Are You the Black Sheep Sibling? The Unlikely Caregiver?
July 7, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Featured Articles, Grief and Loss
Life is funny. Sometimes the most rebellious of us, the teen gone bad, the unwed mother of three, the Harley brother in leather and bandanas and lots of tattoos who become the best caregiver, the most thoughtful son–or daughter.
Why? Sometimes those who travel counter to society have the most tender souls. Sometimes the battle with their personal demons have made them even more thoughtful, more real and more alive. They may wrap the package in a prickly covering, but that doesn’t mean there’s not a teddy bear underneath.
Our lives are like boomerangs. For some of us, we fling ourselves as long and as hard as we can from our families–and our trajectory runs its course. We go to the bitter edge, turn, and with the same intensity we find our way back home again.
That doesn’t mean that if you’re the black sheep that you have to cut your hair, cover your tats, and clean up your language in order to be a good caregiver. Be yourself! What a refreshing idea. What you have to give to your loved one–your life experience, your way of looking at the world–is unique and of value.
And if you don’t already know it, black sheep have incredible charisma. It’s your charm, your edginess, your dangerous elements that make you such a great care person.
I do think that most of us get more forgiving as we age. We get tired of being angry at everybody and everything. We get tired of our own spiel. We realize we don’t know everything and all that we’ve been hiding and running from was ironically trying to teach us a thing or two. If your family didn’t used to accept you, it doesn’t mean they still won’t. And if your mom or dad or sister or brother need you, and you need them–be willing to knock on the door.
Alzheimer’s and other diseases that ravage our bodies are great levelers. When it hits and your loved one needs help, it won’t matter if you’re wearing cowboy boots or Birkenstocks. Don’t let others keep you away. Don’t let your past keep you away. You deserve to be there. They deserve to have you there in those final years, months, and hours.
So what if you don’t look like, talk like or think like the other sons and daughters in the waiting room. Maybe that’s a good thing. Some of the kindest, most attentive, most present caregivers I know come in the most unlikely of packages.
When Caregiving Takes Its Own Sweet Time, Pace Yourself for the Long Haul
July 1, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Featured Articles, Grief and Loss
I have the privilege of meeting many, many caregivers–and some of them have been at this for a long, long time. Some caregivers are caring for both parents, some a spouse with a chronic disease, others, an adult child who is disabled or challenged. These are the silent heroes. These are the quiet ones who have cared for others for years, even decades. How do they do it?
I’ve had many people say, “I couldn’t do what you did–care for your mom with Alzheimer’s.”
I didn’t know I could do it either. Most f the time, caregiving felt like I was the tin can tied to the back of a fast-moving car. But when I realized I might be doing this awhile, I knew I had to stop being drug behind and began to stand up and formulate a big of a plan.
As caregivers, we can’t always look ahead. We’re too overwhelmed with the here and now.
We can’t know what’s ahead either. Who would sign up for this? You do it because you love someone. You do it because you have a deep conviction that this is right and good. Many times you do it because no one else will.
But if you can take a moment from all the day-to-day responsibilities and take a look at the bigger picture (aka, your life!) Pacing yourself for the long haul is important. Caregiving is much like a marathon–it’s not that impressive to out in the lead at the beginning of the race. That’s easy. You have the energy and the enthusiasm to leap out of the gate. There’s that early exhilaration factor.
A marathon is a test of endurance. So is long-term caregiving. You get “over” trying to impress anybody. There are days you feel on your game–and many days you’d rather not talk about. You go through times of disillusionment, times of resentment, and then the good times roll back around again. You are reaffirmed. You’re needed, and you’re good at what you do. Confidence returns. You circle this mountain many times over.
Pacing Yourself Through Caregiving:
- Get off the drama bus. At first, everything’s a big deal–every ER visit, every “near-death” event. But after awhile you learn that you can’t exert that kind of emotional energy over and over. Learn to reserve yourself a bit–because it’s that reserve tank you’re going to need.
