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.
For Women and Men Caring for Loved Ones at Home
16 Feb 2017 Leave a comment
in Alzheimer's, care giving, Caregiving, Dementia, family issues, Lewy Body Dementia Tags: Alzheimer's disease, Caregiver Support, family stories, Parkinson's Disease, sandwich generation, Senior Health
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.
13 Jan 2017 Leave a comment
The following is a guest post by Minaal Khan, an 11th grade student at John Champe High School in Aldie, VA.
As teenagers in the age of technology, we need to be less materialistic and spend time with people as well as our favorite devices. People are who make the world a better place and who provide beneficial social interactions. We need to stop ignoring people and start using devices less often. Helping people can make you a better, worldlier person. This will make you truly appreciate the world. Hearing about someone else’s life can inspire you and may even change you for the better.
Teenagers need to start giving back to the community and helping others. We are at the age that will define us as adults. If we do not start giving back now, we will never do it as adults. We need to be thankful that we are healthy and appreciate what the generation before us has done to ensure that we are raised properly. They left us a great world that we can make even better by spreading kindness and selflessness. Everyone deserves to have someone help them when they are in need, so we should be kind and care for people who may have neurocognitive disease.
Caring for people with Alzheimer’s helps you feel accomplished as you do something good in the world. It also reassures the person you were caring for that there is hope and kindness left in our world when so often all we see on the news is violence.
Caregiving is an act of kindness that the other person will remember and builds self-esteem. It does not require you to sacrifice several hours, you can also spend time with your friends or family.
Helping someone who has Alzheimer’s will also help the family of the person who has Alzheimer’s because they will know that someone is taking care of their loved one. They will not have to worry about finding a reliable caretaker which increases the cost of care.
Caregiving is extremely rewarding and can change the lives of many people, the caregiver, the person with Alzheimer’s, and the family of the person with Alzheimer’s. It also gives you a sense of accomplishment because you have made a change in someone’s life. We need to help others as much as we can.
07 Sep 2015 Leave a comment
in care giving Tags: Caregiver Support, CrossFit, Depends, Dr. Phil Challenge, Flomax, Furosemide, Kimberly-Clark, Lasix, Oxytrol, Peter Biro, sandwich generation, sundowning, Tamsulosin, The Sandwiched Man
Today I welcome guest blogger Peter Biro. Peter is a caregiver. On his blog, The Sandwiched Man he writes about caring for his father and his children at the same time. Welcome Peter.
When Bobbi Carducci of The Imperfect Caregiver asked me to contribute a post to her blog (where this entry also appears), I settled early on a topic that has been much on my mind recently. Then, suspecting it might send some readers running for the exits, I decided to check my instinct by asking my Facebook friends about particularly unappealing cocktail party discussion topics. Their list included pap smears, what sub-department of finance someone works in, minutiae-filled marathon training and post-run recovery rituals, CrossFit (described as the Amway coffee chat of the 21st century – by the way, Amway was on there too), someone’s latest airline travel delay nightmare, detailed hole-by-hole recounting of a round of golf, and fibromyalgia.
Included on this list, indirectly, was incontinence. Unfortunately, this is actually what I am writing about. But hang in there with me anyway.
My father is about as physically bulletproof as a 91 year-old can be. He is independent, sharp, strong, and mostly mobile. However, what he is not is able to do is control his bladder. It controls him. Back in 2002 when he weighed 50 pounds more than he does now, he had congestive heart failure, for which he was prescribed Lasix. If you don’t know what Furosemide (that’s the generic name) does, it’s a so-called loop diuretic, meaning it tricks your body into squeezing more water out of you. Kimberly-Clark, the company that makes the adult diapers Depends, should send their manufacturer royalty checks. Then he’s on Flomax (aka Tamsulosin), which relaxes enlarged prostates. In other words, it also eases the flow of urine.
Maybe Depends should be sending royalty checks to these guys as well.
Compounding the problem is that he is now only mostly mobile. So, reaching the bathroom when the urge strikes sometimes just takes too long. Who among us has not reached the bathroom with mere seconds to spare? He loses those seconds to slow movement. When you live in a community like he does, this causes complaints from other residents, which is a big headache.
His physically slowing down also affects the often-recommended solution of using Depends: he physically has trouble putting them on and taking them off. That assumes my brother and I could convince him to wear them, which we can’t. And honestly, I almost don’t want to succeed.
