Praying for you today and every day.
Today It’s All About You
13 Jun 2015 2 Comments
in care giving Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Dr. Phil Challenge, Dr. Phil Foundation, sandwich generation
Know that I think of you every day. And pray for you each night. You are not alone and I truly want to know how you feel today. In fact, I invite you to comment and share your thoughts, frustrations, rants, moments of clarity and grace, the funny stuff and the heartbreaking interactions that bring on that insidious guilt we have all experienced.
Blessed be, caregivers. Sharing your story may help a caregiver who is feeling very alone.
Join me in urging Dr. Phil to use his resources and the Dr. Phil Foundation to create a grant to provide help and respite for caregivers most in need.
To Contact Dr.Phil and add your voice to mine click on the links below.
@DrPhil
https://www.facebook.com/drphilshow?fref=ts
Despite All My Good Intentions, I’d Let Him Down.
12 Jun 2015 Leave a comment
in care giving Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, Confessions of an Imperfect Caregiver, Dysphagia, help for caregivers, Parkinson's Disease, precious moments, respite care, sandwich generation, Senior Health, sundowning
The first time I met him, when Mike and I first started seeing one another, he reminded me so much of someone dear to me that I felt as if I’d already known him for a long time.
Mike was living with his parents then, renting a large room on the third floor of the row house he’d grown up in, while looking for an apartment closer to work. We’d spent the afternoon together, and then he’d taken me to his room to show me his drum set and to play a few songs before I had to go home to my kids. Recently divorced and not used to dating, I was shy and unsure of myself. I wasn’t comfortable being there at all and was relieved when he played the last note and offered to walk me to my car.
Descending the stairs, I noticed just the toes of a man’s shoes, cheap, black, and rubber-soled. Then white socks, sagging around his ankles, came into view. His pants were navy blue. Since he was still seated, I couldn’t confirm that their seat was almost worn through, but I knew instinctively that would be the case. It’s just the same with the brown pair he wears when the blue ones are in the wash, I thought.
I watched him dig his heels into the footrest of his chair, easing the back upright so he could stand and offer a hand in greeting. A too-large brown belt circled his waist, welts of strain scarring the surface at various places, marking recent fluctuations in his weight. His shirt was a whisper-thin old thing, tucked inexpertly into the baggy pants he pulled up to a height only very old men find comfortable.
I felt a smile of recognition cross my face when his features came into view. Everything about him reminded me of my Uncle Louie. The fact that Louie was not just my uncle but my great-uncle, my personal godfather, and the only Italian in my big Irish family made him appear to be a man of epic proportions. He was shorter, darker, fatter, and far more interesting than any of the skinny, red-headed, freckle-faced men who chased after us when my brothers, sister, and cousins and I couldn’t contain our wild selves a minute longer and tried to uphold the age-old Celtic tradition of fighting like a bunch of hooligans.
Whenever I’d stay with my godparents for a weekend, Uncle Louie would let me sit on his lap while he drank a beer or a highball. He even let me have a sip now and then. I didn’t like the taste of either one but I never told him so. I had an idea in my head that sipping whiskey just naturally went along with watching the Friday night fights, and I wasn’t about to risk losing that privilege for anything.
While Uncle Louie’s gaze remained glued to the tiny black-and-white TV screen, I’d watch the crinkly lines around his eyes deepen each time he’d take a drag off his Camel cigarette and wonder how he got those puffy little bags to grow beneath his lower lashes like that.
My God, I thought as Mike began the introductions, even his chair looks the same.
“Dad, I’d like you to meet Bobbi.”
Shaking off the memory of one person in order to acknowledge the presence of another, I greeted the man who would become my father-in-law, convinced I’d seen something familiar in him. They have the same light in their eyes, I thought with affection.
Sitting in a hospital parking lot so many years later, I was just beginning to discover how very wrong I’d been.
Had he been pretending all these years? Is the real Rodger the one who announced to the nursing staff that I’m useless and no damned good? Does the medicine he takes every day allow him to be himself, or does it mask his true nature? Who is this man who lives in my house and paces the halls late at night?
