We're not alone. The child becomes the parent. And it's you. Me. Us.
The caregiver knows all about the trips to the doctor, the rehab, the hospital. The tension with faraway siblings who have a lot to say, if not to do - or their silence. The forgotten memories and repeated questions. The awkward bathing and diapers. The 2 a.m. phone calls.
And the love, the laughter, and knowing you'd rather be here than anywhere. The friends and neighbors who help you keep them at home, and safe, with you. Or, sometimes, in accepting your limits, and knowing what's best for them, and for you, making the choice for assisted living or full-time nursing care.
Last month we invited caregivers to share thoughts and ideas following an article by John Kaiser. He has spent many months a thousand miles away from his own young family to support his parents, Frank and Carolyn Kaiser, whom longtime readers know from his dad's column in LifeTimes.
We received a number of interesting stories, and I want to thank all of you who wrote in for opening your hearts to us to share with our readers.
Here's one perspective, from Alena Watts of Clearwater, that explains our journey.
"Being a new caregiver is like giving the keys to your car to a 16-year-old kid who has had no driver's education, no experience, and then sent on a road trip. You pray for the best. Yes, it is scary and there are lots of bumps in the road but you keep on trucking."
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Her mother's daughter
I have cared for my precious mother full time for 11 years. When I moved in with her, I got her an automatic pill dispenser with an alarm. I also kept a personal medical journal with all her medications, test results and a living will in the journal, too. This really helped the ER and doctors when we needed to go to the hospital.
We watched movies, ate buttered popcorn and shopped on television. It's important that one's family member still feels needed. Some days she had trouble walking, so I would put her in charge of answering the phone, shredding papers or just brushing our family pug, Frank. I lost Mom on March 25, and I also lost a part of myself. The void is indescribable. Life goes back to normal, whatever normal is for a caregiver.
Donna Dausch-Morin, 49, Brooksville
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Care for the caregiver
The best advice I can give is not to the caregiver but to the other family members. Call, visit, send money so the caregiver isn't always using their own food money to buy clothes for your parents. Or bring dinner in as a surprise for them once in a while. Don't forget to send birthday cards and gifts on the holidays.
Think how you would feel if your children ignored you. Children do as they see you do. How will they treat you down the road? Probably the way you treat your parents.
Ann Salustri, 65, Clearwater
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Be honest with yourself
Set your limits. As much as I dearly loved my mother, she didn't live with us full time. It also means that I don't do anything I don't want to do; the cost of an occasional maid or companion is well worth my sanity and makes me a more willing and loving helper.
Take time for yourself. I set aside one day a week that was "my" day and learned to say no when we were scheduling appointments. Yoga classes help me stay focused and balanced physically and mentally. If you don't take care of yourself, you won't be able to take care of someone else in a loving manner.
Elizabeth Morse, 59, St. Petersburg
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The big picture
Let the small things go and set your goals daily. Does it really matter what clothes are worn over and over? They're clean. Does it really matter that the conversation is about the same thing every day, several times a day? Listen. Enjoy that same conversation. Every day I knew my mother was loved, safe and with her family, and happy to be with me.
Pam Tiedeman, 59, Palm Harbor
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That's what friends are for
Ask for help. It is not a sign of weakness and you are not putting your responsibilities on someone else.
Friends told me afterward that they wanted to help but every time they tried to offer, I put up a barrier. So they would back off not to offend. How did I miss that? (I must have been too busy stewing over the fact I was all alone.)
Carole Ware-McKenzie, 47, Largo
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What's next? We'll see
Caregiving advice? Patience! And a sense of humor is a very close second. Take it one day at a time - and always expect the unexpected. We just wake up each day and hope nothing bad happens. We have caller ID in the bedroom and I peek every so often when I wake up during the night. No blinking is good.
Karen Russo, 50, Pinellas Park
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Appreciation and opportunities
Make the most out of medical appointments by documenting observations and questions since the last visit. Remember to acknowledge and thank the medical staff who are helping your family.
Share experiences with your family member, have conversations and questions answered about the old days, hear stories told and retold, share laughs.
