For Women and Men Caring for Loved Ones at Home
28 Nov 2014 Leave a comment
in care giving, caregiver anger, caregiver humor, caregiver murder-suicide, Dementia, elderly murder-suicide, family issues, home health care, looping, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Confessions of an Imperfect Caregiver, Dysphagia, elder care, family stories, help for caregivers, home care, Lewy Body Dementia, Open Books Press, paranoid schizophrenia, Parkinson's Disease, prayer, precious moments, sandwich generation, Senior Health, sundowning, Thanksgiving
At the end of the day I spent so much time going over what I might have done better and trying to figure out how to fix an unfixable problem I lost sight of the truth. Together we were doing our best and that was all anyone could ask of us.
Caregiver, be kind to yourself you are doing something wonderful every day.
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02 Nov 2014 Leave a comment
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: a place for mom, Alzheimer's, Bobbi Carducci, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Dysphagia, family stories, God, health, help for caregivers, home care, Home Health, in home caregivier, Lewy Body Dementia, Open Books Press, paranoid schizophrenia, Parkinson's Disease, prayer, precious moments, respite care, schizophrenia, Senior Health
As a caregiver I spent a lot of time praying. I doubted my ability to carry on and castigated myself each time I lost patience or failed to protect my father-in-law from another setback. While I recognized his frailty I forgot about my own. I expected perfection where there could be none. I prayed for guidance and asked God to show me the path he wanted me to take. There were many days when I doubted He heard me. Often I wondered if I was worthy of His help and attention. I cried a lot. But always, when I was at my lowest, help arrived in some form and I knew my prayers were heard. Today I share this prayer for you, the caregiver, so you know you are never alone and you have done well.
Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.
You hold shaking hands and provide ultimate care.
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.
You are resilient, amazing, and beauty unexcelled.
You are the caregiver and you have done well.
Prayer shared courtesy of A Place for Mom
The following is an excerpt from Confessions of an Imperfect Caregiver:
There were only two cars in the church parking lot when I pulled in, but considering it was a weekday afternoon, that wasn’t surprising. After dipping my fingers into the holy water font and making the sign of the cross, I slipped into a pew near the front of the church. For several moments I simply sat there, taking in the lingering aroma of incense, candle wax, and furniture polish. …
“Our Father, who art in Heaven,… ” I prayed, the words taking on a new importance as tears of frustration and guilt streamed down my face. “Thy kingdom come. Thy will be done …”
All right, God, if it is Your will that I take care of my father-in-law, I’m happy to do it. But You have to help me. I’m new at this, and I’m afraid I’m not doing it very well. He’s a sick old man, and he’s not trying to be difficult. I know that. So why do I feel so angry?
“… And forgive us our trespasses, as we forgive those who trespass against us.… but deliver us from evil … ” I sobbed, my heart breaking for both of us. Why couldn’t I be stronger?
“Help me to be more patient and understanding. Guide me to make the right decisions when it comes to his care. Help me find the right words to soothe him when he’s confused and frightened. Please take the anger away. It frightens me. It weakens me, and I need to be strong to do this. I don’t want to let Mike down, and I can’t let Rodger down. He has nowhere else to go. Please, hold me in your love and light and show me the path you want me to take. Amen.”
My prayer complete, I struggled to stop crying, but the harder I tried the harder the tears flowed. Just as I began to fear they’d never end, exhaustion and embarrassment forced me to gain control of myself. Get a grip, I scolded myself. You’ve had a good cry, and it’s time to go home.
I’d left my purse in the car and had nothing to mop up the watery mess I’d made of myself, leaving me with no choice other than to wipe my nose on my sleeve. I didn’t notice the near-silent approach of the only other person in the church until a tiny elderly woman, dressed all in black, touched my shoulder and handed me a bunch of tissues.
“God bless you,” she whispered as she turned and walked away.
Yes, God bless me. I sure do need it.