As hard as I tried to block out the thoughts, I couldn’t stop the images from coming. Flashes of movie maniacs appeared, unbidden. Norman Bates from Psycho leered through a curtain of memory only to be replaced by rapid-fire clips of Jack Torrance careening through the halls of the Overlook Hotel in The Shining.
“Stop being ridiculous,” I said, shaking off the mood I’d created and starting the car.
As I turned onto the highway I told myself that my thoughts and the fact that I was now talking to myself in an otherwise empty car were more an indication of my mental state than his.
I knew from my research that schizophrenics aren’t the knife-wielding lunatics often portrayed in movies. Most of them are timid, introverted people who want to be left alone. Unfortunately, very often when they get their wish they end up homeless, in the hospital, or in jail. And sometimes, even when they aren’t left alone, those things happen.
Where did I go wrong? What did I miss and how can I make sure this doesn’t happen again? Those questions and more went unanswered as I covered the miles between the hospital and home, my mind and body too tired to cope with the guilt I felt at that moment. Despite all my good intentions, I’d let him down.
This post above is an excerpt from Confessions of an Imperfect Caregiver ©. Knowing I am truly imperfect inspired me to become a caregiver advocate and to create this blog.
Dr. Phil, Caregivers need help. Please accept the challenge and use your resources and the Dr. Phil Foundation to create a grant to provided real help for caregivers.
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
Help me get help for caregivers. Join the Dr. Phil Challenge. Post you comments here:
A Much Nicer Way to Say What I Was Thinking
11 Jun 2015 Leave a comment
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, caregiver advice, Dr. Phil, Dr. Phil Challenge, Dr. Phil Foundation, Dysphagia, Lewy Body Dementia, paranoid schizophrenia, Parkinson's Disease, precious moments, respite care, sandwich generation, Senior Health, sundowning
Shut … the … hell … up! That’s what caregivers would like to say. No not say, scream, when family members drop by for a short visit and begin to offer comments like this:
“She looks fine to me. Why do pretend taking care of her is harder than it is?”
“Mom told me her things are disappearing. What’s going on?”
“What do you mean it’s time to look at placing Dad in a nursing home? I promised him I’d never do that.”
“He’s lost a lot of weight. Why aren’t you feeding him enough?”
“I can’t take her. I have a very busy life. You get to stay home all day and watch TV.”
“I should have known better than to invite you! You always have some lame excuse.”
“We can’t make it for his birthday. We’re leaving for vacation in Italy that day.”
Caregivers, I invite you to share some the absurd things family and friends have said to you. Feel free to also add what you would like to have said in return and didn’t. (If responded with a great comeback feel free to share that too.)
Friends and family members – I challenge you memorize and follow the advice in the quote above. Dr. Phil, that goes for you too.
More Caregivers comment on the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish a grant to help the caregivers who need it most.
steven chandler – Comment: At 52 I am now a health care provider for my 91 year old father I’ve gone through all my savings is a constant struggle my sister took all of my father’s money in 2006 he was sick at the time and she convinced him to change his will and he gave her all the money I’m here for my father 24 hours a day and If it wasn’t for me the last year and a half he would be dead. I’ve put my life on hold I put my relationship of 8 years on hold and it’s overwhelming at times
Sherri Diller – Comment: I fully agree!! Dr. Phil, just take a look at the state differences that caregivers go through. Boils my blood. All types of government agencies claiming to help. I have worked in a number of nursing homes and I am a single daughter, caring for her single mom w/stage 4 alzhiermers,, both from a dysfunctional background. I love her dearly. But I dont trust the system. Your help is so needed. My mom deserves so much more. I am all she has. When she goes, I am the only one left.
Christina – Comment: Yes Bobbi, I will share your blog post. It’s so important. For some reason the word ‘respite’ goes unheard by many of those who are not caregivers. I don’t know how many times I was asked what I wanted and I answered the same thing every time, respite hours for myself so I could catch up on sleep or just sit and do nothing. The answer was always, yes, but what else? I was even recommended to take antidepressants! Thankfully I had learned to speak up and stand up for both myself and my husband by the time that was suggested. They never mentioned it again!
