How to Talk To Your Doctor: Getting What You Want and Need, for Caregivers and Families
March 4, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss, Uncategorized
Most of us pine for the days when we had home town doc who delivered us, knows everything about us–and cared that we stay alive. Not that most ever had that–but it sure sounds good, doesn’t it? As a caregiver to my mom who had Parkinson’s, heart disease, and Alzheimer’s, trust me, I’ve spent a whole lot of time in the doctor’s offices. I’ve gone round and round trying to get them to understand not only what my mom needed, but what I could handle.
I did a little research on-line to find out various ways to find a good doctor, and here’s what I uncovered.
What to look for in a good doctor:
- You can’t beat a recommendation from someone you know–a friend or co-worker.
- Make sure they’re board certified in their field. This is crucial because it can be deceptive.
- Visit the doctor’s office before making your appointment. Look around–is the staff fussy? Do they miserable? Time how long it takes for a perso to be seen. Ask hthe staff how long they’ve worked for the doctor, if they can tell you a little about him or her, or how long the doctor spends with each patient and see how you’re treated. If you hear alarm bells go off in your head, then keep looking.
- Get a doctor you like to recommend a doctor they like (if you’re looking for a specialist or in another field) because good doctors tend to hang out (aka play golf) with other good doctors.
- Check out some online sites that review credentials, awards and distinctions, as well as a rating system for his office and staff. Look at RateMDS.com, Healthgrades.com, ChoiceTrust.com or Vitals.com.
- Remember you’re the client. You’re paying, and you should be treated with respect. Sorry to say, but no doctor is going to spend as much time with you as you probably would like, but they should listen to you, be competent in their assessments, and know their field of medicine well.
- If you do feel that you need to stay with this doctor (perhaps because of location, specialty, or insurance), then here are a few helpful tactics.
Communication Tips for Working Effectively With Your Doctor and Staff:
- Repeat over and over: I am 100% responsible for my life. (And if you’re a caregiver, then you’re also responsible for someone else’s). Don’t leave your medical issues completely in someone else’s hands, even if those hands are attached to a physician. You should know what medications you’re on, what course of treatments you’ve agreed to–at all times.
- Chat with the staff and get to know them. Bribe them with a tin of chocolate popcorn or stop by near a holiday with a coupon to a local restaurant or coffee shop. Hey, it’s hard to resist someone who takes an interest in you, and that’s exactly what you’re doing for them. Ask about the picture of their kids, and use their name when you’re talking with them. This is just being considerate, but it comes in handy when you’ve got an earache and you call begging to be seen that day.
- Start out your relationship with your doctor by shaking hands (dressed), and looking him/her in the eye. Let them know that you’re an equal. You hold a job in your community (or you did if you were retired), and that you are intelligent and articulate. Without being bossy or demanding, let him/her know that you are expecting to be treated in a warm and professional manner.
- Go to the doctor’s office in a good mood! Be a sunshine to others around you. Be on time, don’t gripe about the little things, joke around with the staff–and watch how differently you’re treated. Take your knitting or your favorite magazine and get to know the person you’re sitting next to. Life is happening everywhere–even doctor’s offices.
- Write your questions down and keep them brief–but make sure you go home with answers. Also write down their answers or directions. Don’t expect their directions to make sense–put it in your own words and have a clear plan of action you can follow when you leave the doctor’’s office.
- Do your homework–go on the Internet, check out your condition and possible drugs, treatments, symptoms, and side effects. While some doctors find this annoying or intimidating, others (most) will be less likely to treat you like a two-year old. Don’t act like a know-it-all, but do be informed.
- If you don’t feel you’re being heard, then be clear. Ask a pointed question and make sure you get an answer. You have a right to know what’s going on. Start out asking in a firm and clear manner, but don’t give up. Restate the question and ask again.
- Medicine has sadly become entwined with the pharmaceutical industry and we forget that there are other alternatives and compliments to drug therapy. Let them know what kind of patient you are, and state what types of treatments you’ll consider–or won’t consider.
- Consider holistic medicine as a complement to your main physician. Have you tried accupuncture for aiding in quitting smoking? Or for arthritis? Eastern based practices are now more mainstream than ever, and many of their benefits have been documented.