- Be something other than a caregiver. It’s so easy to lose your identity in a role–any role–mother, teacher, but you are so much more than what you do. Keep up something you started long ago–gardening, your membership in the DAR, renew your teacher’s certificate. Have a well-rounded opinion of yourself and realize that you bring all the aspects “you” to your caregiving role.
- Change is the name of the game. It’s easy to get comfortable with our routine, but as monotonous as caregiving looks, it’s not. Change is inevitable, and sadly, when we’re talking about disease and the aging process, our loved one’s health is most likely going to continue to deteriorate. By realizing this, you avoid becoming so rigid that you have a hard time adapting.
Pacing yourself isn’t always easy. It’s not like you can pick your times to take it easy. Sometimes you have to dig deep and exert all you have. And yes, much of your life may feel dictated to you, but the kind of pacing I’m talking about is more about your attitude, your flexibility, your overall perspective of life–you have to decide how you handle the challenges of caregiving–and of life.
In the words of Abraham Lincoln, “Most people are about as happy as they makes up their minds to be.”
Why Does Alzheimer’s Effect People Differently?
June 22, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss
Alzheimer’s does different things to different people.
I’ve heard some people say their spouse or parent got sweeter. “Not my mother,” I say in return, laughing (and almost crying at the same time) at some of the antics my mother and I lived through. My mother had Parkinson’s and later, developed Alzheimer’s. Double whammy. Writing about our daily escapades in Mothering Mother helped me deal with the stress.
Some people with Alzheimer’s are docile, too docile. They stop talking, and pretty much stop moving.
And honestly, as hurtful and difficult as it is to have a feisty Alzheimer’s loved one, my heart breaks for the family members who are left with so little because of this disease. There’s no communication. No love–or fight left in them.
For others, Alzheimer’s turns them into a fidget machine. They pace incessantly, talk, babble, rant, need next to no sleep, and when forced to sit, their knee jiggles non-stop. Others are paranoid and will lash out at anyone who tries to touch them–it’s as if their brain–and body–is on fire.
And yes, for some, Alzheimer’s turns their loved one mean, and violent. They curse when before the disease they were practically saints. They use vile language that would shock and embarrass a fleet of sailors, and their eyes look as if they should already be in San Quentin.
Violence is hard to understand, but for the most part, a person with any brain disorder feels threatened and that’s why they lash out. They may thrash, hit, try to bite if they feel cornered, they may scream at anyone who approaches them or cry as if they’re being tortured.
It’s exhausting, heartbreaking and embarrassing–and yet care homes are full just because of this. Families throw up their hands. They don’t know what to do.
Alzeimer’s effects each brain differently. You have to think of it as a chemical reaction, not a persoanl decision.
The dark truth is that for many, Alzheimer’s turns into an all-out rage. It’s unpredictable and unprovoked. They slap, bite, kick, pinch, and for a few, and surprisingly, they possess the power to break bones, knock someone down, grab knives, throw a lamp, and are truly dangerous.
Their families can’t handle it. Who could? Alzheimer’s patients can go on very little sleep or food. They need 24/7 supervision–and you need to know the staff (weekend, day, and night staff) well.
It’s crucial that you, the family member stays involved. It’s too easy to lose your temper or ignore their incessant cries–and only our love and committment keeps us going. As challenging and scary as it is, visit often and demand good care.
If your loved one is starting to show signs of agression, I urge you to speak to your doctor now.
For some, an added medication that stabalizes their mood (and yes, it may make them lethargic) can curtail their violence. It doesn’t work with everyone, but if you catch it early, it just might work.
Don’t hide behind excuses. When they start gritting their teeth, knocking you away, pulling your hair, you have to get help.
Have you stopped having people over. Do you wear long sleeves to cover bruises? Are you afraid to go to sleep? You’re not alone, but don’t go it alone. Ask for help. There are people and organizations in your community that want to help you–and can help you.