I’m oversharing about my father’s incontinence because I have to deal with it and at times, it dominates my discussions with him. With time to reflect, I realize how insane this is. He is a whole human being, a man in full, and this is an imperfection. This is a man who remembers stories about family members, friends and me, a history that will die when he does, and this is what I’m spending our time together talking about? How much to cut back his Lasix by? Whether or not to try out Oxytrol (a female hyperactive bladder medication) as a solution?
As caregivers, however, we frequently focus on the imperfections. They are the urgent we tend to rather than the important. It’s a peculiar byproduct of being in a caregiving position. Put another way: I have a good friend my age who has related issues, and I promise you, we have never discussed Oxytrol.
We also tend to obsess on the imperfections in how we provide care, whatever form that takes. As a Sandwich Generation father, I find often myself evaluating and second-guessing how I provide for, communicate with, and otherwise help raise my children. I even write an entire blog about it.
In the end, however, what matters is not the imperfections but the thing in full.
As I mentioned, I want to thank Bobbi for the chance to guest-write on her blog, the title of which I have a new appreciation for. Sometimes writing about imperfections in others and in ourselves, helps put them in the right perspective. I know it has for me.
12 Aug 2015 6 Comments
in Alzheimer's, care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, Lewy Body Dementia, looping, mental illness, nursing, sandwich generation, schizophrenia, stroke, Uncategorized, understanding dementia Tags: Alzheimer's, Bobbi Carducci, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, Dr. Phil, Dr. Phil Challenge, Lewy Body Dementia, Parkinson's Disease, sandwich generation, sundowning
Free to Followers of The Imperfect Caregiver
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Caregivers need all the support they can get. One way to increase awareness is to show the world how many of us there are, including caregivers, those who have been caregivers, and those who may become caregivers. Our numbers grow every day and will continue to increase until cures for Alzheimer’s, all the other forms of dementia, and traumatic brain disease are found. One way to do that is to display our support for all to see.
To receive a free Caregivers Are Heroes bracelet: Follow The Imperfect Caregiver blog and send a request in the comment section below. Include your name and complete mailing address. Address will not be published on this site. Requests may also be sent to me directly via email at firstname.lastname@example.org No mailing costs or hidden fees apply. This is my gift to individual caregivers. Current followers are eligible for this free gift.
Dr. Phil, we need your help! Please use your resources and that of the Dr. Phil Foundation to create a grant to help caregivers most in need receive the help and support they so desperately need.
To add your voice to mine contact Dr. Phil at www.DrPhil.com
26 Jul 2015 Leave a comment
in Alzheimer's, care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, stroke, Uncategorized, understanding dementia, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Dysphagia, family stories, paranoid schizophrenia, Parkinson's Disease, sandwich generation, sundowning
July 26, 1926 – July 26, 2009
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: email@example.com
22 Jul 2015 Leave a comment
in Alzheimer's, caregiver, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, nursing, sandwich generation, schizophrenia, stroke, understanding dementia, women's issues Tags: Bobbi Carducci, Caregiver Support, Dr. Phil Challenge, Dr. Phil Foundation, respite care, sandwich generation
Someone posted the picture above on Facebook and I had to copy it and share it with you. Each night before I go to sleep I end my prayers by saying, “Show me the path you want me to take.” The road I end up on is often a lot longer and more difficult to travel than I would have hoped but I always end up exactly where I need to be. I have learned to pay attention to the messages I receive in response. Many, like this one, pop up in the most unexpected places.
On May 26, 2015 I watched a segment on the Dr. Phil Show where he featured young woman caring for her father who has had a devastating stroke. I was thrilled to see a caregiver being recognized. However, soon that feeling was replaced be deep disappointment and frustration when, instead of doing anything help her in any way, he offered her only the same trite advice caregivers know they should follow but have no means to do so.
Take care of yourself first. Get enough rest. Eat right. Exercise. Don’t feel guilty about taking time with friends.
I took a few days to cool down so I could respond without anger and on May 30, 2015 I issued a challenge to Dr. Phil to use his resources and the Dr. Phil Foundation to set up a grant program for caregivers most in need of help. You can the full text of that post here:
Since then I have been contacting him regularly via his website and adding a few words to my nightly prayer,“Dear God, show me the path you want me to take. Show me the way to reach Dr. Phil.”
And what did I get on my Facebook page but a clear image of a path captioned with this message: “Change will happen because you MAKE IT HAPPEN.” #DRPHIL
I am now more determined than ever to continue contacting Dr. Phil and do everything I can to convince him to get started on the path to establishing that grant.
In order to amp up the volume I ask that you add your voice to my efforts. Let him know I am not alone in asking for help. Please go to www.DRPHIL.com and encourage him to accept the Dr. Phil Challenge. Feel free to include a link to this post.
