Get Enough Rest, Really People?

caregiver-stress

Tips on how to recognize and cope with caregiver stress appear on almost every caregiver website, blog, and column. Too bad none of the advice works.

Click on the link below to learn why.

Why Caregivers Ignore All That Good Advice About Dealing with Stress and What You Can REALLY do to help.

 

 

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

Remembering Rodger

Rodger Carducci

 July 26, 1926 – July 26, 2009

001

A year ago today I celebrated with family friends the release of Confessions of an Imperfect Caregiver.  The day was one of joy mixed with sadness as were so many of the days I spent writing it. We chose to release the book on Rodger’s birthday to honor him and his life.  I knew when I decided to share our story I would experience again all the emotions of living it. I told Mike to be prepared for an emotional rollercoaster. He knew all too well what that meant. He lived it too and would have his own moments of joy and regret. However, we agreed it was important to speak the truth about what it’s really like to be a caregiver.

I was determined to be brutally honest. I included the good days, the days of precious moment of clarity and remembrance he chose to share with us. However, I  also share the many moments of anger and doubt. I cry and pray and vent the frustration that comes with doing the best you can in an impossible situation for someone who sometimes loves you but far more often resents you for trying to save them from themselves.

Caregivers often asked, “Why doesn’t someone write a book that shows what it’s really like?”  Confessions of an Imperfect Caregiver does that. Caregivers,  you know what it’s like. You live it every day. It is now my wish is to get into the hands of your friends and family members in the hope that, in reading our story, they will better understand your situation and offer to help in any way they can.

Confessions of an Imperfect Caregiver is for caregivers, those who may become caregivers, those who have been caregivers and those who may one day need care. I hope our story helps everyone understand that you don’t have to get it right every time in order to succeed and sometimes being a little bit crazy is exactly what is needed. Available via Amazon and Barnes&Noble. To purchase a signed copy you are invited to contact Second Chapter Books in Middleburg, VA (540-687-7016) or via email: secondchapterbks@gmail.com

 

When You Fall to the Floor and Shatter

shattered

Caregivers and those in their care have been tipped over by the gusts of life.  Many of our loved ones have fallen and broken bones, many more have had memories break away piece by piece creating razor sharp shards of anger and resentment in their place. They lash out at us in their confusion inadvertently causing us to begin to break as well.

Often those around us fail to see the damage these devastating diseases bring about. Too often others see it and choose to “walk around the pieces, lest they cut themselves upon the scatter.”

Today and every day it is my hope that you have someone in your life to glue you back together.  If you are alone in this, know that I understand and I am here for you.

Feel free to reach out to me via the comments section on this blog or privately via email at bcarducci@comcast.net

Caregivers need help. Please join me in continuing the Dr. Phil Challenge and encourage him to use his resources and the Dr. Phil Foundation to create a grant to provide real help to caregivers who need it most.  Go http://www.drphil.com and leave a comment on his website supporting my plea.

 

 

I Prefer to Take Life One Panic Attack at a Time

panic attackPanic attacks, migraine headaches, clumps of my hair clogging the shower drain. These are all things I experienced as a caregiver.  Stress was sapping my mental and physical reserves as his conditions worsened. I needed help.  People said, “Take care of yourself. Eat right. Exercise. Get enough rest.”

Sure, I thought.  I’ll get right on that.

Are you kidding me?  If I were to be true to my instincts right now this page would be filled with some very strong, unbecoming language describing how useless advice is when it isn’t followed up with the resources to make a difference.

I’ve issued a challenge to Dr. Phil but it is also for family and friends of caregivers everywhere. The people caring for others now will be the ones needing care next. How dire their health issues will be are being greatly influenced by the degree of stress they are experiencing during the weeks, months, and years they are giving so much of themselves. You can make a difference.

If you can give much help, give much. If you can give only a little, give a little. A warm meal, short nap, a visit now and then will be appreciated more than you know. A full night’s rest is a blessing. Time to go to the grocery store and take in the aroma of fresh fruit could be like a vacation for someone who hadn’t been able to do it in months.

Please help!

More Comments for Dr. Phil in response to the Dr. Phil challenge:

Ann  – Comment: I agree. I am a cancer patient and my energy level is very low.

My husband is the caregiver for me and his mom who has dementia. I would love to see some real programs that would help caregivers cope. My husband is a loving caring person but I know at times it seems very overbearing to him.