I know you don’t want anyone to “see” your husband, your wife, your mom this way. You want to preserve their dignity. I felt those same feelings. I didn’t want to damage her good name. I didn’t want her to be remembered like this. But know that people are more understanding than you give them credit for–and the ones that don’t understand eventually will. Life has a way of teaching us the lessons we need to learn.
No one knows why Alzheimer’s effects people differently. Yes, it’s brain chemistry. Yes, it’s the way in which each brain deteriorates differently, but it’s also an interaction of personality, history, and family dynamics. We don’t get to choose.
The only way to get through late stage Alzheimer’s is with help. Ask for help. Call your local elder-source office. Call Alzheimer’s Association. Don’t go it alone. You don’t have to.
Celebrating Mother’s Day When Mom’s Gone, Turn Bitter Into Sweet
May 7, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Grief and Loss
Mother’s Day ican be bitter-sweet if your mom’s no longer here.
It’s so hard to say the word, “dead,” and in many ways, our loved ones live on–in thoughts, in stories, in how they continue to impact our lives.
For many, Mother’s Day can be so painful that we do all we can to avoid it. That avoidance is part of grief, and it’s necessary for a while. Grief is like a good soldier, but there comes a time when you say “Thank you, you’ve served me well,” and you let that soldier be released from duty.
After my mother died from Alzheimer’s and Parkinson’s, I felt incredibly lost. I had been her daughter and her caregiver for so long and had invested so much time, energy, and heart into that role. After months, if not years of longing for my freedom, of griping and complaining, all of it felt so trivial in comparison to my mother no longer being in my life.
I knew I had to get my bearings. I asked myself over and over, ”Who am I? What was I doing before caregiving? Do I go back to that–or move onto something else? I’m now the matriarch of the family…does that mean I’m…old?: I’m now the Mama figure, the one everyone turns to, the one who holds the family history.
Feeling lost lasted awhile, but it didn’t last forever. I began to move beyond my grief. I began to grow hungry for life, for a routine, for something to sink my mind into. I returned to college. Someone else telling me what to do seemed to work. I started writing again.
An Excerpt from Mothering Mother:
I put Mother’s wallet and glasses in the top drawer of my dresser today. They’ve been sitting on top of it since she died four months ago. Mother kept Daddy’s wallet, pocketknife, comb, and a small Bible in a heart-shaped cedar box he gave her the second time they went on a date in 1925. Something about these wallets left intact creates a sort of bubble holding time and memory in perfect stillness. Their licenses, credit cards, photos and slips of paper remind me that they had everyday lives.
This makes me question this whole “here, not here” mindset we have. Giving a friend a bit of humorous advice prefaced with “as my Mama always said…” is a way of keeping her here. Will there always be a bitter side of sweet? Will death and dying burn away, so that I don’t have to run straight into them before retrieving a remembrance?
I hear Mother all the time and quote her daily. My friend Debbie’s teenage daughter asked her mother, “Don’t you trust me?” The age-old question every parent is eventually asked, the question we all secretly know the answer to. My southern mother answered that question when I asked it two decades ago, “ Honey, I don’t trust myself in the dark.” Hearing her words echo in my head was somehow comforting.
Perhaps this is your first Mother’s Day without your mom. If it is, be easy on yourself. This can be a tough day. I know I didn’t want a lot of fuss. I needed a hug and a card, and then I needed it to not be Mother’s Day anymore.
But in time, the bitter painful part subsided a bit, and I began to remember the good times, the funny times, the crazy-chaotic mother-daughter moments that made us pair. I could talk about her again. I could tell a story and then smile.
It takes time.
Are You Dreading the Death Date of a Loved One?
April 27, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss
No matter how much you try not to think about it, you dread the day your loved one died. It’s especially hard, those first couple of anniversaries. Perhaps you spent years caregiving and you’re dealing with the void in your life. Perhaps it was sudden and you feel as if the bottom fell out of your life. It feels as if you’re going to get physically ill, dreading this day.