As caregivers, even though we most definitely save the state money we are not looked upon as the assets we are. My conclusion to that crazy reality is that we are actually stopping the money from flowing in a certain direction that may be advantageous to some (greed!). My husband would have been in a nursing home years before his passing if I had let them take him. No rime or reason to that since that would have cost thousands of dollars per month compared to a few respite hours for me. Fortunately he never had to go to a nursing home.
Pat DiCesare – Comment: Dr. Phil, I think your audience would benefit from hearing Bobbi Carducci’s amazing and emotional story of her experience of being a caregiver to her father-in-law.
Beth Anderson – Comment – If only there could be a place to go where, at no cost to the caregiver, they could bring their loved ones to, to be cared for, if only for an hour or two. The caregiver could get a workout in, run a few errands or just sit and have some quiet time. I wish you luck in your efforts to help caregivers, but some family members have no idea what that caregiver does, how they feel, what they need or how they struggle with day to day activities. Thank you again.
****
Every 26 minutes another person in the U.S. is diagnosed with Alzheimer’s disease or another from of dementia. The numbers are growing every day. Help me get help for caregivers.
When I Told You I Was Normal …
10 Jun 2015 Leave a comment
in Alzheimer's, caregiver, caregiver humor, Caregiving, Dementia, Dementia, family issues, Lewy Body Dementia, Lewy Body Dementia, looping, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: Caregiver Support, Dr. Phil, Dr. Phil Challenge; Dr. Phil Foundation, respite care, Robin Mc, Senior Health
I love this thought. For people with Alzheimer’s and other forms of dementia their perception is reality. Their normal is different from ours. One moment Rodger would be living with his son and his pesky daughter-in-law who insisted he use his walker and made him eat pureed food when what he really wanted was pita bread and a big juicy orange. “Pita bread is delicious you know.” The next minute he had gone back in time. He was young and strong living on a farm in Italy. He had no idea who I was or how I got in his house.
Sometimes he’d look up from the TV he watched hour after hour looking lost and confused. I always wondered where he was and what he was seeing when that occurred.
He liked to watch reruns of old television shows. Bonanza was one of his favorites. He said it reminded him of Italy. When Mike asked him why, he looked puzzled for a moment before replying, “The way they cook all the time.” I believe he was thinking of his mother and how she would make polenta before going to church each morning then coming home to prepare meals for the rest of the day.
He liked to look at the Blueridge Mountains from the deck or out the family room windows. “Those are hills,” he insisted. “In Italy we have mountains.”
The days when the voices came were hard for both of us. “They make me confused and suspicious,” he told me. He would never tell anyone what they said to him. “Nothing good,” his doctors told me. When I began to recognize the signs that he was hearing them I’d know “the others” were among us. I have to admit they me suspicious too.
All this was part of his normal. It became a new normal for me as well. Normal was never knowing what would happen on any given day. Normal was accepting that things were not as they appeared to be most of the time. Saying that either one of us was normal was often more than a slight exaggeration.
Dr. Phil, caregivers need help. Here are more comments from those who hope you will accept the Dr. Phil Challenge and use your influence and the Dr. Phil Foundation to provide grant funds to help caregivers.
Vicki Kleutghen – Comment: As caregiver to my husband of 38 years while he battles primary Plamsa Cell Leukemia ( an extremely rare – 100 US cases per year- and very very rare variant of Myeloma), I don’t want to hear the mantra “eat right, exercise, take time for yourself.” it’s meaningless unless someone else is there to provide support for the caregiver.
Take the advice one at a time:
Eat right. Would love to, but when spending hours/days/weeks sitting in waiting rooms, clinics, hospitals, you’re limited to what the vending machines offer. You can’t run out and get something healthier as who knows when your patient will be examined or called in for mess, etc. we all know how timely physician appointments run. At home, You’re often cooking anything and everything that might appeal to your patient. As my husband is receiving chemo, tastes change daily. As caregiver, I’m more concerned with making sure he gets enough nutrition and calories. As he is immune suppressed, fresh fruits and vegetables are off the table unless they carefully, individually washed in a bleach/vinegar solution. So if the smell of baked chicken and green beans makes him sick, it’s on to something else, often ending with protein shakes, soups or whatever else palatable. After trying all that, my meal often ended up as a dish of ice cream! Let alone shopping for food. my husband could not be left alone as a result of orthostatic hypertension so grocery trips consisted of him sitting in the car while I ran in and grabbed whatever was handy.