21 Jul 2015 4 Comments
in Alzheimer's, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: Alzheimer's disease, Bobbi Carducci, caregiver advice, Caregiver Support, Dr. Phil Challenge, Parkinson's Disease, respite care, sandwich generation, Senior Health
NO! Two letters that exude tremendous power. It’s easy to say and has a huge impact. It soon becomes a favorite word for people in our care.
It’s time to eat. Are you hungry?
It’s time for bed. You need to rest.
Food they loved yesterday they want no part of today. Bedtime becomes something to be avoided at all costs. Take a bath? At the very suggestion a temper tantrum is bound to ensue. This is how it often is for them and for us. And it’s so damn frustrating for everyone. Admit it, you get mad. You begin to think they are doing this on purpose to get back at you for some unknown reason. You want to cry and scream and throw a tantrum of your own. I did. I did all of that and it didn’t help one damn bit. And after my little tirade had ended the guilt set in. How could I behave like that? He was sick. He couldn’t help it. What was wrong with me?
The answer to that is, nothing. Nothing was wrong with me and nothing is wrong with you.
The fault can be found in this quote from the 1967 film Cool Hand Luke
“What we’ve got here is a failure to communicate.”
People with dementia often do not understand the question and don’t know what to say in response and as a result take the easy way, or in this case, the easy word, out. NO becomes automatic.
When they can’t tell us what they are thinking or feeling their behavior becomes their way of communicating. What would you do if you couldn’t tell someone you were hungry, afraid, cold, or too hot? What if they kept asking you questions in a language you could not understand?
I know I’d become angry and want nothing to do with them. I’d dig in my heels and refuse to cooperate. I’d also hope that someone somewhere would figure out what I needed or wanted.
Sitting here now, writing about it instead of living it every day, I hope to be able to help you.
Diffuse, diffuse, diffuse, is always the answer. Like everything else in dementia world it isn’t easy. It’s simply what is.
If they say no to food take it away and offer it again a half hour later. Don’t ask if they want it, put it in front of them and walk away. If they have to be fed, get them ready and start feeding them. If they refuse again walk away again. Go back a half hour later and say, “I prepared the food you asked for. Here it is.” This worked for us until it didn’t. There came a time when he stopped eating altogether. It broke my heart and it will yours too but it happens when they are preparing to go. It’s time for hospice.
The sleep problem is one of the hardest for us all. They need and want less sleep, we need more in order to care for them and ourselves. If you are alone in this you have to rest when you can. If that means the housework goes, so be it. I wish I had an answer for this. I don’t. If anyone does, please post it here.
Rodger would refuse to bathe and wear the same clothes for days at a time. He would begin to smell bad. He insisted that people in the Old Country (Italy) don’t wash as often as people in America. There was no convincing him otherwise so I stopped trying. He would take a shower and change his clothes before going to the doctor. I used that a lot. He never realized he had a lot of canceled appointments after bathing. Sneaky but effective.
When he could no longer shower by himself I would start the water running, put his shower seat in the tub, and warm some towels in the dryer and lead him into the bathroom. When he saw everything was ready he didn’t resist. This may not work for everyone but it may work for some.
I recently read that water is invisible to some people with dementia. They don’t want it on them and they don’t want to drink it. I don’t blame them. I wouldn’t want some invisible substance pelting me either. Nor would I want to put something I couldn’t see into my mouth. It’s up to us to figure out a way to help them understand what’s happening. Use a shower wand and let the warm water flow over their feet until it is okay to move up the body. Keep the spray away from their face. If modesty is a factor allow them to shower in their underwear. They will get clean, the underwear will get wet and they will take it off and put on a clean set.
When it comes to drinking, try adding a few drops of juice in the water to give it some color.
Even if you try these things and they work, the NO! won’t go away entirely and all of this may be a bust for some of you. I understand that your situation is as unique as the person in your care. If there were a magic answer we’d all use it and this blog would go away. I’d miss it but I would celebrate too.
If you have a tip, a hint, a suggestion that works for you I invite you to share it in the comment section. We need all the help we can get and we need each other. Blessed be.
Don’t let Dr. Phil say NO to the Dr. Phil Challenge. Join me in pinging on him to use his resources to establish grant funds to help caregivers who need it most. www.DrPhil.com
20 Jul 2015 Leave a comment
in Alzheimer's, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, understanding dementia, women's issues Tags: Alzheimer's, Bobbi Carducci, Caregiver Support, Confessions of an Imperfect Caregiver, Dr. Phil Foundation, Lewy Body Dementia, sandwich generation, Senior Health
Caregivers are unique in every way. It is the caring we do that brings us together and links us in a way that cannot be broken. Know that the Imperfect Caregiver understands how special you are, even when you believe you are failing. Blessed be.