Even years later, a dear friend of mine wonders what’s wrong with her come late May, early June. I remind her that’s when her father died. He commited suicide and took the life of her step mother as well. No wonder everything in her repels this awful day. Who would want to remember? Once I remind her, she can relax. Her anxiety has a reason for being there, and that fact alone is ironically comforting.
My friend has learned to let grief wash over her. Once she recognizes it, she lets it be a part of her again. She knows it will pass, but she also knows that fighting it will only make it worse.
But your body does whether you do or not. Our bodies have “muscle memory.” Just like poison ivy, grief and sorrow gets in your system and comes full circle the time of year your loved one died. You have to give into the grief.
How do you get through that death date?
Everyone has a different way of dealing, so find what works for you. Here are few suggestions to consider.
Instead of avoiding, give in. Have a day to cry, to grieve, to remember your loss. Write your loved one a letter. Write them a angry letter if you need to. Perhaps you’ve put off facing the fact that you are angry and hurt. Maybe not at them, but that they left you with so much to deal with. Maybe you are furious with them, some left over business. So be furious. Write that letter. Stay home that day and yell at them and finally have it out.
Trust your gut. Whatever you need to do, do it.
For others, it’s a bittersweet time. Get out those photos and say goodbye all over again. The day your loved one died or the day of their funeral or memorial service may have been such a shock that you were out of it. You could have been so nervouc, so zoned out, so medicated that you didn’t “feel” your grief the first time around. So do it again. Have you day to say goodbye. Visit the memorial gardens or place you spread their ashes–or create a new place for you to go. Make “right” on saying goodbye to your loved one.
Or maybe you need to avoid. Running feels right, and I won’t tell you not to. Eventually, yes, you’ll have to face all this–but you’ll know when. It may hit you one day and you can no longer avoid upir sorrow. Until then, do what you have to do. Yes, it’s healing to face our grief, but we’re all on different times.
Death dates get easier. Maybe not sequentially–you might have good anniversarie and bad anniversaries. But you will come to a place where you can breathe again.
Does Caregiving Stress Your Marriage? Grow Closer in Your Caregiving Years
April 1, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Featured Articles, Grief and Loss
Is caregiving hard on a marriage? It can be. But it can also be a wake-up call. Sometimes our marriage can be defined by what we’ve survived. Yes, caregiving was stressul on marriage–at times. I wrote in my book, Mothering Mother that I felt like I was a giant ice cream milkshake and each of my family member had a straw–and they were all sucking on that straw trying to get more of me. At times, one would pick up the glass and tap the side, or another would dig deep with the spoon trying to get the last drop.
That’s what it felt like–that I there wasn’t enough of me to go around. Sandwich generation moms really feel this struggle. But looking back, I also see what a rich and textured time it was in my life. Being needed is a good thing. Feeling “cushioned” or sandwiched on both sides can also be comforting and defining.
Did my marriage suffer? Yes, at times. It’s difficult to know how to juggle everything.
My husband got the worst of me. He got the sleep deprived, always griping about something, not very romantic or considerate–me. He knew when I came to bed, I might have to get back up in 30 minutes, and maybe even 3 or 4 times that night. He knew that if my mom had a particularly rough night that he’d “pay” the next night–with a frozen pizza for dinner, or he’d pitch in, do the dishes or take the girls to an activity while I sat zombie-fied on the couch.
But we made it through. He was patient. Understanding. Tolerant. I’m sure at times, I made it harder than I needed to by complaining. We create a lot of our own troubles. He’d hold me in the shower and just let me cry. My mom’s Alzheimer’s was hard–physically and emotionally. He’d wash my hair and towel dry me and I would still be crying. He’d pick my mom up when she fell out of bed or was yelling that someone broke into her room. He was firm when I needed him to be, kind when he needed to be.
Make Caregiving Easier on Your Marriage:
- Be a team. Don’t make each other the enemy. Stay on the same team. Tag team, take turns, help each other out.