- Balance your caregiving responsibilities with the rest of your life. As hard as it is, we can’t center our life around one person–as a mother, daughter, wife, and woman I had to constantly weigh what was best with everyone. Some medical advice would keep you in a perpetual state of hospitals, doctor visits, and medical care and leave you no time for anything else. As difficult as it is to face, sometimes you have to say no.
- Write down your prescriptions and dosage and keep it in your wallet at all times. Don’t rely on the doctor or his chart–and realize that if you see more than one doctor and they’re not aware of the other’s medications, you could potentially have some serious drug interactions.
- Speak up if there’s error. It happens all the time. Dosages get written down incorrectly. The doctor orders another round of chemo and you don’t want it–or you can’t take that amount–or your insurance won’t pay for a particular treatment. Don’t get upset, but do speak up–remember that 100% responsible for your own life mantra I mentioned earlier. .”
My last bit of advice: Say thank you when you leave. Shake the doctor’s hands, and even if he or his staff act rushed or inconsiderate, then make it a point to show them how to be considerate. The amazing Maya Angelou said, “We teach people how to treat us.”
Caregivers have the added responsibility for being the health advocate for others. Take the initiative and draw the best out of those around you. Be responsible for yourself and those you care for. Have a goal, cultivate positive attitude and a spirit of gratitude. Generally, we get what we ask for, so be sure to state clearly what you want and need from the medical community.
Author, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
Is This Your Last Christmas Together?
December 23, 2008 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss, Uncategorized
Do you feel this is the last Christmas with your spouse or parent?
Maybe your loved one has just been placed in hospice–or maybe you just know.
You have that feeling.
Perhaps you or your loved one is facing a cancer diagnosis, or you’re at the end stages of Alzheimer’s or heart disease.
This can put a cloud over the festivities. It’s hard to get in the holiday mood while your kitchen counter is filled with medicine bottles–and not gingerbread men.
It gets tirig when you worry about what you say or do being “the last.”
Everything drips with meaning. You’re standing in Wal Mart and feel weepy.
For some of us, it throws us into hyper-drive. We’ve got to create the perfect Christmas. We use that control button in our heads to keep us busy–to keep us from feeling.
Or…you can’t seem to wedge your butt off the couch. Flipping channels has somehow become your life.
You don’t know it, but this is the face of grief.
We start grieving long before death enters the picture. We project ourselves forward and think of the next holiday without them, or we throw ourselves in the past and long for those “golden days.”
The word grief means: Deep mental anguish, as that arising from bereavement.
But that’s dictionary talk. Grief is like a face. While we all (okay, most) have two eyes, a nose, and a mouth, no two faces are the same. Grief is never the same. We wear experience it differently.
So what do you do if you feel like this is your last Christmas together?
Caregivers: There’s Nothing More Important Than a Good Conversation
November 14, 2008 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss, Uncategorized
I love the Japanese concept of Wabi-Sabi–the beauty found in imperfection. There’s nothing more imperfect than family life. The fusses, fights, secrets, and misunderstandings add texture to your life–and salt to your stories.
I found this definition at Nobel Harbor, written by Tadao Ando, a Japanese architect. This essay on Wabi Sabi so touched me that I thought I’d share it–it’s how I strive to live my life.
Pared down to its barest essence, wabi-sabi is the Japanese art of finding beauty in imperfection and profundity in nature, of accepting the natural cycle of growth, decay, and death. It’s simple, slow, and uncluttered-and it reveres authenticity above all. Wabi-sabi is flea markets, not warehouse stores; aged wood, not Pergo; rice paper, not glass. It celebrates cracks and crevices and all the other marks that time, weather, and loving use leave behind. It reminds us that we are all but transient beings on this planet-that our bodies as well as the material world around us are in the process of returning to the dust from which we came. Through wabi-sabi, we learn to embrace liver spots, rust, and frayed edges, and the march of time they represent.
But I do wish I had known back then what I know now.
In regard to caring for my mother, I tell myself I was busy. There was never enough of “me” to go around. I had to eek out my time and love in tiny drops just to give everybody a piece. That was true, and asking a caregiver to stop spinning in a maddening circle is asking them to do the impossible.
