06 Jun 2015
by Bobbi Carducci
in care giving, caregiver, caregiver anger, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Dr. Phil, Dr. Phil Challenge, Dr. Phil Foundation, Dysphagia, elder care, family stories, Parkinson's Disease, respite care, sandwich generation, Senior Health
Panic 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
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26 May 2015
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, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, caregiver advice, Caregiver Support, sundowning
Before Rodger came to live with us I thought I knew who I was. Up until that time I had a great track record of weathering life’s challenges. When faced with hardship I did what I had to do to solve the problem or adapt to the changes. I cried and prayed often but never did I feel as if I’d lost myself.
I didn’t know I’d become infected by his illness too.
When he wandered I followed in his footsteps. When he lashed out at me I lost my temper and shouted back only to be overwhelmed with guilt once the storm had passed. When he refused to bathe for days I’d find myself staring at my disheveled reflection in the mirror. Exhausted from lack of sleep and afraid of what he might do if I left him alone long enough to take a shower I looked, and probably smelled, as bad as he did. Time after time we were admitted to the hospital together. Him to a bed me to an uncomfortable chair beside him. We spent days and weeks together in that place.
As he continued to fail it felt as if pieces of me were falling away too. I had to face the truth. We would lose this battle.
When Rodger died he took the person I used to be with him and left behind a part of himself and this changed and hopefully smarter me. The one writes our story. The one who would do it again for a family member if needed. The one who would not expect more from either of us than we are capable of giving.
Blessed be the caregivers, both who you are now and who you are becoming.
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21 May 2015
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, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, home care, Home Health, Lewy Body Dementia, Open Books Press, paranoid schizophrenia, Parkinson's Disease, precious moments, respite care, sandwich generation, schizophrenia, Senior Health, sundowning
Just as there are many paths up the mountain there are the many paths of caregiving. How ours will twist and turn depends on the reason it began in the first place and how the one in our care responds to the many obstacles in the way. Will he reach for me to guide him along the way or will he insist on refusing my help only to fall and accuse me of pushing him?
Every day, around each new bend, we are faced with something unexpected. It could be a breathtaking moment when the air clears and the sun breaks through the clouds of confusion and he smiles. I feared I’d never see that twinkle again. “Thank you, Lord,” I whisper.
Far more likely it’s another loss making every step we take together more difficult. Our path is longer and far more arduous than we could have imagined. It is also the way that works for us. We figure it out as we go along.
The last thing we need is “the one who runs around the mountain, telling everyone that his or her path is wrong.”
Unfortunately there seems to be as many of them as there are of us. If you are dealing with someone like that send them this Hindu proverb and tell them the Imperfect Caregivers says, “You are not helping. You are making things more difficult.”
GET THE HELL OFF THE MOUNTAIN
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12 May 2015
by Bobbi Carducci
in care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, looping, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, Caregiver Support, Confessions of an Imperfect Caregiver, Dysphagia, elder care, Parkinson's Disease, sandwich generation, sundowning
But if it does, if someone is driving you crazy with advice on how to do this and telling you things you already know and have heard so often you want to scream. If a family member is more concerned about where the money for care is going than how much you are giving up to be there for the one who needs you. If your loved one is failing fast and your heart is broken, know that I understand and I am here for you.
Sometimes there is no peace for us. Only the next moment and worry about what it will bring. For those minutes, hours, days, years, I send you my prayers every night.
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07 May 2015
by Bobbi Carducci
in care giving, caregiver, caregiver anger, Caregiving, family issues, home health care, Lewy Body Dementia, mental illness, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, caregiving, Confessions of an Imperfect Caregiver, elder care, in home caregivier, sundowning
Somewhere a caregiver needs you. They may not say it out loud but they are communicating their need. It could be in their absence from all the activities they used to be involved with or by the phone calls, text messages or tweets that no longer arrive in your inbox. Perhaps the last time you saw her or him in the grocery store there was a brief moment when he or she appeared about to cry.