- Don’t both of you be down at the same time. It’s pretty natural that if your hubby has a bad day at work, you make him a cool drink, you listen, and you encourage him that tomorrow will be better. If he had a rougher day than you did, then keep your mouth shut and let him vent for a change.
- Not trying to be patronizing to you guys, but my husband doesn’t “need” too much. If I smile when he comes through the door, ask him how his day was–and listen, give him something to eat )–anything, (or ask him to pick it up) and give him some lovin’ once in a while–he’s a happy guy. I’m glad I know how to please him. He knows what I need, too.
- Make time for each other–every day. I don’t care if it’s a walk to the mailbox. Hold hands and take your time. Sit together and have dinner. The wash, the dishes, the baths, the meds can all wait. Even if you have to sit in your mother’s room and eat frozen pot pie off tv trays, being together is what counts.
- Play! Flirt! Chase each other around the house and give each other towel snaps. Turn up the radio and dance in the kitchen. You may not be able to get away–so don’t use that as an excuse. Use that sense of adventure, imagination and humor and sexiness right at home. We used to sneak kisses in the laundry room–and it made me think back to our dating days and trying to grab a kiss without “mama” catching us.
- Keep that love life going. Now, I know, you don’t feel like it. But sex can be like exercise. I rarely “feel” like exercising, but once I get rolling, I’m glad I did. Do it any way. Maybe you can’t muster that 100% of the time, but your spouse needs you–and face it, who else in this whole world will give you what you need if not your spouse?
- If you lose your temper, say you’re sorry. Your nerves are bound to be raw. If you yell, snap, get sarcastic or downright mean–be quick to say sorry–and be quick to forgive.
- If you’re at the end, and your loved one is in hospice care, then know that this won’t last forever. Your life, your routines, your family traditions will all go on hold, and this is going to be hard, but get through the best you can.
- If you lose your way and your relationship feels stretched beyond its limits, or dry as a saltine cracker, trust that you’ll find your way back. Relationships are resilient, and caregiving doesn’t have to break it.
In the end, and caregviving does sadly end, you’ll be able to look at each other and say, “Look what we did.” Loving each other through the storms of life–the sweet times, funny times, and stressful times is really what it’s all about. And if you need help, seek marriage counseling. Hurts, resentments, misunderstandings build up over time–so get them worked out before they fester.
Sometimes you don’t know how good your marriage is, until it’s been tested. Is caregiving hard on your marriage? Sure. But you can stay together and even grow closer by the experience. Iit can also show you just how strong the two of you really are.
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
I’m Not Sure I Want to Attend a Caregiver’s Support Group
February 25, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Uncategorized
I have to admit that I didn’t attend a caregiver support group while I was caring for my mom.
Not everyone is the “group” type.
I started full time caregiving back in 1998 and honestly, I didn’t even know caregiving support groups existed. I had decided that it wasn’t going to be to go and talk about my mother! Yeah, I’m stubborn.
By the time I figured out my way in “caregiving land,” my mom was pretty far along. It’s not that I didn’t need a support group. I’m sure my friends were sick of my griping and whining.
But honestly, what little energy and thought I had were used to continue to parent my children.
In addition to my mom’s meds, physical therapy, and every day needs, I also had to think about SAT prep, teaching my youngest how to drive, helping another study for a big test, making sure they attended a youth group–and my spare time was spent driving them or making sure they got to their activities.
And that’s the way it should be–that’s what it’s like to be a sandwich generation parent. Juggling needs.
But now I know now that it would have benefited me greatly to attend a workshop, conference or support group–at least a couple of times a year.
Caregiver Support Groups Help By:
- Giving you a safe place to vent
- To know you’re not alone
- To find out about your community’s resources
- To make short and long term plans
- Helping you understand what part of the journey you’re on
- To give you validation and permission to feel all that you’re feeling
I encourage you to do a bit of Internet browsing and find out what’s available for you–almost every city and county offers something–an Alzheimer’s Association meeting, an American Heart Association gathering, stroke group meeting or a hospice based workshop.