Tammie Marett – Comment: I take care of my bedridden husband. He has no other family and we live over. 8 hours from mine who couldn’t help much anyway.  I would love to take your advice bit its all the same mumbo jumbo. There is no money for caregivers. My husband is a vet.  They offer me 2 respite days a month of only 6 hours each time.  You offered no solutions just the same tired advice.  This problem is going to get larger as the baby boomer generation ages.

Kristi Simmons – Comment: I am living the Oreo life. My husband and I are caregivers for my mother for the last 5 years.  I also have a 21 year old a 10 year old and a 6 year old.  My husband and I both work 40 hours a week. I have 3 siblings. My oldest brother takes care of my mom’s finances, which creates its own tension sometimes.  My other two siblings do nothing to help and often feel like it’s our responsibility to care for mom since we live with her rent free.  They don’t understand the mental and physical drain this can be.  We’re lucky, my mom is good natured and fairly easy to care for the majority of the time, but it’s hard to be caregiver, mother, teacher and wife 24/7 365.   We’ve been lucky enough to have friends that mom is comfortable enough with to stay with her so we caN take short trips with our kids occasionally.  Unless you’ve done this you have no clue how exhausting it is

Kathleen Tingler – Comment: I agree with your take on offering advice and not an alternative.  I am a full time care taker and have no one that wants to step up and help me find a way to catch a break even for an hour or so a week.

Rhonda Partin-Sharp – Comment: Oh, I agree with this article – gives us caregivers a way to take care of ourselves – when you are going on two hours of sleep a night because that is the ONLY way to get just the priorities done because you are taking care of two elderly parents – don’t tell me to get sufficient sleep.  That’s insane.  We need to stop telling the caregivers what to do better and need to start telling the lazy family members (every caregiver support group will tell you that it usually ends up being one person doing it all with not only no help from the family but judgment and pressure from the family) what they need to to do help.

Shannon Watstler – Comment: Yes please, caregivers do not always need unsolicited advise, just real quality help ! Many friends & family abandoned, compare their normal every day situations & give excuses “why they can’t help” or “they just want to know how the patient is & then have to go”. It’s a exhausting & never ending job, non-paying & sometimes you truly feel hopeless. If I ever have to go thru this again, I will def do things a little different & ask for more help. many people don’t handle situations of thinking about their own mortality-that’s sad ! How would they like to be in the same situation & hear excuses of why someone can’t help or just abandonment. It’s a lonely journey that no one understands except those that go thru it & are forced to deal with it head on every day even when they’d enjoy a few minutes of time for themselves.

Dawn D. Ames – Comment: This comment was right on.  My husband needs 24/7 care.  Getting out to get my owe scripts and groceries is extremely  difficult.  My children and a few friends try to help, but with his needs, the it is not always possible.  It has been three years.  It would be nice to have a couple of hours for church or to go out with friends in those times when I feel safe enough to leave him. Thanks Bobbi.

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

Not Everyone Agrees With the Dr. Phil Challenge … Many More Do

Yesterday, in response to my post titled Caregivers Are Joining the Dr. Phil Challenge  I received the following comments from  a man taking exception to my efforts to get Dr. Phil to help.  Presented here are his views and my responses. I respect his right to express his opinions just as I respect the comments of the caregivers that I will post as they come in. Including some at the end of this very long post.

Note: I wonder if David  realizes how many of his statements  highlight exactly why I am pleading with Dr. Phil to respond. Read on and see for yourself.

David Blair – You never were clear on what you thought Dr. Phil should have done for this woman? He obviously has a huge network of resources, but mostly for people with drug & psychological problem. After all that’s his profession. When he offers his support during the show it’s largely an effort to showcase, well advertise for these centers. And the guest gets free help as a result.  He doesn’t work with any day spas? How can you be certain the show didn’t help her financially, probably not something they would have aired.

The Imperfect Caregiver (Bobbi Carducci) – I am asking the Dr. Phil Foundation to establish grants to offset the costs of respite care. Even a few hours a week would be an enormous help for so many.

David Blair – Well, as some of your commenters pointed out – there are currently millions of people in that situation. You don’t think Dr. Phil has THAT kinda money. This goes on in nearly every family in this country.  My mom spent and amazing amount of time caring for my grandparents. I think it’s a situation many find themselves in. Families have to step up. Dr. Phil can fix a lot, but he can’t make family members compassionate if they don’t choose to be? Just asking you consider the scale of what you are expecting.