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01 Nov 2014 1 Comment
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, caregiver advice, caregiving, Confessions of an Imperfect Caregiver, elder care, family stories, heart attack, help for caregivers, HelpGuide.org, home care, Home Health, in home caregivier, Lewy Body Dementia, NaBloPoMo, NaNoWriMo, Open Books Press, Panic attack, Panic disorders, paranoid schizophrenia, Parkinson's Disease, respite care, sandwich generation, Senior Health
November is a big month for writers. It’s time for NaBloPoMo and NaNoWriMo – National Blog Posting Month where bloggers set a goal to write a post a day in November. For me that’s a big challenge. I try to post once a month but sometimes the days get away from me and it just doesn’t happen. I’m eager to see how this project works out and what effect it will have on my time management going forward.
NaBloPoMo was inspired by NaNoWriMo – National Novel Writing Month wherein writers are challenged to write a novel in the month of November. This annual contest has resulted in many published novels and inspired thousands of writers to complete their work in progress even if they didn’t finish by the end of the month. I wish all the novel writers and bloggers starting this challenge good luck and good writing.
Here I go.
The first time I had a panic attack I thought I was dying. I woke from a restless sleep with my heart racing and a heavy feeling in my chest. Then my fingers began to tingle and before long that sensation moved up my hand and into my arm. At first confused and then terrified by what was happening I woke my husband. Call 911, something is very wrong! As I waited for the ambulance to arrive my heart raced faster and faster and each time the speed increased I became more frightened. Cold sweat poured out of me. I’m having a heart attack!
This can’t be happening. I have too much to do. I can’t do this to my family. How could my husband cope with the loss and care for his father? I was not ready to leave my grown children or my grandchildren. I prayed for the ambulance to arrive in time while Mike paced.
“Your heart is fine, the EMT said after examining me thoroughly. What’s going on in your life that’s causing you so much stress?
Caregivers know the answer to that. Constant vigilance. Sleepless nights for days and weeks on end. Second guessing by family members who aren’t there every day like you are. Loved ones who not only resist but openly fight your efforts to care for them. It all piles up and you take it all in. Swallow it down and start another day. Eventually something has to give and your body sends out an urgent signal. I’m in trouble here. And you are. Left untreated the same stress that leads to panic attacks can result in a heart attack. The good news is there is treatment. The key is to understand what is happening and why.
After that terrible scare I read all I could about what had happened to me. I quickly learned to recognize the onset of a panic attack. When I sensed one coming on I’d go to a quiet room, lie down and take slow deep breaths to calm myself. Over time it became easier and the attacks lessened in intensity and duration. Now they occur rarely and dissipate in minutes. I’m lucky. I can control my panic attacks without medication. For some the attacks are so severe and frequent medical intervention is needed. If that’s the case with you, don’t hesitate to consult your doctor and get treatment. You will feel so much better if you do.
****************************
Most of the symptoms of a panic attack are physical, and many times these symptoms are so severe that people think they’re having a heart attack. In fact, many people suffering from panic attacks make repeated trips to the doctor or the emergency room in an attempt to get treatment for what they believe is a life-threatening medical problem. While it’s important to rule out possible medical causes of symptoms such as chest pain, heart palpitations, or difficulty breathing, it’s often panic that is overlooked as a potential cause—not the other way around.
For more information about panic attacks and how to treat them go to http://www.helpguide.org/articles/anxiety/panic-attacks-and-panic-disorders.htm
To read more about Bobbi and her experience as a caregiver purchase a copy of her book, Confessions of an Imperfect Caregiver. Blog followers receive a discount when ordering directly.
.Click here for Exclusive 20% Discount for Blog Followers
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10 Oct 2014 Leave a comment
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Bobbi Carducci, caregiver, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Dysphagia, elder care, family stories, God, hallucinations, health, help for caregivers, Home Health, Lewy Body Dementia, Open Books Press, paranoid schizophrenia, Parkinson's Disease, precious moments, respite care, sandwich generation, Senior Health
It was one year ago today that The Imperfect Caregiver blog appeared for the first time. Within days I started hearing from other caregivers and caregiver bloggers and with each new connection I learned more about how enormous this community is and how little the people around us know about what we do and the impact it has on our society.