Maybe you asked what you could do to help and were told everything is okay but, somewhere inside, you knew something was not as it should be.
It’s not that caregivers don’t or want your help, it’s that they don’t know what to ask for.
How do you request a good night’s sleep or a few moments to collect your thoughts? How do you tell friends who are so busy with their own families that you are lonely and wish they would stop by for a visit now and then?
How do ask someone to keep you from falling when every moment of your time is spent holding on for dear life to another?
Somewhere a caregiver is trying hard never having to depend on anyone, to never show any weakness.
If you know a caregiver, please don’t ask if he needs help. Know that he does and do whatever you can to let him know he is not alone.
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06 May 2015
by Bobbi Carducci
in caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues
Tags: Alzheimer's, Bobbi Carducci, caregiver, Caregiver Support, dementia, family stories, health, paranoid schizophrenia, Parkinson's Disease, precious moments, Senior Health, sundowning
It’s your turn again. Please tell me how you are doing. If you’d like to share a bot of your story, please do. It may help another caregiver.
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30 Apr 2015
by Bobbi Carducci
in care giving, caregiver anger, caregiver humor, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, understanding dementia
Tags: Alzheimer's disease, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Lewy Body Dementia, Parkinson's Disease, sandwich generation, Senior Health, sundowning
During the time I was a caregiver and even now, after reading Confessions of an Imperfect Caregiver, people tell me I must be a saint. Always I assure them that I am not now nor I have I ever been saintly. Rodger would have been one of the first to agree with me.
None of us are saints. We are people dealing with dreadful situations brought on by terrible diseases. There is reason to be angry and resentful and less than perfect. There are even more reasons to quit. To walk away and let someone else deal with it. There is only one reason to carry on. Someone we care about needs care. It’s as simple and as complicated as that.
Maybe there is no one else is able to do it. Maybe no one else is willing to do it. The reasons are many. But you are the one doing it and you are the one putting the needs of another before your own. That is not saintliness. There is no expectation of perfection or being prayerful or holy. That is selflessness.
Selflessness is what keeps you going in all your glorious imperfection. Making it up as you go along. Stumbling and picking yourself up as you do the best you can. Reaching out to the person in your care at the start of every new day. Yes, you are the embodiment of selflessness and probably no more a saint than I am and that’s a very good thing.
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23 Apr 2015
by Bobbi Carducci
in care giving, caregiver anger, family issues, sandwich generation, understanding dementia
Tags: Alzheimer's disease, elder care, sundowning
The meltdowns were one of the hardest things I had to deal with as a caregiver. Not his. Mine. The times when I felt drained and had nothing more to give. His resentment, anger, and accusations overwhelmed me.
“She’s no damned good. I know all about women like her,” he told the nurses. “She’s poisoning me,” he said to a sheriff’s deputy one day. “She doesn’t give me any food,” he complained to my husband.
So yes, I had meltdowns. Many of them. And the guilt afterword was overwhelming. How could I behave like that? What was wrong with me?
The answer is, nothing. Just as there is nothing wrong with you when it happens. We all have our limitations and the stress gets to us. Sometimes emotion overcomes us. It’s normal. It’s natural. It will happen. And you will feel the guilt. Let it wash over you and then let it go. You are doing your best and you don’t have to everything right in order to do the right thing.
When things become too hard know that The Imperfect Caregiver understands and is here for you. Contact me anytime.
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04 Feb 2015
by Bobbi Carducci
in care giving, caregiver anger, Dementia, family issues, home health care, mental illness, nursing, schizophrenia, Uncategorized
Tags: Alzheimer's disease, Bobbi Carducci, Book for caregivers, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, Dysphagia, elder care, Family, family stories, family story, harm onself, insanity, Lewy Body Dementia, nursing, Senior Health, sundowning
We thought we knew what to expect. Having an elderly parent living with us would change our life, we knew that. We also knew that Rodger was quirky and had a number of health issues.