I also realize I had an aversion to caregiving groups because I didn’t want to face the reality that I was a caregiver. I didn’t want to slap that on a name tag. I was in my late 30s when I crossed that line from being just my mother’s daughter to also being her caregiver.
If You Do Attend a Group or Workshop, Make It Worth Your While:
- Talking to someone while you’re there and even exchanging email addresses or phone numbers
- Ask a question–chances are if you don’t know the answer, others don’t know it either–and would really appreciate your candor
- Get info, lots of info–and follow up, make some calls or check out various groups on the web
- Many home health organizations attend these workshops–you could find some great resources, so look around
- Begin to take pride in your caregiver’s “badge of honor.” Get educated. Help others. Be okay that this is who you are and where you are–for now.
The good news is, you can accomplish a lot of this online. There are chat rooms, forums, and even online workshops–so even if you’re an introvert, you can sit in your PJs and find a caregiving buddy as well as access to lots of resources–all online.
Go on, type in caregiver support group and the name of your city or area. Find out what’s available.
Join an online group, or just call up a good friend–caregiving support has many faces.
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
“Don’t Leave Me Here Without You!” Why Caregiving Your Spouse Is So Difficult
February 4, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss, Uncategorized
For many of us, caregiving a spouse is in our future. We like to not think about it, or at least imagine that it’s a long, long time from now. For many, it’s a daily reality.
Why does caregiving my spouse scare the bejezus out of me and most everybody else?
Because my husband is my strength, my rock, the person I can rail against, nag, complain about–but would never want to do without.
Even when he gets the flu, I’m a wreck. I’m projecting into the future, seeing him years from now, weak, and me trying to care for him.
He’s 9 inches taller than me and about 60 pounds heavier than me, and the few times he’s had minor surgery, I’ve seen how difficult it is.
But that’s not it. We’d find a way to make it work.
It’s not that it’ll be hard, exhausting, or challenging. I cared for my mom through Parkinson’s and Alzheimer’s. I’m no wimp.
Here are some of the reasons I came up with. I’ll vent and you pick the one that best fits you:
(some of them don’t paint me in a good light, but I’m being a guinea pig here so that we can all identify with our less than admirable selves)
I don’t want to become his “”mother.” (By that, I mean I want to remain his wife, lover, and friend).
I don’t want to be stuck by his side 24/7–I’m very independent.
I don’t want him to be weak–for me, or him. He’ll hate that.
If you’re sick, then I have to be well? What if I get sick?
Who am I now? How do I define myself?
I don’t want him to order me around all the time–and he will. I don’t want to fight all the time.
I don’t want to cry all the time either.
I don’t want him saying “thank you” a gazillion times a day and feeling guilty.
I don’t want it to be over.
I don’t want to watch him /her slowly die.
I don’t think I can manage our life/finances/home without him.
I don’t want the fun times to be over–the trips, the banter, the ordinary days.
I don’t want our world to grow small, isolated, and lonely.
I don’t want our world to revolve around doctors and medicine.
I don’t want that time to come when I can’t make him smile.
****
This just starts the list. No one wants any of these things. But until we can admit them, I’m not sure we can move on.
I know that the next step is to take this list and turn it into a WANT list, find the good in whatever life throws me.
I was at a talk for Community Hospice on Saturday at the Mary Singleton Senior Center in Jacksonville, Florida where I told this crazy story about a time when my husband passed out at an amusement park. He said he was dizzy, grabbed his neck and fell stiff as a board onto the gravel road.
I freaked. I thought he died. And you want to know that first fleeting thought?
“You…(I’ll leave out the colorful phrase), you have died–died and left me to raise three kids? Alone?
I then began to pound on his chest (not CPR, even though I was trained) and yell in his face “Help!” What? As if HE could help us? I did it over and over.
Thank goodness, he started to come to, and then I had another thought…”He’s a narcoleptic! He’s going to be conking out all the time!”
