I Don’t Like You!

15 Dec 2018 Leave a comment

by Bobbi Carducci in Alzheimer's, care giving, caregiver anger, Caregiving, Dementia, Dementia, family issues, Lewy Body Dementia

I don't like youWhen it’s one of those many very bad days and you the person you are caring for is pushing every button and grating on every nerve it’s natural to feel resentful and truly dislike her or him.

It’s okay to feel that way. Most of do more quite often thorough this life changing time. However, anger and resentment take a toll on us mentally and physically.  It’s exhausting to deal with all that emotion on top of everything else you do.

What is a caregiver to do on days like that?

  1. Walk away from the person in your care.
  2. Go to a quiet place. Go to the bathroom if that’s the only place you can be alone.
  3. Take a deep breath, let it out slowly. Repeat, Repeat. Repeat. Keep repeating until you feel calm.
  4. Think of one of the very best days you ever had with your caree. Picture it in your mind. When you are ready, perhaps when you being to smile, or cry, or simply wish for that day back, go get a cup of coffee or a glass of water.
  5. When you are ready – share that memory with your love one. Hold his or her hand if they are open to it. If they are not in a mood to share just then, it’s okay. You took a bit of time to take care of you. And maybe you have planted a seed in your caree’s memory that will take root later and give them a precious moment as well.

What’s Love Got To Do With It?

02 Feb 2018 2 Comments

by Bobbi Carducci in Alzheimer's, care giving, caregiver anger, Caregiving, Dementia, Dementia, Lewy Body Dementia, sandwich generation, understanding dementia

broken heart

When it comes to care giving, sometimes love doesn’t enter the picture at all. People with dementia behave in ways that try us to our very limits. Waking each morning wondering what new hell this day will bring causes anxiety, resentment, grief, and anger.

You may have loved your parent, your spouse, your sibling, or your grandparent for many years, but when dementia takes over and the person you knew is gone, replaced by a stranger trying to escape from you, refusing to bathe, and accusing you of all kinds of terrible things, love can be forgotten. Sometimes it’s gone for only a moment or a day or two. Sometimes it dies leaving duty in its place and we grieve while they still live. Sometimes we pray for the end to come and are overwhelmed with guilt for even thinking such a thing.

However, it’s not death we wish for, we don’t really want that.  We wish for the pain to end.  Theirs and ours.

It is because we care that we started this journey.  It is because we care we carry on when we think it’s no longer possible, even when we wake up each morning wondering what new hell this day will bring.  For deep inside they remain who they once were and so do we. We rise and enter their world ready to keep them safe another day.  And that’s what love’s got to do with it.

Please share your thoughts in the form provided

DROWNING

17 Oct 2016 1 Comment

by Bobbi Carducci in care giving, caregiver anger, caregiver humor Tags: , , ,

drowning

The Imperfect Caregiver is here to be a lifeline for you. I know how hard it is every day, how alone you feel, and how you wish that someone would truly understand.

You are amazing even on the days you feel as if you failed. When things change moment by moment you can’t be expected to know all the answers or to get it right every time. Sometimes anger is the only way to get through to a muddled brain. Cry when you must, laugh when you can, and know you are not alone.

 

 

Giveaway for Caregivers

12 Aug 2015 6 Comments

by Bobbi Carducci in Alzheimer's, care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, Lewy Body Dementia, looping, mental illness, nursing, sandwich generation, schizophrenia, stroke, Uncategorized, understanding dementia Tags: , , , , , , , , , ,

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

 

 

 

Remembering Rodger

26 Jul 2015 Leave a comment

by Bobbi Carducci in Alzheimer's, care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, stroke, Uncategorized, understanding dementia, women's issues Tags: , , , , , , , , , ,

Rodger Carducci

 July 26, 1926 – July 26, 2009

001

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

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

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

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

 

NO!

21 Jul 2015 4 Comments

by Bobbi Carducci 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: , , , , , , , ,

No

NO! Two letters that exude tremendous power. It’s easy to say and has a huge impact. It soon becomes a favorite word for people in our care.

It’s time to eat. Are you hungry?

No.

It’s time for bed. You need to rest.

No.

Bath time.

No!

Food they loved yesterday they want no part of today. Bedtime becomes something to be avoided at all costs. Take a bath? At the very suggestion a temper tantrum is bound to ensue. This is how it often is for them and for us. And it’s so damn frustrating for everyone. Admit it, you get mad. You begin to think they are doing this on purpose to get back at you for some unknown reason. You want to cry and scream and throw a tantrum of your own. I did. I did all of that and it didn’t help one damn bit. And after my little tirade had ended the guilt set in. How could I behave like that? He was sick. He couldn’t help it. What was wrong with me?