The Imperfect Caregiver – Bobbi Carducci – I hear you. I don’t expect him to fund it all. I’m asking for an opportunity to use his resources to get the message out about what it’s really like and offer SOME funding via the Dr. Phil Foundation for some in desperate need. He dropped the ball when he asked that young woman what was the hardest part of caring for her father and she said, “lifting him several times a day,” and his response was to tell her not to feel guilty about wanting time for herself. Do I think Dr. Phil has THAT kind of money? No. Do I think he can inspire others to help? Yes, I do. Just as I don’t expect him to end domestic violence himself or fix every drug addict alone. He does assist some and that is what I am hoping for and asking from him. Get the dialog and the support moving.

David Blair – I think he did use his resources to get the message out. I admit, probably the only show I watch regularly. THAT”S RIGHT! (don’t care what anyone think either.)

He’s a smart guy. Every time I’m wondering what the fu@k’s he gonna say about that? But he always says the right thing – and always a 180 from what I’d say)

Not meaning to sound unsympathetic to your cause but trying to set up a fund then try to decide (based on I don’t know what) who should get the money the logistics of which are unimaginable! Not his job or responsibility. His only responsibility is to entertain me at 3 o’clock.)

The Imperfect Caregiver – Bobbi Carducci – Thank you for your thoughts on this. Enjoy the show.

 Read More Comments by Caregiver’s Joining the Dr. Phil Challenge:

Donna Thomson – Comment: Great idea, Bobbi!  Have you written to the foundation?  Where are they based – perhaps a personal meeting or skype meeting would be appropriate.  Well done for identifying this opportunity!

doggonedmysteries Margaret Hauser –  Comment: It’s easy to give advice when you aren’t the caregiver. I consider myself lucky when The Curmudgeon, my husband who has secondary progressive Multiple Sclerosis, is having a good enough day where I can leave him alone for a couple of hours.I can’t afford to have someone come in and give me a break. We live on his meager disability income because I can’t leave him alone for more than a couple of hours at a time. Some days not at all, depending on how bad his day is.

I haven’t had a real break in over a year. How about if Dr. Phil comes over and takes care of The Curmudgeon for a week and finds out what it is really like?I bet he wouldn’t be quite so free with his ‘advice to caregivers on taking care of themselves’ when he finds out that is not an easy thing to do when you have to take care of a home and a patient. I am not now nor have I ever been a nurse, so this is truly difficult.

Lisa Land – Comment: I am a caregiver for my 89 yr old father and saw the show as well. I wondered the same thing, why did he NOT help this girl? So many of us including myself are caregiving without an income and living off of the income of our carees, which is Social Security and is keeping us just above the poverty level. I am forwarding this to everyone I can to sign and get recognition.

Cathy Kelly – Comment: I am a caregiver for my friend and also was for his parents because there wasnt anyone else.  I am stuck here trying to get him help so I can get out. 8 years worth of ongoing stress is far too much. Help! Please! I dont want to go down with the ship.

Laura Walsh – Comment: amen to that , my husband can not be left alone, after massive stroke , bed ridden , hoyer lift to wheel chair  , canot speak or do anything for hmself  … we know what to do , but never get a chance to do it , all my energy is put into care giving and cooking and cleaning and ordering meds and doing every single need for my husband , all day long , every day , and in the middle of the night , every night … going on 4 years now !!! wearing pretty thin !!! It is almost an insult for someone to say remember to take care of yourself first , so you can take care of him , I know they mean well , but >>>>>

Jennien Seymour – Comment: well Dr Phil..unless you have given up your independence, place to live, and your job…to care for someone 24/7….you have no idea what it is like…there for you can not give advice on something you have no idea about.

Janet Ogaick – Comment: as a caregiver to my father until he passed away your advice truly means nothing what I needed was someone to help so I could have time for me time to be a mother to my 4 children time to unwind I don’t regret being my fathers caregiver he did for me and it was my turn to do for him but an hour or two a week it would have been wonderful

Carlene Reaves  – Comment: Thank you Dr. Phil for recognizing caregivers and how awesome they are. It would have been nice if you would have helped her do what you advised her to do. Much love!

Theresa Loder – Comment: as a caregiver for the past 20 years .. Parents, mother in law , and now for my husband who has many health issues, I often hear( at least once a day) for me to take care of myself..

I do my best to do that .. But it’s very hard for people not caregiving to understand the moment to moment challenges we all face.. Yes , it would be nice it someone who has a platform , to offer actual help to caregivers..

It is very hard to find any kind of respite out there..

Currently I am trying to get well from Bronchitis I picked up either in the hospital or nursing home where my husband had been recently.. He ended up with pneumonia..