Exercise – see above! orthostatic hypertension means he would pass out suddenly. After he had two stem cell transplants (yes 2! within 2 1/2 months) he could not be left alone as he could spike a temperature suddenly. Exercise inside would have to squeezed in between routine care giving, routine household chores and, if there was anytime left, dealing with the piles of medical bills, insurance papers, etc.
Take time for yourself – hahaha! The stress and worry of caregiving, finances, etc makes it extremely hard to concentrate on anything other than your loved one. I read several books when I couldn’t fall asleep after a night in the ER , or a rough day of chemo side effects but today I can’t tell you a thing about them. I did knit while sitting in the back breaking chairs for caregivers – but couldn’t follow a pattern. I ended up with dozens of dishcloths, straight scarves… Totally boring items. Clinics often suggest caregivers run out while their patient is there – but the length of clinic visits vary… Some days 30 minutes, some days 8-10 hours with the possibility of leaving every hour or until the next set of labs come back.
The stress of caregiving takes a serious, unseen toll. Everyone’s concern (including the caregiver’s) is for the patient. As a caregiver, I couldn’t forgive myself if something happened to my husband while I wasn’t there. No one knows what might happen when. What if he went into convulsions while I was getting my haircut? (Which I didn’t do for over 6 months) what if we accepted one of the many meals offered by friends and neighbors and they hadn’t washed or cooked everything thoroughly and he came down with one of the many food born bacterium that can kill an immunosuppressed person?
Relying on friends and family is often suggested. Unfortunately we live over 1000 miles from any family – which in discussions with other caregivers is more the norm these days. My husband’s treatment required us to move 200 miles from home to a strange city where we knew no one. so much for the help of friends. As for emotional support, I found the most helpful to be other caregivers, in person or over the Internet, who truly understood what you were going through.
Dr. Phil, the platitudes of what a caregiver “should” do for themselves would be much more effective if practical, common sense solutions could be devised. Finances are often stretched beyond breaking with the costs of medical care, so indulgences like having food delivered or hiring home health aids are out of reach. Counseling is also a luxury that caregivers forgo in order to be sure that their loved one has everything that THEY need.
A program of Caregiver Assistance Grants would make an incredible difference in the lives of families struggling with the demands of caregivers. Please don’t make the blithe suggestions again that you did in your show. They are meaningless to anyone actively involved in caregiving and only serve to salve the guilt of others.
Kristina Hopkins – Comment: as a full time caregiver to my disabled husband, Mom to 2 daughters and help with my father in law, who lives with us, I appreciate advice from people, but please tell me when in my day am I suppose to take time for myself? It’s easy for people to give advice when they do not spend a day in my shoes or the shoes of wives like me.
Amy ganos – Comment: I would like to see this happen. Caregiving is very time consuming
Chris MacGregor – Comment: I am. 62-yo woman caring for my blind, hard of hearing & now in the end stages of dementia with Alzheimer’s. I’ve been living with her for almost 10 years now, and am sole FT caregiver with limited support from my siblings who mostly live out of state. As the disease has progressed, my mom has become severely anxious, afraid, and depressed. For the last year or so she is terrified to be alone. I can’t leave the house without her, and there are few people she trusts to stay with her. I have little time for myself, and often get an argument from my siblings when I try to take a couple of weeks twice a year. I’d love to take better care of myself, but my mom ALWAYS comes first. What solutions do you have for those of us in my position? I had breast cancer and radiation last summer, suffer from depression & anxiety (for many years), and have lived on Social Security Disability for way too many years.mwhere is the money & support supposed to come from to take care of myself first?
Lucinda Rieschick – Comment: Please get help to us caregivers. Not just u should do this and that. We need help. Not just we but me too.
Joan Holt – Comment: I also challenge Dr. Phil to offer his resources to help caregivers everywhere! This is so important especially if you’re your family members only support. Then it’s crucial that that person gets some ‘down’ time because if not, then if something happens to that person who will step up to do it?