The busy-ness (observation–busy-ness and business is not necessarily the same), frantic-ness, never stop breakneck speed is a protective stance.
I had a the privilege of being a real part of my mother’s life the last 15 years she was on earth. Daddy had died, and I was her closest relative. Although I’m adopted, that doesn’t change anything in terms of family dynamics–they were my parents, and I was their daughter. If anything, adoption added a little extra cement to our bond.
I remember a conversation my mother and I had when I was about eleven years old. We were in the car outside of church waiting for Daddy to get out of an elder meeting. Something big was going down–there were rumors that our pastor had had an affair. Even the kids knew about it. I was just old enough to know what that meant–and young enough to think that life was black–or white–nothing in between.
I was in the back seat, mother was in the front, filing her nails, as usual. We both stopped what we were doing and looked at the church.
“Why doesn’t his wife just leave him and the church just fire him.” I said, angry that this pastor I had looked up to had betrayed me as well.
“It’s not that easy, honey.”
That’s all Mother said. I laid my head on the ledge of the front seat, and she continued to look at the building in front of us, at the steeple that strained into a blue sky.
I learned a lot that day–by all that she didn’t say.
I spent hours and hours with my mother–driving her to doctor appointments, to the grocery store, and to the million errands she could concoct just to get out of the house. And in the end, my mother lived with my family and me–she became a part of the O’Dell household complete with two dogs, two cats, three teenagers, my husband and myself. Most of the time she didn’t think about being a part of anything–by then, life, she believed, evolved around her. It was my job to incorporate her, create balance to my home, and not let anyone yell “fire” and hog all the time and attention away from the delicate harmony of our home.
So there I was, always on the go. Always avoiding. Always, even when sitting perfectly still on the outside, whizzing around in my soul like a gyro-top. It was fueled by panic, fear, sorrow, loss, and the underlying thought, “I can’t do this–be responsible for my mother’s life, for my children–I can’t do all this.”
But now I know.
What’s more important than making every doctor’s appointment, than reading about Alzheimer’s, then cutting pill after pill, then the calls to Medicare and home health aides was this:
What my mother (and my husband, children, and friends) needed from me more than anything–was a good conversation.
There isn’t anything in the world as loving and respectful as someone who will sit with you, look you in the eye, listen to what you have to say–and contribute to the conversation. The easy banter of thoughts, hopes, fears, and chit-chat of life is deeply satisfying.
My mother didn’t move into my home just to have a list of needs met every day. Anyone could do that. On some level she was hoping we’d have a few minutes–to simply be. Not to agree with one another, not to be little clones spouting off the same agendas, but to sit as bookends, side-by-side observing life.
That’s what my mother needed. What I needed. I couldn’t do much to speed up or postpone death. We can’t change much about life in the big scheme of things–but what is within our capabilities is how we interact with one another. We can choose to create a time and space for real connection to happen. It can’t be forced or cajoled.
Having one genuine moment of understanding–a said or unsaid conversation is rare and most precious.
We’d have many conversations over the next almost 40 years. Many times we’d talk at each other, alienate each other, blast each other–but every once in a while, there would be that cord that stretched from her to me and back to her again.
There are lots of great sites on the Internet about families, caregiving, Alzheimer’s, elder-care, parents and children–but nothing is more important than quieting your thoughts, unwinding the pent-up soul, and taking a few moments to sit quietly–and talk.I’ll spend the next few posts exploring what makes a good conversation, how to talk to someone we love–someone who is ill or aged, or someone we have issues with–thorns that make us wince at the thought of a meaningful conversation.
I’ll write about how to talk–or be with someone you love who no longer can speak, or comprehend who you are.
I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir–on sale at Amazon, other online e-tailers, and in most bookstores.~Carol O’Dell
“I Don’t Want to Live With my Adult Children!” Our Parent’s Perspective
September 8, 2008 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss, Uncategorized
If you’re a caregiver/son, daughter, please read this post.
You need to put yourself in their shoes.
But I don’t want to live with my adult children!
Me neither.