Patty Everett McMaster, 54, St. Petersburg, and Diane Everett Murphy, 51, St. Petersburg
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I have been taking care of my husband for 11 years. When a medical crisis arises, I use e-mail (and even Facebook) to reach out to our extended family and our closest friends who are spread out across the country. I say what needs to be said one time in detail and everybody gets the same message. Some don't like it and want special treatment. I understand, but I have to do what is right for me or else I won't get through this. I plan to be a survivor. Jokingly I tell them I've earned my right to have a nervous breakdown but that I don't have the time right now.
Sharon L. Beckwith, 69, Hernando
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Hospice was wonderful
The worst decision I ever made was keeping someone so sick at home instead of asking for help until near the end. It about killed me. Have your parents in a nice assisted living facility nearest to your home. They will be better cared for, safer and you can still have a life and spend better quality time with them.
Hospice came the last week of my mother's life. I would strongly advise you to sit down with one of their personnel. They are an outstanding group.
Sandra O. Dobson, 63, Spring Hill
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My husband, at 86, developed full-blown dementia. Because he was a veteran, many expenses were covered, but there were costs, including paying for in-home nursing assistants who worked every day from 8 a.m. to 6 p.m. I took over at night.
I watched Netflix movies and read lots of books like A Place Called Canterbury: Tales of New Old Age in America by Dudley Clendinen and The 36-Hour Day, a Family Guide to Caring for Persons with Alzheimer Disease and Related Dementing Illnesses by Nancy L. Mace, M.A., and Peter Rabins, M.D.
Frances Kogen, 83, Miami
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Saying goodbye to home
For some folks there comes a time - "the elephant in the room" - when decisions for assisted living or nursing care must be made. The adult children who take care of their parents also need to give time and care to their young families, especially when they are far away. Assisted living facilities with adjacent nursing homes are big business these days. There are good ones out there.
Susanne W. Cottrell, 79, Ocala
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Indeed, many share the challenges
After a lot of soul-searching, I moved my parents (struggling with dementia and Parkinson's) and my aunt to Tampa to a continuing-care facility near my home. I hired a caregiver to help with doctors' appointments, haircuts and just to be an extra pair of eyes.
The hardest thing for me? I kept trying to impose my wants, but what I thought was important to their quality of life was no longer relevant to them. In the end, my goal was to make sure they were cared for, comfortable and clean.
Both my parents have passed on and my aunt is now living on the floor for residents with dementia.
I know I am not alone. Lots of my friends have or are facing this challenge. I hope everyone finds peace.
Kathy Edwards, 64, Tampa
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Planning and sense
Sign up with social networking sites for caregivers. You will learn about resources, other support options and on your worst days, you'll feel like you don't have it so bad.
Talk to an elder-care attorney. There may be options for assistance you are not aware of. They are not cheap but may prove well worth it.
Find a good doctor who specializes in geriatrics.
Get papers in order now in case things physically or mentally change with your parents - or with you and your spouse - including power of attorney, the living will, health care surrogate, etc.
Alena Watts, 44, Clearwater
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As tough as it is on caregivers, try to put yourself in the shoes of the person you are caring for. My father who was once a very independent person is now dependent on others. Mentally, that is tougher for him than his physical limitations.
Jim Dutzar, 43, Tampa
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I care full time for my 90-year-old mom. She moved in with me a year and a half ago. There is one thing that I found that I had never heard of before that has really helped me: laughter yoga at the community center. It's not yoga in the traditional sense of physical poses. There are fun things we do to encourage laughter, whether it's real or "fake." Eventually even fake laughter becomes the real thing. After a few weeks I noticed dramatic changes in my mood. I hear myself having the spontaneous laughter I used to have as a youngster. Even though my mom does not attend, my better mood has influenced her. Now, when a disagreement pops up I just laugh and she can't help but laugh herself. Sometimes we just get in fits of giggles. How nice is that?
Elizabeth Faubert, 49, Dunedin
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A family affair
After a diagnosis of Stage 4 lung cancer, my 77-year-old mom only asked for one thing: She didn't want to be left alone anymore. So from that day her support system of five children and two sisters started taking turns staying with my mom. I was flying back from Tampa and two of my other siblings were traveling long distances from other states to take their turns. Everything was logged on a daily diary we kept, from medication changes to new problems the next caregiver should expect, even what she liked to eat. Nobody can take care of your family better than family. We were with my mom around the clock until she decided it was time for her to go to the hospice center.
