Giveaway for Caregivers

Caregiver Bracelet

Free to Followers of The Imperfect Caregiver

(US Residents Only)

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 Address will not be published on this site.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 bcarducci@comcast.net  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

 

 

 

On the Run Today

Thank You For CaregivingIf you are alone in caring for a family member or friend. If you are feeling unappreciated. Please remember that the Imperfect Caregiver is working for change by speaking out. I am very proud to be a caregiver advocate and today I have two wonderful opportunities to speak for caregivers.

This morning I was filmed and interviewed by Voice of America. In May I was a participant in the Human Book Project held at Gum Spring Library in Aldi, VA. My purpose in being there was to  speak to “readers” who checked out Human Books to learn about their unique life experiences.  I spoke about what is closest to my heart, being a caregiver for a seriously ill family member.  Today another “reader” interviewed me and the short video will appear on the Voice of America website in about three weeks. I will post the link once the video goes live. You will also hear from another Human Book, Maimah Karmo  speak about her very different story of strength and service to others.  I am proud have met Maimah  through the Human Book project and now have her as  my friend.

This evening I will be speaking to people at  the Purcellville Baptist Church in Purcellville VA. about caregiving and how they can help caregivers in our community.

We need more advocates and since I have not yet heard from Dr. Phil in response to my Dr. Phil Challenge, I am very interested in speaking with many more church and civic groups.

Last month I spoke with members of  the Dulles South Rotary Club in Aldie, VA  and they are now developing a service project on behalf of caregivers. (More on that soon.)

I am available to speak to groups  in person or via Skype or FaceTime depending on distance and time available. There is never a charge for these events.

All you need to do is contact me via email bcarducci@Comcast.net to arrange a date and time.

Blessed Be Caregivers

 

 

A Much Nicer Way to Say What I Was Thinking

open your mouth only if

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 …

normal exaggerated

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

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.

caregiving pic Bobbi

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 now

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.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

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

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

If I Tell You I Need Help – Do Not Take It Lightly

Appreciated

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!If I tell you I need you

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.

Caregivers Are Joining the Dr. Phil Challenge – Add Your Voice

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 DunlapComment: 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 GerrardComment: Caregivers need the help and support and respite that gives them the help they need to give the care their loved one needs.

Margaret SmithComment: Caring for others is a challenge. We could use help at times.

Sherie Lynn AndersonComment: 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

 

 

 

 

Dr. Phil – You Let Caregivers Down and I Challenge You to Do Better

When I learned that one of the guests scheduled to appear on the Dr. Phil Show on May 26th was a young caregiver I made it a point to watch.

Featured in the later part of the show was a young woman named Stephanie who is a caregiver for her father who has had a massive stroke.  She wakes him each day, dresses him, moves him from bed to chair, and feeds him,tends to all his waking needs and then gets him ready for bed each night.  She does all this while attending college. She is a remarkable young woman.

She is an excellent representative of the millions of young adults and the millions of teens and older adults caring for family members every day.  It was wonderful to see any caregiver recognized on your show.

Unfortunately neither you, Dr. Phil, nor Dr. Freda Lewis – Hall, Chief Medical Office of Pfizer, did more than express your admiration and offer the same old advice caregivers hear every day.

Make sure you eat right and exercise. Get enough rest. Make time to be with friends. Don’t feel guilty for wanting time away. You must take care of yourself before you can take care of another.

 All true. Every caregiver knows this. What the advice givers, including you and Dr. Freda Lewis-Hall, fail to do is provide a way for all this to happen. Most caregivers would love to follow this advice if only they could.

Caregivers don’t need advice. Caregivers need help. They need family members to understand what they do every single day and not judge them or their care decisions based on short occasional visits.

Caregivers need regular respite care so they can follow the advice so often given.

Dr. Phil you let us down when you fell into the role of advice giver and failed to offer this young woman and the millions of other caregivers a way to follow it. I watch your show and I see you regularly offer gifts of counseling and resources for help in their local communities to people addicted to drugs and alcohol and to families dealing with emotional and physical abuse when their stories air.

Why didn’t you do that for this young woman?  You could have been a beacon of light for caregivers everywhere instead you let us down. Why?

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.

 https://www.youtube.com/watch?v=lXR1PddbrfQ

If you support my challenge to Dr. Phil to do more than offer advice to caregivers please let him know via Facebook and/or Twitter and any other social media sites you use, and by sharing this post with everyone you know and asking them to do the same.

 

 

 

 

Previous Older Entries