As a writer I try to inform through story telling. In doing so I hope to connect with caregivers and the people around them. So often our family members don’t understand what it’s like to care for a seriously ill loved one twenty-four hours a day for a period of many months or years.
Siblings live far away and can only visit once or twice a year. Others have demanding jobs that keep them too busy to help. Families aren’t perfect, many have troubled histories filled with anger and resentment. A son, daughter, mother or father may have good reason to stay far away from someone who abused them in the past. Still someone must step up and when that someone is you your life changes dramatically. Even when the person you care for is a treasured spouse, parent or child the constant demands can become too much and the caregiver begins to fall apart.
Quotes by caregivers include:
“I haven’t had a good nights sleep in 4 days! I just want to walk away from it all, but I won’t.”
“Oh lord, I think my family might be on the verge of working as a team. Please make it true.”
“This is taking a toll on my marriage of 31 years and its breaking my heart.”
“I want my mom back. This is a nightmare.”
“I go along with her delusions, she’s upset. If I try to tell her the truth, she’s upset. Nothing is helping.”
“I’ll never understand the disease…but today I’m at peace. I pray you all are blessed with these rare moments too.”
And here’s a quote from me about one of the hardest days I had as a caregiver:
“I put my head in my hands and I cried. It wasn’t a dainty cry with gentle tears moistening my cheek. It was a hard-driving, gut wrenching, chest heaving, sloppy, ugly, sobbing cry. My nose ran and my eyes burned from the force of it and there were moments when I thought I might never stop. But I did. And then I started again. And again after that. And again after that, until my eyes were nearly swollen shut and my head pounded and my heart stopped aching. I cried. I let it out. But you know what? That didn’t make me weak.I was still the caregiver and I was thankful. … I was thankful for a good hard cry.”
As you can tell from these comments caregivers don’t have all the answers nor do they have unlimited resources or energy. They simply do what needs to be done. And that takes a very special person.
If you know a caregiver reach out and lend a hand to help or an ear to listen and let him or her know they are not alone.
Thank you for following The Imperfect Caregiver.
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25 Sep 2014 1 Comment
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's, Alzheimer's disease, angels among us, Bobbi Carducci, caregiver, caregiver advice, Caregiver Support, caregiving, Confessions of an Imperfect Caregiver, dementia, elder care, Family, family stories, health, heaven, heaven is real, help for caregivers, home care, Home Health, home health aide; miracle, Lewy Body Dementia, nursing, Open Books Press, paranoid schizophrenia, Parkinson's Disease, respite care, Senior Health, social workers
When I first saw this picture I was reminded of a day when angels made their presence known to me. There had been an ice storm and Rodger was in the hospital again. Unable to get there so see him for a few days I was worried about him and how he would react upon seeing me. Although he often said he didn’t mind being in the hospital, he always resented it and acted out when he got home. I was becoming overwhelmed and prayed often asking God to send help. I prayed again as I drove the winding road over the mountain into West Virginia to the VA hospital.
The following is an excerpt from chapter 25 of my book Confessions of an Imperfect Caregiver, the true story of my time as an imperfect caregiver.
“What did you say?” I asked, not sure I heard right.
“I asked if you need help. I understand that you’ve been caring for your father in your home for a long time and that his needs are extensive. Are you able to leave him to go to the store or go out to dinner with your husband? When was the last time you took an afternoon for yourself?”
“Um …” I stuttered. “Wow. Yes, I need help. Who are you again?” I wanted to ask him to turn around so I could check for wings, but I was afraid to appear cheeky to God.