(And I wrote the book, Mothering Mother–and my mom lived with me the last (almost) three years of her life!) That’s my point–my mother lived on her own–with Parkinson’s and early dementia until she was 89 years old!
We’ll all be in this predicament one day–if we live that long–so we need to be empathetic.
My kids are grown, responsible, and we all love each other–and I still don’t relish the thought of permanently living with them! I am a big proponent of family caregiving–but do it when the time is right.
No one wants to give up their independence.
We like things our way, our household “rules,” TV shows, and favorite laundry detergent. Seemingly insignificant choices give us a sense of autonomy and joy to every day life.
We also don’t want to be a burden. I hear this a lot. I feel it on a personal level, but know that when it’s necessary–cancer, end of life, when it’s really needed, then it’s not a burden. It’s a priveledge–
Ad you still have much to give.
Encouragement, humor, appreciation, family togetherness is a rare and precious gift and should not be under-ppreciated.
I feel priveledged to have children. And I know if/when I have to, we would all do our best to make it work. I’m grateful I have the option if I needed it.
There are many people who do not have children. Or their children are not able or willing to help.
No time for a pity party. Get busy! Use this as a catalyst to get busy doing just that–planning your life–for quality and purpose.
If you don’t want to live in a care facility (prematurely, and hopefully never) or with someone else–family member or not, then I (and you) better have a plan.
Note: Decide today to be okay how your life turns out–either way. Who knows what will happen?
Have you heard of the aging in place movement?
This July AARP released a new report citing that 87% of people with disabilities age 50 and older want to receive long-term care (LTC) services in their own homes.
The National Aging in Place Organization is about collaboration and education to live at home as long as possible.
Aging in Place includes building/altering your home so that you can stay there safely as long as possible.
It might also include a ramp, ample doorways and bathrooms for wheelchair accommodation, safe flooring, and even a space for live-in care. It’s up to each individual to make these arrangements to suit (by anticipating) their needs. This term is also loosely used to help individuals begin to plan for their future in terms of how and where they want to live as life progresses.
Aging in place might even include moving so that you are living in an area where retirement and aging is not only enjoyable, but that you also have ample resources within your community for the care you might need.
Or…it might include living close enough to your adult children so that they can easily check on you and manage your care without having to live with you. ( I know of three families in our neighborhood whose mothers/parents also live in another house in the neighborhood).
Recently, after Tropical Storm Faye, I saw one of the son-in-laws picking up debris out of his mother-in-law’s yard. At least he didn’t have to drive an hour or two to do this little chore–or worry about someone charging her an exorbitant price for a job that took less than an hour.
How to Arrange Your Life So That You Can Live at Home Longer:
(consider one or more of the following suggestions)
- Move your bedroom on the first/main floor
- Do a computer search or call your council on aging and get a list of all your community’s resources now. Don’t wait until you need help to start this process.
- Consider redoing your main bath to accommodate a wheelchair/walker–and make your shower easy to get in and out of
- If your spouse has passed away, consider a roommate. Finish a garage or basement if you’d like it to be more private and separate. This $10-20,000 investment (if it’s done well) could give you added years at home–you could even trade rent for care.
- Be sure that if you choose to do this that you both sign a contract for renting, you get driver’s license info, run a background check and never ever give them access or personal/financial information.
- Even though there are risks involved, having someone live with you or on your property can provide a certain sense of security, companionship, and allow you to stay home much longer than living alone.
- Consider an alarm system if you feel you live in an area where you’re vulnerable to break-ins. Check with your local police to see if this is a common occurance. Elders can be targets for easy crimes.
- Don’t blab to every cable and lawn guy that you live alone. Always act like your son/nephew is in the house, coming home, on the phone. Even if you don’t have one–never let others think you’re always alone. Don’t be an easy target!
- Consider “the button,” a moniteringdeviceyou wear in case you fall. There are systems that will call and check on you morning and night (of course, you pay extra for this), but it might give you and those who love you a peace of mind to know that you can call for help at any time.
- Wear the thing! My mom was terrible about leaving it on a piece of clothing she wasn’t wearing, forgetting where it was–and caregivers, family members–if your loved one has memory loss, this may not help them. They won’t necessarily remember they have “the button” on, or even what it’s for!