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
The Face of a Caregiver
08 Jun 2015 Leave a comment
in care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, Dr. Phil, Dr. Phil Challenge, Dr. Phil Foundation, home care, Home Health, Lewy Body Dementia, Parkinson's Disease, respite care, sandwich generation, sundowning
I usually avoid cameras. I prefer the illusion that I look better than whatever shows up after the click or whirr that indicates my image has been recorded digitally or on film. Today I am shedding my vanity to show you what the face of a caregiver came to look like.
Bobbi in 2005 – three years as a caregiver. Four more to go.
When my father-in-law came to live with us I had a full time job. I went to the gym every day. I slept well and I ate right. All the things a caregiver is advised to do. Little by little it all fell away.
First the job went. My boss was understanding. I was even offered the chance to work from home most of the time and go into the office only as needed. We tried it for a while. It didn’t work. I was failing there and at home unable to give either the attention they needed.
Next to go was working out at the gym. A half hour drive there and back plus an hour workout was too much time away. It wasn’t safe long before he needed constant supervision. He’d forget things on the stove and, for some reason, he liked to dry wet tissues on the light bulb of the lamp in his room. The risk of a fire scared me so much I bought a baby monitor to keep an eye on him.
Eating right was next to go. My diet became much like that of an exhausted mother of a newborn or a temperamental toddler. Feed him and grab what you can. The remains of sandwich here, a few chips there. Every now and then a yogurt cup to convince myself nutrition hadn’t fallen by the wayside entirely.
Getting enough rest became a hope for the future. A future I didn’t dare admit I thought about for it meant he would be gone and to wish for this dreadful disease to be over was wrong, wasn’t it?
For seven years I did the best I could. He did the same. It took a huge toll on me. It took his life away. I miss him. I would do it again if needed.
It’s important that people understand how hard it is. Perhaps by sharing what the face of a caregiver becomes someone, maybe even Dr. Phil, will get it. Caregivers need help. Caregivers need you.
Bobbi on July 26, 2014 as we honored him on his birthday and shared his story with the public for the first time. I look years younger and feel it as well. I hope he was smiling along with me.
More voices urging Dr. Phil to help caregivers.
Diane Waterman – Comment: I didn’t see Doctor Phil’s show, but I can tell you from experience, being a caretaker to someone sick or elderly could never pay enough for what these people do. I cared for my sister with help from my children, for the last months of her life. She had Lung Cancer! I have Fibromyalgia myself and was dealing with daily pain. I did everything I could to take care of myself, if it wasn’t for my own adult children, I would not have survived. They gave me breaks night time. The whole year was cruel in many ways, I had to deal with a very dysfunctional family as well! I was relieved when she finally passed on July 10th 2013, not only for her , but for myself!! RIP Mona, I love you and miss you! Xoxo
Pamela Lynne Kemp – Comment: Thank you to everyone for sharing your story. You speak for so many of us.
Beth Anderson – Comment: I am full-time caregiver for my Mom who turns 85 in a couple of weeks. My mom has Alzheimer’s and Dementia as well as numerous other ailments. I have been Mom’s full-time caregiver since 2006 and after a recent fall, I am with Mom 24/7. I split my time at her home and bring her home with me for what she calls ” a mini vacation.” I am not a saint or looking for recognition, I just realize that it take a special person to take on the role of caregiver. I make most of her meals, take her to all of her appointments, set up her medications, bathe her, clean her after messy bathroom visits, take her for walks, take her to the nature center, the pumpkin patch, graduation parties, weddings and if my husband and I take a vacation, Mom goes along. I get occasional breaks, thanks to two of my sisters, but their work schedules are a usually a conflict. My husband has been so supportive through this chapter in Mom’s life as difficult and exhausting it may be. People do not know my story, as I do not know other people’s stories. With that being said, be kind to everyone. Offer assistance whenever you can. Smile, even though you don’t feel you have much to smile about, it could make all the difference in the world. Stay positive! Thank you to all caregivers, I am walking in your shoes! Love you Mom!
Sherri D – Comment: I’ve been caring for my severely disabled son for almost 15 years, with many more to go. Some say it’s my duty as his mother and they may be right, but it’s BC I LOVE HIM I have up my life for him. I’m coming out of a second marriage 😦 I don’t go anywhere with friends or much else. I used to be a dance teacher and dancing was my life. Now I’m a stay at home mom… Lonely and tired. With no relief in sight.