The answer to that is, nothing. Nothing was wrong with me and nothing is wrong with you.

The fault can be found in this quote from the 1967 film Cool Hand Luke

“What we’ve got here is a failure to communicate.”

People with dementia often do not understand the question and don’t know what to say in response and as a result take the easy way, or in this case, the easy word, out. NO becomes automatic.

When they can’t tell us what they are thinking or feeling their behavior becomes their way of communicating. What would you do if you couldn’t tell someone you were hungry, afraid, cold, or too hot? What if they kept asking you questions in a language you could not understand?

I know I’d become angry and want nothing to do with them. I’d dig in my heels and refuse to cooperate. I’d also hope that someone somewhere would figure out what I needed or wanted.

Sitting here now, writing about it instead of living it every day, I hope to be able to help you.

Diffuse, diffuse, diffuse, is always the answer. Like everything else in dementia world it isn’t easy. It’s simply what is.

If they say no to food take it away and offer it again a half hour later. Don’t ask if they want it, put it in front of them and walk away. If they have to be fed, get them ready and start feeding them. If they refuse again walk away again. Go back a half hour later and say, “I prepared the food you asked for. Here it is.” This worked for us until it didn’t. There came a time when he stopped eating altogether. It broke my heart and it will yours too but it happens when they are preparing to go. It’s time for hospice.

The sleep problem is one of the hardest for us all. They need and want less sleep, we need more in order to care for them and ourselves. If you are alone in this you have to rest when you can. If that means the housework goes, so be it. I wish I had an answer for this. I don’t. If anyone does, please post it here.

Rodger would refuse to bathe and wear the same clothes for days at a time. He would begin to smell bad. He insisted that people in the Old Country (Italy) don’t wash as often as people in America. There was no convincing him otherwise so I stopped trying. He would take a shower and change his clothes before going to the doctor. I used that a lot. He never realized he had a lot of canceled appointments after bathing. Sneaky but effective.

When he could no longer shower by himself I would start the water running, put his shower seat in the tub, and warm some towels in the dryer and lead him into the bathroom. When he saw everything was ready he didn’t resist. This may not work for everyone but it may work for some.

I recently read that water is invisible to some people with dementia. They don’t want it on them and they don’t want to drink it. I don’t blame them. I wouldn’t want some invisible substance pelting me either. Nor would I want to put something I couldn’t see into my mouth. It’s up to us to figure out a way to help them understand what’s happening. Use a shower wand and let the warm water flow over their feet until it is okay to move up the body. Keep the spray away from their face. If modesty is a factor allow them to shower in their underwear. They will get clean, the underwear will get wet and they will take it off and put on a clean set.

When it comes to drinking, try adding a few drops of juice in the water to give it some color.

Even if you try these things and they work, the NO! won’t go away entirely and all of this may be a bust for some of you. I understand that your situation is as unique as the person in your care. If there were a magic answer we’d all use it and this blog would go away. I’d miss it but I would celebrate too.

If you have a tip, a hint, a suggestion that works for you I invite you to share it in the comment section. We need all the help we can get and we need each other. Blessed be.

Don’t let Dr. Phil say NO to the Dr. Phil Challenge. Join me in pinging on him to use his resources to establish grant funds to help caregivers who need it most. www.DrPhil.com

 

Caregivers Are Beautiful

20 Jul 2015 Leave a comment

by Bobbi Carducci in Alzheimer's, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, understanding dementia, women's issues Tags: , , , , , , ,

beautiful woman

Caregivers are unique in every way. It is the caring we do that brings us together and links us in a way that cannot be broken. Know that the Imperfect Caregiver understands how special you are, even when you believe you are failing. Blessed be.

Dr. Phil, Help the Caregivers who need it most. http://www.drphil.com

Do Not Believe All The Things You Tell Yourself At Night

24 Jun 2015 Leave a comment

by Bobbi Carducci in Alzheimer's, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, elderly murder-suicide, family issues, home health care, Lewy Body Dementia, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: , , , , , , ,

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

 

 

A Much Nicer Way to Say What I Was Thinking

11 Jun 2015 Leave a comment

by Bobbi Carducci 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: , , , , , , , , , , , , ,

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.

The Face of a Caregiver

08 Jun 2015 Leave a comment

by Bobbi Carducci 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: , , , , , , , , , , , ,

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

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