“Here’s my card. My name is Rob Angelis, and I’m a social worker. I’d like to arrange some help for you…I can offer you in-home assistance if you’re willing to accept it.”
“Oh, I’m willing to accept it.Please tell me more about the program and when we can start.”
Yes, there are angels among us. Many are family caregivers. In the United States alone there are between 65 and 90 million family caregivers and the numbers grow every day. Please do what you can to be supportive. The gift of time is precious to caregivers. A moment of respite is a godsend. Be an angel and reach out to a caregiver. Someone near you is praying for help.
04 Sep 2014 Leave a comment
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Andrea Bocelli, Bobbi Carducci, caregiver, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, elder care, Family, family stories, Home Health, iPod, LA Times, Lewy Body Dementia, Music and Memory, music therapy, Open Books Press, paranoid schizophrenia, Parkinson's Disease, respite care, sandwich generation, Senior Health, Sound of Music, Susan King
Sitting in the park on a recent summer night, listening to a local band playing the music I danced to as a teen I started to sing along. Singing isn’t something I normally do unless I’m alone in the car with the windows rolled up. I firmly believe it’s best for everyone and if you ever heard me sing you would surely agree.
I felt safe singing in the open air, joining others like me overcome with the joy and nostalgia of our shared musical history. Before long the band ramped things up and went into a medley of rock songs. Soon people were on their feet dancing. A little one, barely able to walk, moved to the beat, her tiny legs bouncing as she clapped with glee. Standing beside her, her grandparent’s did the same.
“More!” She said when the music stopped. Her grandparents agreed.
The song playing that night may have become imprinted on her memory, just as it had on mine years before. Many years from now I hope she hears it and feel the same freedom she did that night. Music speaks to us at every age and the music of our youth carries us back in time like nothing else can. I once told my husband that when my generation gets old, instead of the songs of the forties and fifties heard in nursing homes now, the place will be rocking to the music of the Beatle’s and the Rolling Stones. Women and men will smile as they remember holding their sweetheart while dancing to love tunes like My Special Angel by the Vogues or My Girl by the Temptations.
I didn’t realize when I said it how true it would turn out to be and how the music of the past can enhance the lives of the elderly, especially those with Alzheimer’s and other forms of dementia and patients with Parkinson’s disease.
My father-in-law was extremely introverted due to his long history of mental illness. When Parkinson’s disease and dementia entered the picture things got worse. He often went days barely speaking and could become quite suspicious and hostile. One thing that always calmed him and brought him out of his shell, at least for a while, was listening to opera. A special favorite of his was Andrea Bocelli. As soon as he would hear Bocelli begin to sing his posture would change. Normally quite rigid in expression and movement he would relax. First his shoulders would move down away from his ears and his fingers, so often curled, would rest open on his knees. Then the smile would come and he’d begin to speak of life in Italy and the days spent with his family there. He was a lighter, happier version of himself. The effects of the music usually lasted long after he indicated he’d heard enough. It was as if he became a bit of the man he once was and each time it happened it was a gift for him and for us.
I was delighted to find out we were not alone in this discovery. Watch the following video and be amazed at what the sound of music can do,
An article in the LA Times by reporter Susan King dated July 21, 2014 titled, ‘Alive Inside’ also illustrates music’s joyous power for dementia patients and shares information on how music helps reawaken memories and emotions in dementia patients. To read the complete article click here:
http://www.latimes.com/entertainment/movies/la-et-mn-alive-inside-story-20140731-story.html
An iPod is one way to provide music for your loved one. The organization, Music and Memory has a program titled: Help Spread the Music and Give New Life to Someone You Love.
“At MUSIC & MEMORY℠, we help elders in care facilities suffering from a wide range of cognitive and physical challenges find renewed meaning and connection in their lives through the gift of personalized music. No one wants to end up alone and isolated in a nursing home. It’s hard enough to lose someone you love to Alzheimer’s or other forms of dementia. It’s terrifying to think you could end up there yourself, someday.