Linnea Hedborn – Comment: I am primary caregiver to my 95 year old mother. Every single day is a battle to be heard by her doctors and my family. I can’t let down for one second…not one. I have to keep so many different balls spinning in the air, no matter what my own financial situation (dire) or mental and physical health is. The latter is going fast. To be told to “take care of myself” is patronizing and unhelpful.
Stacey Belt – Comment: I have quit jobs to care for three family members who have now died. I now need help and find myself unemployed, homeless and about to fight melanoma for the second time. Guess what? I have no one to care for me, no one, zip, zilch, zero! I gave up everything three times to care for family and now the best thing that can happen is I die quickly since I am homeless, jobless, penniless and have no support!! That’s the thanks I get! But hey, God has a special place in heaven for me or so I’m told! What a great thing to look forward to right?!
To contact Dr. Phil directly and ask him to accept my challenge to offer real help to caregivers go to the following links.
@DrPhil
If I Tell You I Need Help – Do Not Take It Lightly
05 Jun 2015 Leave a comment
in care giving Tags: Alzheimer's disease, caregiver advice, Caregiver Support, Dr. Phil, Dr. Phil Challenge, Dr. Phil Foundation, Home Health, Parkinson's Disease, respite care, sandwich generation, Senior Health
Being told you are appreciated is something caregivers rarely hear. The people in their care are often to ill or too confused to be aware of everything their caregiver does every day. Family members who are too far away or too busy with young children, jobs and everyday life often take caregivers for granted. Far too often they drop in to question and or criticize decisions that only someone who lives with these terrible diseases know enough about can make.
Yes, appreciation would be nice. But, make no mistake, it’s not why they do it. They do it because the need is there. They do it out of love. Many spend years caring for people who have abused them in the past because no one else will. They don’t do it for appreciation but it would be nice to receive some once in a while.
More than the precious the moments of sincere appreciation caregivers need help. Don’t take my word for it. Read the following comments from caregivers responding to the Dr. Phil Challenge. (More to come tomorrow.)
Electra Posada – Comment: I am a paid caregiver, but I started by taking care of my father when he was dying from metastatic melanoma that had spread to his brain when he was 48. And yes, it was EXHAUSTING! I had one break for dinner out during the 5 months I was with him. I had to take away his keys and explain to him that he couldn’t drive any longer. I ended up having to try to feed him, but he was not eating by that time. I also had to clean out his mouth and brush his teeth when one of his tumors ruptured and gave him a massive nose bleed the night before. I was holding his hand when he died. I was 24 and not prepared for such things, but he wanted to stay home and wanted my sister and me to be his caregivers during the last 6 months he knew he had on this earth. This is just one story in millions people go through every day. We ask you to support and honor what we as caregivers do. We give a huge piece of ourselves, both physically and emotionally in order to make another person as safe and comfortable as possible in their time of recovery or facing the end of their lives. Thank you for helping us shed light on the difficult path we are called to take.
sheila hare – Comment: I challenge dr. phil to this as well good luck and hope to get answers I work as a cna since 93 and now I take care of mom too she is 88 my sis lives in another state their is no one else I work it live it but I still love it is my health going o yes ive gained weight again single who wants a fat girl and cant leave to go anywhere well hopeing he will create a spa for caregivers we talk about this all the time calgon take me away!
Dylan Fliers – Comment: I am a caregiver and as I watched this segment of the show on it’s original air date, I thought it was completely useless as well.
Jennifer Pepera – Comment: I challenge you too!:) I am a caregiver to my 81 year old Mother.I would love to see some shows regarding this topic please.
Renee Herndon – Comment: There are too many caregivers to count, both full and part-time who give selflessly and without pay, or often any breaks or support from anyone else. You let us down and didn’t adequately represent what we go through or offer any true help or advice.
Dawn – Comment: Dr Phil … I am a single Mom of a 22 severely disabled Son requiring 24/7 care. Additionally I work an extremely demanding job as an insurance consultant that is way more than a 40 hour work week. My back-up is my 13 old son. I eat right, try to get rest…we all know that. What we need is help. I’ve spent numerous days and hours advocating for our children with no voices at the Legislative Office Building in CT ..in an effort to get funding and assistance. What many don’t understand is the impact it has on the entire family unit. Please help us as you are so kind in helping others.