Dr. Phil, Help the Caregivers who need it most. http://www.drphil.com
17 Jul 2015 Leave a comment
in care giving Tags: Alzheimer's disease, caregiver advice, Confessions of an Imperfect Caregiver, Dr. Phil Challenge, Dr. Phil Foundation, Lewy Body Dementia, Open Books Press, Parkinson's Disease, precious moments, respite care, sandwich generation, Senior Health, sundowning
Sometimes all you can do is laugh. The following is an excerpt from my book, Confessions of an Imperfect Caregiver.
When he first came to live with us, the only things he asked us to buy for him were Milk of Magnesia and prune juice. He had prescriptions for stool softeners and laxatives issued by his former doctors and continued by his new doctor. He constantly complained of constipation, greeting everyone he spoke to, including strangers, with “Hello. How’s everything? My bowels don’t move.” If he did happen to go, he made sure he told them about that as well, in great detail. It soon became clear he was taking far too much of the stuff. Every day, in the morning and at midday, he’d drink a large glass of prune juice, followed by Milk of Magnesia. Often he’d wait a few moments after taking it, look at his watch, and take some more. A few moments later he’d do it again. One day, after just telling me he’d had a bowel movement, I saw him drink another large glass of prune juice and reach for the Milk of Magnesia.
“Why are you taking that? “ I asked.
“For the constipation,” he said.
“But you just went.”
“That don’t count. It was all liquid.”
That’s when I knew I had to do something. No matter how we tried to explain it to him, he wouldn’t accept that it was the laxatives that were causing his problem. The more he took, the worse it got—and the more he worried—resulting in a vicious cycle that was interfering in his normal bodily functions. His psychiatrist said that it’s not unusual for a schizophrenic to keep track of what goes in and out of his body. In his mind, solid food was going in but nothing solid was coming out. That meant something was very wrong. Once I began to limit his access to prune juice and Milk of Magnesia, and started monitoring his use of laxatives, he started showing signs of stress. He paced and muttered to himself and began making frequent trips to the bathroom where he’d sit for hours, waiting for something to happen. I hated to see him like that, but I had to ease him off the stuff. His doctor tried to help by telling him that taking too many laxatives could interfere with his other medications and land him back in the hospital. He wasn’t buying it. When I wouldn’t give in, he complained to Mike, and when Mike backed me up, he called him one of the worst insults he could think of.
“You’re nothing but a dictator! You’re another Mussolini, that’s what you are!”
Later, after Rodger calmed down and we were getting ready for bed, Mike looked over at me and shook his head. “Mussolini? Now I’m Mussolini?”
I couldn’t hold it in any longer. The giggles I’d been trying hard to stifle came rolling out. “The Mussolini of laxatives!” I laughed harder. “You Fascist poop dictator!”
Mike looked at me in confusion for a moment, and then the hilarity of the situation hit him and he was laughing as hard as I was. I laughed so hard I got the hiccups, and that made us laugh even more. We ended up rolling on the bed, laughter feeding more laughter, until we were exhausted.
“Oh wow, I needed that,” I said when I was finally able to catch my breath.
“Me too,” Mike agreed. “I don’t know how you do it every day. He’s so damned stubborn. I’m glad I’m not like that.”
“Right.” I poked him the ribs. “Me either. I’m not stubborn. I’m determined.”
“Yes, dear,” Mike said with a grin. “Do you think you can determine to keep loving me through all this?”
“Sure, if you can determine to come over here and give me a kiss.”
“Sure thing, Babe.” He enveloped me in his arms and kissed me, both of still chuckling.
If you’ve have a winning moment that laugh you laughing, I invite you to share it here:
And if you want to vent – Please join me in pinging on Dr. Phil to use his resources to help caregivers via creating a grant for respite care and other kinds of help for caregivers who need it most. Send him a message at www.drphil.com
13 Jul 2015 Leave a comment
in Alzheimer's, care giving, caregiver, Caregiving, Dementia, Dementia, home health care, Lewy Body Dementia, Lewy Body Dementia, mental illness, nursing, schizophrenia, understanding dementia Tags: Alzheimer's disease, Book for caregivers, caregiver stress, Caregiver Support, Dr. Phil Challenge, Dr. Phil Foundation, family stories, sandwich generation, Senior Health
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 firstname.lastname@example.org
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.