For more information on this wonderful program go to: http://musicandmemory.org/”
I often hear from caregivers whose loved ones wander at night or become combative when sundowning. Listening to music may help ease these behaviors making life easier for them and their loved ones.
More information on music and dementia can be found on the following websites.
http://www.latimes.com/entertainment/movies/la-et-mn-alive-inside-story-20140731-story.html
http://www.alzheimersweekly.com/2014/06/new-movie-trailer-on-music-alzheimers.html
https://www.youtube.com/watch?v=NKDXuCE7LeQ
If you have an experienced the benefit of music with a loved one I ‘d love to hear about. Please contact me via the form below.
27 Aug 2014 Leave a comment
in caregiver anger, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Bobbi Carducci, caregiver, caregiver stress, Caregiver Support, caregiving, Confessions of an Imperfect Caregiver, dementia, Dysphagia, elder care, faith, family stories, God, help for caregivers, home care, Joshua1:9, Lewy Body Dementia, Open Books Press, prayer, schizophrenia, Senior Health
“I don’t get it. Why is so hard to do good work?”
“I don’t know, honey,” my husband said. The creases in the corners of his beautiful brown eyes deepened, indicating he was trying to think of something to say that might help me with my struggle to understand why offering loving care to his father was always met with such resistance. He didn’t come up with an answer that night and neither did I
For weeks I prayed and asked God that same question. Why does it have to be so hard?
I got my answer one Sunday morning. When the priest began to speak after reading the gospel, I felt that he was talking directly to me.
“I’ve been hearing the same question over and over lately. ‘Why is life so hard? Why is it so difficult to do good works?’ A chill ran through me. God had heard my cry.
“I’m here to tell you,” the priest lectured, “No one ever told you it was supposed to be easy. There are many examples in the Bible of people being tested to their very limits. It’s in adversity that you grow in spirit. It’s when you step up and do the hard stuff God asks of you that you earn your place in heaven. So quit whining and do what you know has to be done and remember you are not alone. He is there for you when you need Him.”
After that, when things got very hard I tried to make light of it by telling Mike, “I earned my place in heaven today.” He believed it, even when I didn’t.
At first I couldn’t take the words of the priest to heart. I wanted a better answer. But, as things went on and the more I repeated the words, “I earned my place in heaven today,” the more at peace I felt. I was not alone. God was with me and by doing the hard work I was earning the grace to make it possible. Not easy. But easier. What I thought in moments of weakness and exhaustion to be impossible became possible. Being a caregiver is not a job that we can do alone. We need help from our community, our family and our friends and in the moments when all of them are too busy or too far away there is one who is always there.
“Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.” Joshua 1:9
07 Aug 2014 7 Comments
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, caregiver, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, elder care, Family, family stories, help for caregivers, home care, respite care, sandwich generation, Senior Health
Or that I’m a bad person not fit to be a caregiver.
When I felt angry and resentful for the first time it was devastating. Where was it coming from? Why was it coursing through me when the crisis had passed and things were getting better?
“What’s wrong with me?” I cried and I prayed.
The guilt that accompanied those feelings threatened to overwhelm me. I didn’t know if I could go on. If I should go on. I was ashamed of myself for being so weak.
What I didn’t understand was that my feelings were normal. The anger was a passing storm sweeping away debris that had been piling up inside me. It was a way to release the stress and worry that comes with being a caregiver.
I loved Rodger very much, even when it wasn’t easy to do so, and he felt the same way about me. What mattered in the end was not the passing storms but the love that inspired the commitment I made to care for him and the trust he had that I would be there when he needed me.
I smile every time I look at the picture that inspired this post. How fitting it is for caregivers and everyone else. It applies just as well to parents and children, husbands and wives, friends, brothers and sisters, everyone we care about enough to invest our emotions in. I hope everyone I love will always know, “Just because I’m mad, doesn’t mean I stop caring.”
Rodger That! Caregiving Podcast
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