Tobi – Comment: I’m a Personal Support Worker and see the burnout of many family members taking care of their older parents and it is heartbreaking what they give up. I know of a special woman who has given up everything to live with her elderly parents and help them. she is also a very smart woman and knows that she should take better care of herself and she tries, but her parents are always on her mind. I think there should be a lot more education to the caregivers about programs to help the caregivers out more and make their life a little easier. I think they should be educated on the funding’s for renovations on homes to make it life easier for the elderly. Programs like multiple home care companies to come in and assist with chores and take the weight off the caregiver. There are companies that make nutritious meals and be delivered to your door. Apetito is one such company then there is meals on wheels. I think Community care should be paying more visits to the homes and talking to caregivers alone about what help they need. I’m always looking for ways to make my clients and their families life easier for them. It’s hard when you don’t know what direction to look in.
Michelle Morrison – Comment: I am full time carer of my father who has LBD, Parkinson’s. I hate how I need care yet the resources go only him the one over 65. It is a two way street. If I was not his daughter the person who baths him, washes the clothes, feeds, administers meds, etc. would expect compensation, and rest. I get advise. I get how dare you expect anything. Help those keep those with these conditions in a homey loving place not the pasture as my father has called nursing centers.
Beth Tomac – Comment: Where I didn’t see the episode, I do agree that caregivers need help taking care of themselves. I know this from personal experience as I was a caregiver for a 91 year old woman with early signs of dementia. I was a live in caregiver for 2 weeks straight without being able to take myself or the woman out of the house.
Yvonne Holloway – Comment: Please help we all need a break. I just got told by thr sister of my momI’m doing a terrible job and that I should get away as much as possible. Yet all medical personnel tell me she should not be alone. Plus my mom says she does not need any help.
a. fry – Comment: AMEN! I’ve been there, done that more than once. 10 years ago, it was my in laws ( RIP) Right now I care for not only my ill spouse who had a stroke, is diabetic, has severe eye problems ( NOT from the diabetes) and aphasia ( can’t understand half what I say), I also have a 30 year old son who is bi polar one that I help manage his finances and health care, etc.
We share housing and costs with another couple in the almost the exact same boat. If we were not supporting each other, sharing expenses and giving each other breaks so we can at least get to the grocery store without paying for help, BOTH our spouses would be in nursing homes! NO, there is NO covered care where we live for family caregivers. Our families ( and most of the general public) have NO concept whatsoever what REALLY goes on to spite us trying to tell them numerous times. One of our children was actually barred from the home due to stealing items, harassing for valuables and threatening us because they were more concerned about their “entitled” inheritance than whether we got proper care for our spouses. Do NOT coddle us, smile and say how fantastic we are. We do NOT want to hear it. We want our health care system to DO SOMETHING!
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
Caregivers Are Joining the Dr. Phil Challenge – Add Your Voice
02 Jun 2015 Leave a comment
in care giving, Caregiving, family issues, Lewy Body Dementia, mental illness, sandwich generation, understanding dementia, women's issues Tags: Alzheimer's disease, Caregiver Support, Dr. Phil, Dr. Phil Foundation, Dysphagia, elder care, Lewy Body Dementia, Parkinson's Disease, respite care, sandwich generation, Senior Health
Dr. Phil, I challenge you to use your huge resources and the Dr. Phil Foundation to develop a program of grants to help caregivers follow your advice to accept help, rest, and take care of themselves so they can continue to care for those they love so much that they are willing to sacrifice their health to for them. Respite care is vital for caregivers and you can help provide it.
On May 30, 2015 I issued the challenge above to Dr. Phil to provide real help for caregivers instead of the same old advice to rest, eat right, exercise, take time to herself and not feel guilty that he told a young caregiver on the Dr. Phil Show on May 26th.
While only two responses appear in the message box on that initial post, I received many more via email and I will be posting them a few at a time so their voices are heard.
Please share these blog posts with as many people as possible and encourage them to do the same. There is strength in numbers and ours are growing every day.