- Get rid of clutter now! Clutter can cause you to fall and gets to be a real hassle for those caring for you. Don’t leave this to your family to do later–give those sentimental items to your family members now so that you can see the joy on their face when they use their grandmother’s dishes or wear a family heirloom piece of jewelry
- Gather all your important documents–insurance info, cards, prescriptions, life insurance, house insurance and living will. Place these items in a portable box and let your loved ones know where it is–for easy access.
- Do that living will now–don’t make your loved ones have to guess or fight over whether you’d want to be put on a ventilator or not. Be clear. Make several copies and give them to all the important peopel–one for you, your main doctor, the hospital you’re likely to go to, and one or two loved ones/guardians who would get to you quickly in times of emergency.
- Get a recliner chair that can lift you out easily (consider this your next purchase when the current chair needs to be replaced)
- Eventually consider a bed that is motorized–this added expense really helps if you have back problems and can sometimes be covered on insurance
- Place tread on any slick floors inside or outside your house to avoid slipping
- Remove any throw rugs that might trip you–(you may need to do this later or if you tend to shuffle)
- Begin to think about your options if/when you can no longer drive–is there a senior van in your area? Friends/neighbors who you can ride with or will pick up a few items for you? Even consider a taxi–most areas have taxis (even if you’ve never used one in your area before, they’re probably there). Don’t sit at home and waste away–even if your eyes or your coordination begin to wane, you can still get out and enjoy life.
- Continue to be a part of your local church/temple. Make friends–you need them, and they need you! Churches and community organizations are there to help. Let them. Helping others make us feel good–don’t be so stubborn and independent that you don’t allow someone else to give and feel good. If someone is willing to pick you up to take you to Sunday School or choir practice–let them~ You still get to go to an activity (which is good for you), and they feel like they’ve helped someone. Win-win.
- Get to know your neighbors. You can all keep an eye on each other. Be nice to the kids in your neighborhood–they can rake your leaves or bring you the mail. Most children and even teens long for a grandparent and don’t get to see theirs enough. Wave! Smile, get to know their moms and dads so they trust you. Bake a cake and take it to them. Cultivate relationships. Old-fashioned neighborliness and friendship never grows old and is never out of style.
- Choose where you want to pass away. Hospice offers you the choice to spend your last few months/weeks/days at home and can offer palliative care (pain management). Most people choose to be in their own home and to surrounded by those they love.
- Hospice means that you have a life-limiting condition with a diagnosis or a year or less to live. Don’t wait until the last minute–ask for hospice. Anyone can refer you to hospice (including yourself or your physician). Also know that many cities have more than one hospice with varying levels of care and options. Check them out to see what’s available to you.
Bottom line:
Plan now. If you’re over 50, then you better start planning. Having a 401K isn’t enough. It doesn’t take care of the details and quality of life–and money won’t fix everything.
Adapt your house to suit your aging needs.
If it’s not too late, and you need to, move closer to family so that it’s not hard for them to drop by and check on you.
And…or…live in a community that is “elder friendly,” with lots of resources.
Stay involved with people. Accept their help. Give back any way you can. A smile, a hug, homemade cookies will get you lots of friends. Neighbors are important. Do more than wave. You might need them one day.
Stay/get involved in church and other community activities. The more plugged in you are, the more people you have in your life, the more your mind/body stays active. Staying active will keep you at home.
No longer driving is not the end of the world. Figure out how to make it work–taxi, community van, church members/neighbors.
Consider a roommate or a family member living arrangement. Just be safe, sign a contract, and do a background check. ( I know of several nieces/nephews who are young and starting out in life by sharing a house with an aunt or grandmother).
Get help when you need it–hiring day-time care is cheaper than a care facility. There are many great companies such as Comfort Keepers who are licensed, bonded, flexible and reasonable–usually less than $20.00 an hour.
Keep a positive outlook on life!
Smile, see the good, and find ways to give and receive love.
Carol D. O’Dell, and I’m a family advisor on Caring.com.
Check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon, other online stores and in bookstores. Kunati Publishing
My syndicated blog appears on www.opentohope/caregivers.com