Tom Conley, 55, Safety Harbor
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If someone told me 10 years ago that I would revisit the art of changing diapers, feeding, giving a bath and putting to bed, I would have told them they weren't playing with a full deck, yet as fate would have it, I would soon learn what it was to be a caretaker again, this time for my mother.
One can moan and groan about retirement plans interrupted, but the only healthy way to really look at it is to remember who it was that changed my diapers, fed me, gave me a bath, put me to bed and showered me with TLC when I was helpless and needed someone to care for my needs.
Len Vivolo, 66, and Mickey Vivolo, 65, Palm Harbor
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When push comes to shove
Enlist your families' help, both your immediate and your extended families. Children can learn much by helping loved ones who need it. Trust me, the family members who do nothing will be the first ones at the door when it comes time to split up the assets, so don't be shy about asking for help. I hope that you do not have any power struggles with siblings or other relatives, but it happens. If you have the legal status among the group, you can still ask them to be part of the decisionmaking process, although in some cases, family dynamics make it impossible.
Cathy Kallin, 61, Seminole
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Keeping a positive outlook
I just can't say enough about being positive about all the care you give someone. If you keep them happy no matter how hard it is, they will cooperate with you, appreciate you and get well sooner, and feel better while the process moves ahead. Caregiving is a challenging job and I've found the hard part is changing the negative attitudes most people have to positive. . . . For a caregiver to do a good job they need to be in good shape. They have to be patient on top of everything else, and I've always had a lot of that, luckily. They need to have creative thinking - think outside the box for answers.
Lon Fry, 70, Palm Harbor
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I am one of three nieces looking after the well-being of our 99-year-old aunt who has not had any children of her own. Two of us are in Florida and my aunt and cousin live in Pittsburgh. Therefore, the day-to-day burden has fallen on our cousin.
But about two years ago, we accepted that the stress both physically and emotionally on my cousin required more aggressive action. Many people, especially the elderly, do not want to leave their homes or their hometowns. This is where the caregivers must be firm. Refusal to relocate should not be an option when the individual is no longer able to be independent.
Phyllis Miles, 64, Lutz
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What does it take?
- It takes spouses who realize that chores and other responsibilities around the home are going to have to take a backseat to the care of my mom.
- It takes employers who understand that "you only get one chance to do this right," and they work with you to afford the vacation or leave time required.
- It takes close friends to be there for advice and encouragement.
Tom Conley, 55, Safety Harbor
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Love and laughter sustains us
My father called, asking for me to come to Florida from Ohio, to help with my mother, who was in the hospital. I arrived the next day, and after two weeks, a decision had to be made: move back to Ohio, or stay in Florida. I have been here for four years. I did not think I would be the one in our family for the job, but being single, and an artist, I could work anywhere, so it made sense. My father, who became much more relaxed and happy when I arrived, died within a year. My mother lived for another six months.
Remember that your parents are set in their ways. If it is not going to hurt anything, let them go ahead and do it their way.
Go places. We would go out to dinner every night. Being around other people helped both of us. I set up a weekly hairdressing appointment and she had her nails done as well as a pedicure. I showed a picture to the hairdresser of when my mom's hair was blond and the hairdresser took her back to that color, to that time in her life. My mom felt special, she knew she looked good.
I always took her to some friends' house for appetizers and a gin and tonic. Because of medication, we left out the gin, just rubbing a little around the glass, but it was enough for her to enjoy her drink.
Laugh, joke, think about things she did for you as a child, her sayings: "Good night, don't let the bedbugs bite!" She always laughed when I said that to her before she would go to bed.
Tape your mouth shut when around your brothers and sisters. Count to 10 and wait 24 hours. They mean well. Always say "I love you" to your whole family. This is a major change in your life - you will need them later.
And if you know a caregiver, offer your help. Maybe once a week see if you can sit while they go out to a movie or dinner. Insist. If they get stubborn and say no, take over a dinner, even fast food, and have a little party.