“It will be hard but we can do it.” Mike and I agreed. “He will improve in our care.” Boy oh boy were we mistaken.
As his primary caregiver I soon learned that I had a lot to learn and I had better learn it fast. I needed to understand his medications and their possible side effects and interactions. I had to recognize that often he reacted exactly opposite of the norm. If a medication came with a warning that it caused drowsiness he would be up all night. Add a medication to lower his blood pressure and it would soar. It was weird and frightening.
I had to learn that he was often secretive and hid his symptoms when ill or in pain. Over time his illnesses increased in number and severity. What the heck is sundowning and why was he so aggressive in the evening? What happens when mental illness and dementia combine? Would he harm himself? How could I convince the doctor he had Parkinson’s disease when he stopped shaking and sat up straight and told the man I worry too much and not to pay attention to me?
I had to learn how to convince medical personnel to listen to me, not him, when answering questions about his behavior or the newest setback in his ability to remember or reason. He forgot or he lied, it didn’t matter which. The fact is he tried hard to fool them and often succeeded.
“She’s crazy,” he would tell them. Often it was close to the truth.
I didn’t try the same thing over and over expecting a different result as we know is sign of insanity. I became as creative as I could be when problem solving. I was ever vigilant in watching for unexpected symptoms. Still,many times I was close to losing my mind in frustration. When no matter what I did and no matter how hard I tried he kept getting worse I had to learn I could not stop this process. I had to learn that by giving him more good days then he would have had otherwise was the best I could do and that was enough. That’s a test I could not have studied for. I had to live it. I had to learn that he was unique and while many aspects of caregivning are the same, every person is different.
Caregiving is a test we can’t study for. It’s by sharing our stories and our unique ways of problem solving that we learn and I am grateful for each and every one of you who shares a bit of your journey with the rest of us. I’d love to hear from you.
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09 Dec 2014
by Bobbi Carducci
in care giving, caregiver anger, family issues, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Brother Where Art Thou, Caregiver Support, Confessions of an Imperfect Caregiver, help for caregivers, Lewy Body Dementia, paranoid schizophrenia, Parkinson's Disease, respite care, sundowning
Questions Caregivers Would Ask Family Members If They Dared
Why aren’t you here more often? What gives you the right to question and demand answers about how diminished he’s become when you only come by once or twice a year?
Why don’t you call once week or even once a month if you’re concerned?
What? You’re leaving on vacation and will be gone for three weeks? I haven’t had a vacation, or even a day off, in five years. Hell, an hour to myself would be a treat.
How is he? What do you mean, how is he? He’s sick. He has dementia and Parkinson’s disease. He can’t swallow anything but pureed food. He forgets where he is. He forgets who we are. He’s failing fast. You should stop by and see him before you go away. Will you?
You have too much to do to get ready for your trip? You’ll call when you get back? If he needs anything while you’re gone give you want me to a call on your cell phone?”
And if I call what will you do? Will you interrupt your trip? Will you come home early to care for him? We both know the answer to that. You already paid for the hotel. There will be a big fee for changing your airline tickets. It doesn’t make sense to rush back when there is nothing you can do for him.
There’s nothing you can do for him or nothing you choose to do for him? Where are you when he misses you? Where are you when he’s in the hospital again? Where are you when he’s tired of dealing with me and we both need a break?
Where are you when the sun goes down and he gets combative?
Where are you in the middle of the night when he sets off the bed alarm every few minutes from dusk to dawn?
Where are you when the doctor asks is there is anyone else to help care for him because it’s clear the stress is taking a huge toll my health?
Where are you when refuses food and drink? Where are you when he takes his last breath?
Brother Where Art Thou?
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Brother where art thou and where will you be when I can’t do this anymore?
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Panic 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.”
The Imperfect Caregiver 
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