just about anything to stop listening for signs he was in distress or that he somehow knew I wasn’t paying attention and had decided to go down the stairs unattended, risking a fall. Even an uninterrupted ten minutes on the toilet would have been a gift on some days.

I remember one morning in particular. He’d had his breakfast and I had helped him wash and dress. I’d seen to it he had his medications and the TV was tuned to his favorite show. He should have been good for at least thirty minutes. I was about to start a load of laundry when my I felt the sudden urge to pee. I had just settled on the toilet when I heard him calling.
“Bobbi! Bobbi! Come quick, I need you!”

He sounded so frantic I was afraid of what I would discover when I got to him. I jumped up in mid stream, pulled my pants up, and ran up the stairs.
“What’s wrong?” I asked, ignoring the warmth running down my leg.
“The TV’s gone berserk. I can’t get any channels.”

I bit my tongue, fixed the TV, and went to my room for a quick wash up and change of clothes. Clearly it was going to be one of those days.
If anyone had asked what I needed that day the answer would have been quick and easy.

“I need a bath.”

November is National Caregivers Month. The gift of time is precious for those for whom every moment counts. When wondering what you can do to help, consider stopping by a caregiver’s home someday. Maybe she’s wishing for a bath too.

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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

A Year of The Imperfect Caregiver

It was one year ago today that The Imperfect Caregiver blog appeared for the first time. Within days I started hearing from other caregivers and caregiver bloggers and with each new connection I learned more about how enormous this community is and how little the people around us know about what we do and the impact it has on our society.

As a writer I try to inform through story telling. In doing so I hope to connect with caregivers and the people around them. So often our family members don’t understand what it’s like to care for a seriously ill loved one twenty-four hours a day for a period of many months or years.

Siblings live far away and can only visit once or twice a year. Others have demanding jobs that keep them too busy to help. Families aren’t perfect, many have troubled histories filled with anger and resentment. A son, daughter, mother or father may have good reason  to stay far away from someone who abused them in the past. Still someone must step up and when that someone is you your life changes dramatically. Even when the person you care for is a treasured spouse, parent or child the constant demands can become too much and the caregiver begins to fall apart.

Quotes by caregivers include:

“I haven’t had a good nights sleep in 4 days! I just want to walk away from it all, but I won’t.”

“Oh lord, I think my family might be on the verge of working as a team. Please make it true.”

“This is taking a toll on my marriage of 31 years and its breaking my heart.”

“I want my mom back. This is a nightmare.”

“I go along with her delusions, she’s upset. If I try to tell her the truth, she’s upset. Nothing is helping.”

“I’ll never understand the disease…but today I’m at peace. I pray you all are blessed with these rare moments too.”

And here’s a quote from me about one of the hardest days I had as a caregiver:

“I put my head in my hands and I cried. It wasn’t a dainty cry with gentle tears moistening my cheek. It was a hard-driving, gut wrenching, chest heaving, sloppy, ugly, sobbing cry. My nose ran and my eyes burned from the force of it and there were moments when I thought I might never stop. But I did. And then I started again. And again after that. And again after that, until my eyes were nearly swollen shut and my head pounded and my heart stopped aching. I cried. I let it out. But you know what? That didn’t make me weak.I was still the caregiver and I was thankful. … I was thankful for a good hard cry.”

As you can tell from these comments caregivers don’t have all the answers nor do they have unlimited resources or energy. They simply do what needs to be done. And that takes a very special person.

wisdom and energy

If you know a caregiver reach out and lend a hand to help or an ear to listen and let him or her know they are not alone.

Thank you for following The Imperfect Caregiver.

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There Really Are Angels Among Us

caregiving angels

When I first saw this picture I was reminded of a day when angels made their presence known to me. There had been an ice storm and Rodger was in the hospital again. Unable to get there so see him for a few days I was worried about him and how he would react upon seeing me. Although he often said he didn’t mind being in the hospital, he always resented it and acted out when he got home. I was becoming overwhelmed and prayed often asking God to send help. I prayed again as I drove the winding road over the mountain into West Virginia to the VA hospital.

The following is an excerpt from chapter 25 of  my book Confessions of an Imperfect Caregiver, the true story of my time as an imperfect caregiver.

“What did you say?” I asked, not sure I heard right.

“I asked if you need help. I understand that you’ve been caring for your father in your home for a long time and that his needs are extensive. Are you able to leave him to go to the store or go out to dinner with your husband? When was the last time you took an afternoon for yourself?”

“Um …” I stuttered. “Wow. Yes, I need help. Who are you again?” I wanted to ask him to turn around so I could check for wings, but I was afraid to appear cheeky to God.

“Here’s my card. My name is Rob Angelis, and I’m a social worker. I’d like to arrange some help for you…I can offer you in-home assistance if you’re willing to accept it.”

“Oh, I’m willing to accept it.Please tell me more about the program and when we can start.”

Yes, there are angels among us. Many are family caregivers. In the United States alone there are between 65 and 90 million family caregivers and the numbers grow every day.  Please do what you can to be supportive. The gift of time is precious to caregivers. A moment of respite is a godsend.  Be an angel and reach out to a caregiver.  Someone near you is praying for help.

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