Richard Seidel, 61, Clearwater Beach
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A place in your heart - and your home
I began caregiving about 16 years ago with my father, who had Alzheimer's. After he passed away, my mother moved to the east coast and I drove weekly to see her as she was showing signs of Alzheimer's. We moved her back to Tampa, purchased property in Land O'Lakes and built a home with a separate mother-in-law suite. Little did I know that caregiving would turn into a full-time job, 24/7.
Although she keeps deteriorating, her physical health is exceptional. At 89, she takes only two prescription medications.
I turn 60 this year, which is around the time of onset of my father's Alzheimer's. I have the resolve to continue to take care of my mother and I hope that I can stay mentally healthy to do so.
I am so grateful that I've had the support of an understanding wife.
Richard Burgess, 59, Land O'Lakes
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Necessity is the daughter of invention
I am blessed because I am a stay-at-home caregiver. I don't know how someone with a job and family manages. Mother and I moved into a two-bedroom townhouse. I set up my own complete living room in the master bedroom upstairs, giving me the ability to "go home." This has helped to keep the stress level down for both of us. I also converted the dining room into her bedroom so Mom, 87, has her own little home downstairs with her living room and bedroom.
This created some serious safety issues. So I put in a baby monitor. I also got some inexpensive portable doorbell chimes with multiple buttons and put a button in her bathroom downstairs, at her bedside, on the table beside her recliner, in the kitchen, and I also attached one to her walker. She can get my attention no matter where she is - even if I am napping. I also purchased a pair of walkie-talkies and I can answer her rather than needing to go downstairs - I make enough trips up and down the stairs already; any step saved is a blessing.
Jannis Lynne, St. Petersburg
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Love bound by three generations
I cared for my mother, who died of cancer in November. She lived with us - my husband and boys now ages 8 and 11.
There are so many facets to caregiving: love, support, feedings, medications, dealing with doctors and surgeries, hospitals, other family members, fears, decisions - and at the same time being there for the rest of my family.
My mother had a controversial 12-hour surgery for oral cancer that took her tongue, jaw and ability to swallow. It was unlike the other surgeries, when I had been able to bring her home and care for her. So every day I got up and got my family ready, then made the trip to Tampa for a day of dealing with doctors and nurses and procedures.
She was my best friend, and as hard as it was for me, and as disfiguring to her, we had always been together and this came naturally to me.
When she could no longer speak she wrote volumes of notes to me, which now will remind me forever of our journey.
Connie DeVoe, 41, Clearwater
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'Senior Living Guide'
This magazine and online site are an extensive resource for folks in need of in-home care or alternative housing options. Included are detailed lists of retirement communities, assisted living facilities, home health companies and skilled nursing/rehab options. Narrow searches by area, care options, payment forms and availability. Online: seniorlivingguideonline.com. The latest magazine edition is at CVS pharmacies, select Publix, Sweetbay, Winn-Dixie grocery stores, as well as doctors' offices, hospitals, medical offices and retirement centers. Or to receive a copy, call (727) 553-5100.
The New Age of Caregiving Symposium is 8 a.m. to 4:30 p.m. Sept. 23 at Ruth Eckerd Hall in Clearwater, $35-$55. A day of information and rejuvenation. Keynote speaker is Gail Sheehy, author of Passages of Caregiving. (727) 798-2663; newageofcaregivingsymposium.com.
On the radio
The Caregiver Hour, 11 a.m. to noon Mondays on WHNZ-AM 1250. You can also listen online and as a podcast atthecaregiverhour.com.
- Life @ the End: Caring in the Face of Loss, film documentary, 10 p.m. today, WUSF-Ch. 16; and 9:30 p.m. Thursday, WEDU-Ch. 3; healthystate.org.
- "Caring for the Caregiver" class, 3-4 p.m., Tuesday, free. Emeritus at Carrollwood, 13550 S Village Drive, Tampa; (813) 908-5300.
Area Agency on Aging of Pasco-Pinellas:agingcarefl.org
West Central Florida Area Agency on Aging:agingflorida.com
Florida Department of Elder Affairs:elderaffairs.state.fl.us
Florida Agency for Health Care Administration (Medicaid program):ahca.myflorida.com