Dr. Phil, Caregivers need help!
Jennifer Bailey – Comment: This woman is under as much stress as the people dealing with abuse- the abused never knows when he or she may be hit next, and on guard when the abuser is near, but the caretaker has to care for someone, worry at the things they see going wrong in front of their eyes… and when we are gone we have to wonder if those things are happening. Even when we have respite care you worry because the person does not know your loved one as well, and because they are alone with a person and often either helpless or have the potential to become violent when confused. We sleep when the loved one is safe, and often wake up to any small sound, like a parent of a small child. We eat when we can in our tasks, and for many of us it’s what we can afford after limiting our work hours to care for the person. Platitudes and the advice on every caregiver’s website do not help us.
Susan house – Comment: We need help usually only one person steps up to care for their loved one but boy everyone else has a lot of advice..there is no help there is no relief unless you have lots of money to spend..my husband and I would love to go in a vacation and know my mom was safe and cared for but can’t afford $15per hour x 24hrs x however many days I’m 59 yrs old my husband is 60 if mom lives 10 more years what if those are the best ten my husband and I have left..because with the stress of taking care of my mom whom I love and will care for until I can’t..May be that stress will kill me..sometimes you just need a break you just need to breathe you just need to…..and there’s no affordable help and how do u know if you hire someone that they will treat your loved one they way they should.there are no regulations to assure this its hire at your own risk and pay crazy money to a person who may not care..yes Dr Phil the number of people caring for dementia people is enough to blow your mind and more everyday and younger everyday there’s no cure no help no relief. You have to look at a shell of your loved one everyday. I pray my mom has a heart attack. Or gets cancer..something that will take her fast and soon..it’s quality of life not quantity..I don’t want her to not know me..my dad died from Parkinson’s and if I get sick I’d rather have dad’s disease any day to this…please help up we are everywhere nationwide. Crying everyday for the loss of our loved ones and all we have is a Alzheimer’s dementia page where we all go to share and vent and look for support..from each other..no one care about the millions of loved ones and the caregivers..no one wants to see what we struggle with everyday..just pray it never happens to you or someone you love because you will end up just like us with no one to turn to…am I a horrible daughter because I tuck my mom in bed every night and tell her I love her and then go and pray please God take her tonight!! And if he does I will find her in the morning and beg him to bring her back cause life without her seems unbearable..and then I realize she’s almost already gone
Vixen Brumback – Comment: Please show more consern for caregivers.
Basia – Comment: Please provide additional support for caregivers.
Jean Ostrom -Comment: I would love to be able to exercise regularly. I haven’t had a full-night sleep in over a year. I haven’t gone to a movie, a concert or gone shopping with my friends. People keep telling me I have to take care of myself, but that is impossible when I am ALWAYS taking care of my husband.
Debbie Dunlap – Comment: I am a caregiver as well. We need help. Have the best insurance but so many rules it does us no good. However if my Dad was in Welfare we would have had help yesterday. Not a fair system
Audrey Besser – Comment: I care for my mother-in-law. I would be willing to brain storm a way to start a support group to help each other’s household to let caregivers have there needed rest and relax time, including sharing adult care . Yes disappointed about the lack of support by family & society.
Joanne Gerrard –Comment: Caregivers need the help and support and respite that gives them the help they need to give the care their loved one needs.
Margaret Smith – Comment: Caring for others is a challenge. We could use help at times.
Sherie Lynn Anderson – Comment: I support the challenge.
R F – Comment: As the mother of a 15 year old son with autism I wholeheartedly identify with this article. Being a caregiver is mentally and physically demanding. The caregiver is often isolated with little to no support from family and friends. Cheap advice is easy to shell out. People don’t know and they don’t want to know.
Note: I have not made any changes or corrections to these posts. They appear exactly as written. Individual email addresses are not included. However, I have the original posts and can provide them to Dr. Phil and/or the Dr. Phil Foundation on request.
Contact Dr. Phil:
Dr. Phil Foundation – http://drphilfoundation.org/
The Dr. Phil Show http://www.drphil.com/
Twitter @DrPhil
Facebook https://www.facebook.com/drphilshow?fref=ts
**** Read a Related Post : Stop Telling Caregivers to Take A Break
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