I swear, I followed him, walking three feet behind him like some antiquated Japanese woman (did they ever really do that???) for the next two years.
As if I could catch him.
***
That true but embarrassing example is a light-hearted version of what wives and husbands feel everywhere.
Deep inside we’re all screaming, “Don’t leave me here without you!”
Spousal caregiving kicks up a lot of emotions. Some sweet and sentimental, some down right self-serving.
The only thing I can offer is:
- Talk, talk often. Get used to this conversation so that if something awful happens, you’ll have practiced. Kid around, make jokes, talk about the “what ifs.” Nothing is as scary as an unsaid fear.
- Tell your loved ones how you want to be cared for. Please, for your family and spouse, sign a living will. They are so, so easy. Go to The Five Wishes and request one or print one out. Don’t make your family guess and then fight or feel guilty because they didn’t know what you wanted–or they all heard something different.
- Have health insurance, life insurance and long term disability or care insurance. I know the economy is tough, but try to keep these, or seek a governmental equivalent (for health insurance if you qualify). Murphy (as in Murphy’s Law) likes to strike the second you’re unprotected, and caregiving is tough enough without adding the stress of finances.
If You’re Already Caregiving:
- Be present. Each day is precious. Even if it’s hard, chaotic, or near the end, it’s a privilege.
- Keep your blinders on when you need to. There’s a time to think about the future, and a time when this moment, this hour, is all you can deal with. When times get rough, make your life simple, quiet, and don’t go to all those scary places. It’s not the time.
- Never stop being a spouse. I know that caregiving is a lot of “doing.” Meds, baths, physical therapy, doctor appointments, home health aids…after a while you can forget you’re a married couple. Never ever forget that this is the person you said ” I do” with. At times we have to force ourselves to step out of “Nurse Nightingale (or Nurse Ratchett’s) position and step back into that role that no one, no one but you can fulfill. You’re his sweetheart. You’re her sweetheart.
- Give up being perfect. It’s exhausting and impossible. It’s the quirks, the foibles, and the fights that define us. Do the best you can. Forgive yourself when you lose your temper, forget something important, or just can’t do it all. Look yourself in the mirror each night and say out loud, “You did well today. I’m proud of you.”
- Trust that as grueling and dark as it is, you will find the strength, you will find your way through spousal caregiving. Somehow.
***
Caregiving a spouse is so hard. Why? Simple. Because we love them.
At the end of my talk, a very sweet woman purchased my book and asked me to sign it. She could hardly talk, she was crying so. Her husband of 54 years has Alzheimer’s. I held her and cried too.
I try to give tips and I try to encourage, but I can never convey how deeply I care. Your stories touch my heart, and sometimes, all the advice in the world won’t be enough.
Caregiving our spouses may be the hardest, and the sweetest thing we ever have to do.
I’m Carol O’Dell, author of Mothering Mother
Am I Holding Onto the Past? Why We Keep the Clothes of Those We Love
January 13, 2009 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Featured Articles, Grief and Loss, Uncategorized
I’ve had my Daddy’s suede jacket hanging in my closet since 1982, the year he died.
I didn’t know I’d be a keeper, but I guess I am.
It’s brick-red suede, and has completely worn through at the edge of the sleeves. It no longer smells of him, but I keep it.
I remember when I was a child, riding with him to Sears on Saturday morning just to buy salted peanuts and look at the tools in the tool department. He wore that jacket. I was adopted and maybe that makes me more sentimental, I don’t know, but keeping my past is important to me.
I also have his Bible, his wallet, his watch, his glasses, and a yellow shirt I remember him in.
I have lots of items that was my mother’s–her mink coat, her Russian coat, purses, jewelry, a Sunday suit, and more Bibles. (My mother was a preacher, so trust me when I say she had lots of Bibles).
