Do Not Believe All The Things You Tell Yourself At Night

sleepless woman

I know the voice of doubt. It comes in the night to question and criticize. It tells us we are not good enough or smart enough to do this.  It may come as a whisper or scream unceasingly. Either way it keeps us awake going over the activities of the day.

“How could you lose your temper you know he’s sick?”

“I can’t believe you said that to him.”

“How could you forget to tell the doctor about that?”

“You think you’re so smart, why is she getting worse every day?

Yes, I know the voice of doubt. I know how we question ourselves all the time. We expect so much of ourselves it’s impossible to live up to our expectations.  When family members do it we know they are full of s**t and we get angry. When we do it to ourselves we start to believe. We lose precious sleep judging ourselves harshly.

I know the voice of doubt. She whispered to me every night. She lied.  I hope by writing this post I will be able to convince you that the voice keeping you awake at night is no better than mine was.

You are a caregiver and you do not have to be perfect to do what is best for the person in your care.  And, sometimes being a little bit crazy is exactly what is needed in the moment.

What are some of the things you say to yourself late at night? Share them here. It may help you and other caregivers silence the voice and allow you to rest when you can.

I continue to plead with Dr. Phil to use his resources and the Dr. Phil Foundation to create a grant to provide caregivers with assistance.

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

 

 

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Please Be Kind

Encouragers wanted

Be kind to everyone may be too tall an order even for the most saintly among us. So, I am not going to ask that of you. I do ask that you be kind to the caregivers. The women, men, teens, young adults, paid caregivers, family caregivers, friend caregivers, etc. Be kind to them all.  Try as they may, caregivers never win. The ending of their story is inevitable. The pain is overwhelming.

Many will ask, “What can I do to help.”  The answers to that are too numerous to list so here are a few suggestions.

Stop in for a visit. Prepare a hot meal or have one delivered once a month.  Sit and talk with the person needing care so the caregiver can take a nap. Go to the grocery store.  Give the caregiver a day off to rest. Think, “What would I need most in his or her situation?” and do what you want people to do for you.

Be kind to caregivers. Become and encourager. Behavior is communication. What is your behavior saying to the caregiver in your family?

Oh, and help me get Dr. Phil’s attention. Encourage him to accept the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish grants to help caregivers most in need of respite. You can send him a message via the following social media links.

http://drphilfoundation.org/  http://www.drphil.com/ @DrPhil

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

 

 

 

How Do I Get Him To Eat?

why train in my mouth

This picture made me laugh. I remember playing that game with my little ones when they were reluctant to eat.  Food was strange. Textures felt weird in their mouth. Green stuff tasted okay but the orange glop? Disgusting.  Sweet stuff? Now we’re talking.

Sound familiar caregivers?

I remember Rodger telling his doctor that he loved vegetables. It was true. He was a farm boy used to eating them fresh from the field.  When he developed severe swallowing problems and his diet was limited to pureed foods and thickened liquids I made a lot of thick vegetable soups and stews, doing all I could to make sure they were full of nutrition and tasted good.  So, when the doctor asked which vegetable was his favorite I was surprised to hear him say, “Pudding, the white kind.”

For several days he’d been eating smaller and smaller portions of the purees, pushing my hand away when I tried to get him to eat more. I was at a loss as to what to do.

“Pudding, the white kind.” I thought.

If pudding was what he liked, pudding he would get. It was thick enough he could swallow it. It didn’t melt into a liquid like ice cream would, putting him at risk of aspirating and it was made with milk. There was nutrition in there and he liked it.  We both were happier when I helped him eat a few bites of the pureed food and as much of the pudding as he wanted.

There comes a time when we have to let go of what was and embrace what is.  Foods they once loved no longer taste good and when that happens many of them want only sweet things. Ask the person in your care what his or her favorite food is. You might be surprised and inspired by the answer.

The Dr .Phil Challenge Continues

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, 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.

 Blog readers: Here is the link to the Dr. Phil episode referenced in this post.  The segment on caregiving starts at around the 34 minute mark. 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.

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 Agony of Relief

For seven years I was his constant companion. The one he railed against and accused of trying to poison him. The one he insisted was his best friend on the good days when he was lucid.

“Without her I’d be a gonner,” he would say.

In the beginning I was his chauffer taking him to his many doctor appointments. At first we took the 40 minute drive over the mountain to the VA hospital every three months.  As his various ailments, including dementia and Parkinson’s disease, progressed the appointments came more often.  Dysphagia came next. He could no longer swallow properly. His diet was limited to pureed food and thickened liquids. He had trouble swallowing his saliva. Aspiration pneumonia resulted in several long hospital stays weakening him further and requiring doctor visits once a month.  Then he had a heart attack and a pacemaker was inserted. Blood clots developed in his arm as a result. Frequent blood tests to monitor his clotting ability meant more trips to the hospital. Eventually we were going every week.

He continued to fail and eventually he entered home hospice care and we no longer made the drive.

He was hearing voices again and becoming more delusional as the dementia progressed and the medication he had been taking since his early twenties for schizophrenia began to lose effect.  Still, we prayed for a miracle comeback. He’d done it before. We’d think we were losing him, prepare for the worst and just when we began to lose hope he would gather the inner resources and strength that had defined him all of his life.

He’d gone from farm boy to defiant resister of the Gestapo who had taken over his country. He moved to America as young man to start a new life. He enlisted in the Army to serve his new homeland. It was while in the service he had his first psychotic break.

This brilliant man who spoke seven languages and held advanced degrees in literature and mathematics would never be the same. Electric shock treatments, ice baths, experimental treatments and increasingly strong antipsychotic drugs robbed him of memory and kept him sedated at all times. After thirteen years he was released. He married and raised two sons. He was a hero in so many ways.

As he began to fail I did too. Sleepless nights, constant stress, the guilt that came with knowing I couldn’t save him took its toll. The two of us were barely functioning.

I fed him. Changed his soiled Depends. Wiped his bottom. Bathed him. Dressed him. Sat up all night listening to him breathe.  The night he died Mike and I sat with him, holding his hand, doing everything we could to keep him comfortable.

In the early hours of his 83rd birthday he took his last breath.  This amazing man who had challenged me in so many ways and taught me so much about what real strength of character looks like was gone.

It took a while for the tears to come.

“What’s wrong with me?” I asked my husband.

And then it started. A slow trickle at first, followed by the first stabs of grief. I cried so long I wondered if it would ever stop. When it finally did, I wiped my eyes, blew my nose and started over again and again and again. It was only after I had exhausted my tears and my body that I could face the awful truth. It was not only grief that brought me to my knees. It was the agony of relief. His suffering was over and that meant I was finally free.

Intellectually I know my feelings were normal under the circumstances but there is still a little voice inside that continues to ask, What’s wrong with me?”

I continue to ask for your support and comments in response to the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish a grant to offer real help to caregivers most in need.

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

http://drphilfoundation.org/  http://www.drphil.com/   @DrPhil

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

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

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