This is the first time I had to go to the ER for myself .. We caregivers would appreciate any and all actual help we can receive by way of letting people know the challenges we face on a minute to minute basis. Most all of us are going to be faced with this someday… There needs to be lots of discussion about all things caregiving… Sooner rather than .  positive thoughts to all caregivers out there.. Theresa Loder

Contact Dr. Phil and add your voice to the Imperfect Caregiver challenge: http://drphilfoundation.org/  http://www.drphil.com/   @DrPhil   https://www.facebook.com/drphilshow?fref=ts

 

More caregiver comments tomorrow.

Where Have My Friends Gone?

friend therapy

Being a caregiver for a loved one is lonely. From morning til night, and often well beyond, caregivers are on call even when our loved ones demand we leave them alone. We become the bad guys. The woman or man who insists they bathe when they don’t want to and serve them food when they have no wish to eat. Our parents or our spouses resent being treated like children. Their losses are devastating and they resent being reminded of them. Days go by when they don’t say a word. Some can’t. Others were told long ago not to speak to strangers and that is who we have become.

Knowing we are busy and often unable to leave the house our friends drift away. Not intentionally. It simply happens. They visit a few times only to find us distracted and harried, on constant alert for a call from our loved one or the sound of that horrible thump that signals another fall.  Sometimes we cry and then refuse to follow well intentioned advice to take time for ourselves and get enough rest. We aren’t as much fun as we used to be. I get it.  But still we need you. If only for a few minutes now and then we need you to come by and share a cup of coffee with us. We need a bit of adult conversation. Having a friend say, “Tell me about it,” and then sit back and listen as we speak is a moment of respite we cherish.

Please, even if you only have a few moments, be a friend to a caregiver today. Someone is waiting.


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NaBloPoMo November 2014

 

 

Moment of Respite – A Dog Comes to Visit

Dog give me strengthI didn’t know how he would react but I was ready to try anything to brighten his day and relieve some of the stress we were both feeling. His daily walks were a thing of the past. His diet was severely restricted and either he wasn’t sleeping well or he was sleeping all the time. Mike and I discussed it and decided to contact some people we knew who trained therapy dogs and request a home a visit. We had heard stories of how people in nursing homes and hospitals would smile and begin to share stories about pets they had when the friendly animals came to visit. Nurses and staff members reported that patients were happier and more alert for hours, and in some cases days, after they dogs left. We felt it was worth a try.

I wish I had a picture of that visit. I had let Rodger know he was going to have two visitors, one of them a dog. He was skeptical at first.

“What am I gonna do with a dog? I can’t walk no more. Who will clean up after it?”

“The dog isn’t going to live here. He’s coming for a short visit.”

“Why?”

“For something different. To help pass the time.”

“Do what you want. I hope it doesn’t pee on the floor.”

Rodger rarely smiled but when a beautiful golden retriever slowly entered the room and sat at his feet he couldn’t help himself.

After introducing herself and her dog, who was wearing a vest identifying him as a therapy dog, the volunteer sat quietly and allowed Rodger and Casey to get acquainted.

Shortly after the smile appeared Rodger slowly leaned over and tentatively began to pet Casey.

“Did you have a dog as a pet when you were a boy?” the volunteer asked.

“No. No pets. In the old country dogs are for working. Not like here where pets are spoiled.”

And then he began to talk. He spoke about life on the farm. For a while he went back to a time and place where he was able to walk outside in the sun and work up an appetite for homemade pasta and oven fresh bread. He sat up straighter and the light so rarely seen in his eyes made an appearance. I could feel my neck muscles relax as I watched the transformation. He may not have had a pet growing up, and to him dogs were meant to work, but what he didn’t seem to notice was that this one was working too. Casey was working a little bit of magic for both of us and for that I was grateful.

For more information on the positive impact dogs can have on loved ones with dementia go to:

http://www.alzheimersproject.org/About-Us/News-Photos-and-Calendar/Latest-News/Pets-and-Dementia

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NaBloPoMo November 2014

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 – Just for Today

Maxine - Throw in the towel

Caregivers, just for today leave the towel where it landed. I know you are doing everything you can to maintain your home, your family, the person in your care. You do much more for others than you do for yourself. Just for today let go of every little thing that doesn’t have to be done right now.

Maybe you were taught to make your bed every day. Just for today leave it unmade. 
Instead of cooking dinner order a pizza.

Let the dust settle on the coffee table. It will be there tomorrow.
Stay in your pajamas.
Let someone else take out the trash.

Consider the things you do automatically because you have always done them … pick at least one … and just for today let it go. Use those few moments to have a cup of coffee with Maxine and absorb a bit of her attitude. Do it just for today. Do it for you.

 

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