I also have their photos, letters, recipes, Daddy’s old tool chest, the first gift he ever gave her when she was just 14–it’s a small cedar box that’s in the shape of a heart. If my math is right, he gave it to her in 1925. I can tell the story of how they met as if it were my own.
Why do we keep our loved one’s clothes?
Like a child’s ratty blanket, we hold on. Safety, security, identity.
Our momentos are saved in boxes, on shelves, in cabinets, and I know I keep way too much, but how do you let go of such things?
It’s all I have, my way of connecting. I remember Daddy’s bushy eyebrows, the thickness of his fingers and how I could barely squeeze my child fingers through his. I remember that jacket and how he’d wear it when we went to see his family–his sister and brother every Sunday afternoon. His faithfulness amazed me then. His loyalty and tenderness is something I value in a man.
There are issues with keeping things. Psychologists might tell you that you’re not moving on, not making room for the new. I understand the logic. A friend recently visited my home and commented on how much my house had changed in the past couple of years. My mom’s antiques are no longer on display. Some have been give to other family members, others sold. This is a slow process–for me.
It no longer looks like my mother’s house. I moved my mother and her 40 years not moving household items into my house during the last couple years of her life. I tried to talk her into getting rid of a few things but it was hard enough just to get her to consent to come with me.
My house bulged at the seams.
I barely had room for “me.” My mother was one powerful woman. She had a way of taking over. I let her reign, so to speak. As her daughter and in those last few years, caregiver, I learned how to hold my ground and still allow her to feel as if she had some independence.
But now, I have a new couch, a new dining room table. Her furniture has been divvied up among my daughters. I’ve reclaimed my throne, so to speak.
Ironically, I consider myself more of a futurist than a person who lives in the past. I lean toward modern/eclectic design and enjoy new music. I’ve made a slew of six month, one year, five year, and then year plans, always writing my future. I’m a list maker–a list for the day, the week, the month, sometimes two a day. I like feeling like I’ve accomplished something so I’ll write down something down I just thought of so I get the thrill of crossing it out.
But when it comes to my parents, I’m a keeper, but it no longer keeps me in the past. I’m not avoiding “moving on.”
I like to think of their clothes and personal items as a cushion to my life. As if they somehow support me and connect me. Just one look at that jacket and I’m four again. No other Bible comforts me like Daddy’s. I don’t need to even open it to feel a sense of guidance.
It takes time to get to a place to let go of at least a few things.
After your loved one dies, part of grief is when you still try to live in your old life with old clothes and the way things used surrounding you.
You weren’t ready for him to die. You don’t want to date, get a new job, or have to figure out what to do with yourself next Christmas. You don’t want to move on.
Some people get rid of things too soon. Others, too late–it’s different for each person. Finally, you begin to make your own way. Reinvent yourself. Find who you are–now. They are in you, a part of you, but you are changed. You have to go on.
What’s the time frame? Varies. I know people who were clearing out closets before the funeral. I know others who open a closet ten years later–and there’s everything just as it was. Of course, there’s always a chance of getting stuck and not being able to let go. You run that risk.
For many, somewhere around or after that first year mark, things shift–a little. You don’t have to make yourself do everything. Some things come a little easier. A little. For others, it’s two, three years before they can feel anything but blinding loss.
But somewhere along the line, you let go of a few things. You call up a family member and offer them a book or a knick-knack. You sell something, drop items off at Goodwill or another charity. You live with the empty space for awhile before you figure out how to fill your life again. And the items you keep become more intended, more precious. They go in top drawers and the spare dresser in the guest bedroom. You leave out a few photos, a book–a silver comb that sits on your dresser.
Your loved one is now incorporated. Their clothes, their memories are a part of you and they don’t take you or your house over. Grief and memory is no longer like a a giant box you left in the middle of the floor that you trip over again and again.
You still have a few momentos–a jacket, or a Bible.
Anytime you need to, you can slide open a draw and remember.
But now, your closet and your heart is lighter. Airier. There’s room for something new.
~Carol D. O’Dell, Author, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir



