JUST FOR CAREGIVERS

Offering you encouragement as you bear “the burden of the blessing” of caregiving

#22: Kindred spirits. As caregivers, it’s especially nice to connect with others who know what it’s like “in the trenches.” Who but another family caregiver understands the stress, the joy, the burden and the blessing of caring for a loved one?

I’ve heard it said that caregiving is something you never think about until you have to do it. It’s vital that we connect with others who are “thinking about it” like we are. Is there a support group near you? At your church or community center? If you’re not in a support group, call your local Aging and Disability Resource Center, or your county Department of Human Services. They can connect you with a group of kindred spirits in your area. Go. Connect. You won’t regret it!

#21: Just One Thing With so many things on your caregiving to-do list, your days are full. I know. I’ve been there. It’s easy to be so busy taking care of someone else, that you lose yourself. And you’ve heard the “experts” say over and over, “Take care of you!”

You wonder, How can I fit that into my schedule? Who will take care of my loved one while I take care of myself?

Here’s the bigger question: Who will take care of your loved one if you don’t take care of yourself?

Caregiver stress is a huge issue. Only you can do something about it. So today, add just one thing to your list: TIME FOR MYSELF. It may be only five minutes to begin with, but take those five minutes for yourself. Breathe. Eat a snack. Take a short walk. Stretch. Sit and do nothing.

Whatever you need, just do that one thing. Today. For you. You deserve it, Caregiver. You deserve the same TLC you offer every day.

May you be blessed today just as you are a blessing to your loved one.

#20: Holiday Sanity

We have enough to do already, don’t we? Now it’s the holidays and there’s more to add to the list we can hardly keep up with to begin with! What’s a caregiver to do?

Stop. Think. What’s really important? YOUR physical, mental, emotional and spiritual health. (If you’re not fit, how can you help?)

Give yourself the gift of small breaks, daily walks, wonderful foods, time with God…those things that nurture you all-around. Let go of the rest–the expectations, the “to-do” list, the pressures we all feel this time of year. Let your family and friends know that this year you’ll be taking the holidays easy. Then do it.

Give yourself the gift of peace this year, Caregiver. You deserve it!

#19: Strong? No. Willing? Yes.
Someone said to me recently, “A caregiver has to be so strong. I don’t think I could ever do it.” Strong? I don’t have to tell you that most of us caregivers don’t feel strong at all. But maybe you’ve discovered what I discovered, taking care of my mother for almost six years: You don’t have to be strong; you just have to be willing. And if we are willing, then God provides everything we need, day by day, moment by moment.

I certainly feel stronger now than when I started out. But my strength is not my own. The harder things got, the more I was enabled to do what needed to be done.

Strong, no. Willing, yes. That’s all we need. God does the rest.

May you be blessed today, Caregiver, with willingness and strength.

#18: Entrenched

One of the helpers mentioned that she enjoyed coming to our home to help with my mom. “I can tell you’re entrenched. It’s relaxed here.” Yes, indeed. We are entrenched family caregivers, in this for the long haul (over five years so far) and showing up daily to do what needs to be done. Relaxed? I guess we are, compared to where we started. The routine, frantic and frustrating at first, is established and yet flexible enough to change every day.

The days, weeks and years, have brought many changes to our situation, but our mission remains the same as it was on day one: to bless this loved one with loving care, comfort, compassion and companionship, to the best of our ability, today and for as many tomorrows as we are granted.

May you be blessed today, Caregiver, as you do the same.

#17: Take Five Today

Take five today. Take five deep breaths to ease the pressure of caregiving. (Breathing is free.)  Take five minutes to stand outside (no matter how cold it might be) and appreciate the gift of life. (It’s a beautiful world.)

Take five seconds to say “I love you” to somebody–say it to yourself if nobody else is handy. (You ARE loved!)

Take five minutes to think about something fun for you to do and plan to do it. (Plan the what, when, where, how and with whom.)

Take five minutes to close your eyes, in a comfy chair with your feet up. (The world will not come to an end. Trust me on this.) If you can get out, take a five minute walk, turn around and walk five minutes back.

Take a five minutes break from your routine. Call somebody you haven’t talked to in awhile. Write a note of encouragement to somebody else. Eat dessert first.

“Take five today” to take care of yourself. You deserve it, Caregiver. May you be blessed for all you do for others!

#16: A Time to Receive

My mother teaches me today’s lesson (each day seems to have one), as the fourth person of the day troops through her room, her life. The first comes to give her a shower and get her dressed.Numbers two and three are nurses, come to take her vital signs and ask her a raft of personal questions. The fourth a volunteer we’ve never met before, arrives to read her some poetry and sing her some songs. And she accepts them all, taking their comings and goings with patience and grace and good humor.

My mother senses it is her time to receive in life. And there are many of us ready to give her all she needs.

What of us–of you–caregivers? It’s time for us to give, yes, but also there is time for us to receive. We receive, if we’re openhearted, the lessons caregiving offers. And if we’re wise, we’ll realize that one of the lessons is that we can’t do it all. When we recognize that, we’ll be willing to receive respite from our caring tasks, allowing others to share our load.

Decide that you will, for a time this week, allow yourself to be on the receiving end. Ask someone to share your load. Then let them. Allow yourself to “take” a little for a change.

#15 The Unexpected Caregiver

Did you plan on becoming a family caregiver? I sure didn’t. But so many of us find ourselves in this role. Speaker Kari Berit calls us, “Unexpected Family Caregivers.”

I met Kari at a caregiver event awhile back and had the pleasure of hearing her speak. Kari offers up practical advice about aging and caregiving with humor and grace.

And she has resources for the family caregiver, including her book, The Unexpected Caregiver: How Boomers Can Keep Mom & Dad Active, Safe and Independent.
Check  her website for more details.

There is hope and encouragement for all of us, no matter what our  “unexpected” circumstances!

#14: A Cast of Millions

As we walked last weekend in the local Alzheimer’s Memory Walk, I imagined all the people walking in all the cities in all the states. Alzheimer’s and other afflictions affect millions of us. MILLIONS!

Caregiving is a huge thing and year by year, more and more of us are taking on the task. Some say, “How awful.” I say, “Thank God we are not alone!” We have his sustaining grace, comfort and strength–sufficient for every burden we bear. And we have each other–literally a “cast of millions” who care about caring and caregivers.

Let us encourage one another in this journey. And let’s remind one another that self-care –reaching out for support and help–  is a gift we give to ourselves and our loved ones.

As you bless others today with the care you offer, may you be blessed in return with the love,  support and care you need.

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#13: I’d love to, BUT…”

I wasn’t a caregiver for long before I started turning down invitations. I’m sure you understand. It’s just easier to say no than to arrange respite care. My answer became, in essence, “I’d love to, BUT…I’m a caregiver…”

I’m learning to change that thinking. I’m learning to think, and say, “I’m a caregiver and YES, I’ll make a way to do that.”

I’m a caregiver and YES, I deserve time to myself. I’m a caregiver and YES, I need to get away regularly. I’m a caregiver and YES, I take good care of myself as well as my loved one.

Say “YES” to something good today–something that feeds YOUR spirit, improves YOUR health, and makes YOU smile!

#12. Improvisation. I took a class in comedy improvisation recently. It was offered at the local theater on Sunday evenings–a perfect time for my husband to stay home with my mother and allow me a little time away.

I went there to laugh and relieve a little caregiver stress. (Do you have any of that?) But I learned a powerful skill for caregiving!

As caregivers, we think we know what’s on the agenda for the day,  but we have no guarantees. Our plan can be turned upside down by a medical issue, a personal problem, or a last minute emergency.

And we must IMPROVISE. A key in comedy improv is to go with whatever the other people in the skit give you, in the moment. Ah. Sounds like caregiving to me!

Going with what’s happening takes so much less energy than fighting against it.

So for today, I’ll make my plans, but I’ll stay ready to improvise if need be. And if today is anything like yesterday and the day before, improvising will be my most important skill!

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#11. Having Fun. Does this sound familiar? “All my time and energy goes to my loved one’s needs. I’ve got nothing left for myself.” or “I can’t remember the last time I had any fun.”

When my mom moved in with us, my focus shifted–necessarily–toward her needs. As she became less and less able to get out and about, I allowed myself to become housebound with her.

This did neither one of us any good! As a caregiver, I need time away.  I need to relax and have fun–not just so I can be a better caregiver but because human beings need relaxation and fun.

Nowhere is it written that family caregivers must sacrifice 100% of themselves, their needs, their desires to care for their loved one. NOWHERE!

But I know the feelings of guilt and “selfishness”–I’ve felt them. The fact is we have nothing to feel guilty about, and the last thing we are is “selfish”! We need and deserve a regular respite from caregiving!

If you feel like you need somebody to give you permission, here it is: Caregiver, it’s okay for you to take a break, get away and yes, even have FUN!

You can thank me later!

#10. The “Respite Juggle.” Is it just my imagination or do home health workers come and go rather quickly? It seems a wonderful person just gets accustomed to helping my mom and she gets used to them, and they move on to another job or another agency, or another life. I call it “the respite juggle.”

And once again, we find ourselves being “flexible.”  And again. And again. (I get SO TIRED of being flexible! How about you?)

Change–weekly, daily, sometimes hourly–is a fact of our lives. Staying flexible with the changes is a challenge. I am less frustrated by the changes when I remember the “constants”–the love and care my mother has given to me and others over her lifetime, and God’s love and care for us both.

What do you need today to make it easier for you to be flexible? What constant will it help you to focus on today?

#9: Going With The Flow (Again). It happened last Friday. The respite caregiver was due at noon and I had a full afternoon of freedom and errands planned for myself. At 11:30 a.m., just as I was drying my hair and putting on my makeup, the phone rang. My sub couldn’t make it; she was sick. The agency tried to find a last-minute replacement, but to no avail.

I allowed myself a SILENT 30-second hissy fit, and then shifted into plan B. I crossed off all but the essential errands from my list. Then I got my mother ready and took her along on the rest.

Was is an ideal afternoon? Hardly. It’s tough on both of us to be “out and about” when she has trouble getting in and out of the car, in and out of her wheelchair. The stores, the noise, the wide-open spaces can be overwhelming for her, and exhausting for us both.

After the second in-and-out-and-out-and-in “adventure,” she asked if we could please go home. I was all too happy to do just that.

Was it my first choice for my afternoon? No, but we laughed and sang together in the car. And having her along in the stores means I buy less, since everything I buy has to fit into the little basket on her lap.

Flexibility is vital in caregiving–being ready with Plan B when Plan A won’t work. Or maybe Plan C. And at times, yes, maybe even Plan H, I J, or K.

I’m learning to stay flexible. How about you? May you be blessed as you flex this week!

#8: A Lot or a Little. One of the surprise guests at my recent birthday party was also a surprise for my mother. A family friend–we’ve known her for 55 years–came to the party and the two of them spent the better part of the afternoon talking. Afterward, the friend said of my mom, “She connected at times. She remembered a little.”

That’s the best we could expect, that my mother would remember “a little” or that she would connect “at times.”  This is one of the hardest things as a caregiver–to receive what “little” is there as a precious gift and let go of the grief over the “lot” that’s gone.

For today, I will celebrate when my mother remembers a little. I’ll rejoice when we connect. I’ll ask God to help me let go of what will never again be, and give me the strength to move forward. And I’ll pray the same for you.

#7: Changing Times. My mother’s been married three times. In the past, when people acted shocked, “Three husbands?” she’d say, “Well, I didn’t KILL any of them!” Now when I remind her she’s been married three times, SHE’S the one who’s shocked.

The other day she said, “I’ve had three husbands? What was I THINKING?”

Times change. Everyday something changes in the care giving/receiving situation. Memories shift. Stories change. Needs increase.

Flexibility is key, isn’t it? “Going with the flow” is the skill I’m developing. That and taking deep breaths to relax. And that’s all I need for today, for this moment.

Deep breath. Relax. Go with the flow.

#6: Counting the Costs. What price love? What cost caregiving? Caregivers pay a price. We lose time at work. We let career opportunities pass us by. We sacrifice time alone, time with others. We give up travel, hobbies, outside interests. We don’t give everything up–that’s not good for us, we know. But we do give things up. You know that. So do I.

So caregiving has a cost. If we think too much about all we’re sacrificing, all we’ve traded away, we might get depressed. We might start feeling sorry for ourselves.

At least that’s the danger for me. So to avoid that self-pity trap, I focus on the privilege it is to be with my mother at this special time of her life. I think about the joy I have when we laugh together. I think about all she’s given to me in my life; this is just a small paying back of what I’ve received.

It’s all in the attitude, isn’t it? Our distress or our contentment are up to us and depend on where we choose to focus.

Yes, family caregiving costs us plenty. But the blessing of caregiving? Priceless.

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#5. Be Where You Are. My mother asked me again when she could go visit her own mother. My mother is 95 and has dementia. Her mother has been gone over forty years now. My mom said, “My mother’s the best doughnut maker…”

“Uh…soon,” I told her. “You can visit soon.” She smiled, content. I’ve worried that telling these “lies” would be harmful, but then I remembered the sage advice from a friend who works with the local Alzheimer’s Association. “You have to go where they are; they can’t come to where you are.” The moment with my mother was a perfect example. I was here in 2009; she was back 80 years ago, when she was young and her mother was making doughnuts. So I joined her there.

Where are you today, Caregiver? It is just this moment that we have. The past is gone, no matter what our loved one may think. We have no guarantee of tomorrow. We have only this moment.

I make a pledge to myself in this moment. Join me, won’t you? Here it is:

“For this moment, I will take care of myself, remembering that I don’t have all the answers and that I can’t do everything by myself. For this moment, I will be where I am, not mourning the past or worrying about the future, but in the here and now, very much needed and very much loved.”

May you be blessed as you continue to give–to others and to yourself–in this moment and the next.

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#4. How do you spell relief? Is it E-X-E-R-C-I-S-E, or maybe S-U-P-P-O-R-T G-R-O-U-P? I’ve spelled it both ways in the four-plus years I’ve been caring for my mother. Lately I’ve been spelling relief a new way: A-R-T.

I’ve envied those who can draw and paint but until recently, never tried it seriously. (I mean, don’t you need a DEGREE so you can make Art with a capital A?) Then I realized that this is something I could do at home, while my mom is otherwise occupied. No need to find respite care. No need to spend a fortune on materials. (Two key things for the caregiver’s budget!)

I started with some paper and pencils, then added a little paint and a couple of brushes. (www.misterart.com is my source.) I checked the library for books on art making. I started to have fun.

I had no idea when I began how much making art would bless me! It spells “stress relief,” yes, but so much more. The act of creating offers a startling and profound connection–a “oneness”–with the Creator that is infinitely exciting and deeply comforting at the same time. And the respite is so very real; the feelings of daily grieving and loss caregiving offers pale in the bright light of art-making’s celebration of newness and life. How exhilarating to “bring forth something” from nothing!

And I decided it doesn’t matter at all what someone else might think of my “art”! The joy is in the journey. The blessings of the process–stress relief, joy, patience, peace–are all I need.

So how do you spell relief? How can you create something new today?

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“We could certainly slow the aging process down if it had to work its way through Congress.” (Will Rogers)

#3. TLC. One of the hardest things about caregiving is learning to give ourselves the same level of care we give to others. It’s so easy to let our own needs go unmet as we give, give, give to someone else. It’s easy to judge ourselves (Oh that’s selfish! Don’t be such a whiner!) harshly–more harshly than we would ever dream of judging someone else.

I’m learning how to focus on self-care, even as I focus on mother-care. I’m learning to ask myself,”What is it I need?” and then do what I can to meet that need. Last Friday afternoon, at the end of my respite “time out,” I stopped and bought myself flowers. Not just a little bouquet, but a glorious, riotous, humongous bunch of roses and daffodils and others I don’t have names for. Sizes, shapes and colors…all tossed together. I see now the parallel between the arrangement and my life–a sometimes glorious, sometimes riotous and always humongous list of cares and joys, responsibilities and reliefs,  burdens and blessings. And every time I look at the vase on the kitchen table, I smile. I needed flowers in this cold, dark season. I gave myself flowers.

Self-care is one of the least selfish things we can do. We just need to be willing to give ourselves the same level of loving tenderness we extend to others. And in the process, we’ll be blessed!

#2. Easy Does It. “Easy does it” is my motto for the month. So much of the pressure we feel during the holidays is self-imposed. This year I’m lowering my expectations. The holidays will not be perfect. But they will be as joyful as we can manage to make them. I’ll be buying more store-bought treats and serving simpler meals. I’ll be spending less time cleaning and fussing and more time enjoying the blessings of this season. The cozy warmth of candlelight and sharing quiet memories. The way my mother’s eyes still dance when she smiles. The glory of a silent night and fresh snow covering all–reminding me of the real reason we celebrate. Life. Abundant life.

Let there be peace on earth, and in your heart as well.

#1 Gratitude. We approach Thanksgiving–perhaps my mom’s last one. She’ll be 95 this month, and dementia is taking its toll. But I’m so grateful to have her here. Grateful to still be able to see her smile, hear her laugh at the goofy things that happen every day. I know some of you out there don’t have it so good. Some are caring for difficult people. Perhaps illness brought a personality change, or maybe your person was always difficult to deal with.

Take heart today knowing that, hard as it may be, everything you do for the sake of another, every sacrifice you make is valuable. We become better people when we give ourselves for the sake of another. There isn’t any greater love than that.

May you be blessed this Thanksgiving, just as you, day after day after day, bless others!

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Millions of us are out there taking care of loved ones, sacrificing our time, our energy and our lives to give ourselves to others. It’s a difficult, often lonely and often thankless job. And we get up every day to do it. Again. And again.

My Story: My mother is 95 and has lived with us since 2004. She’s still pretty sharp but has short term memory loss (“dementia, possibly Alzheimer’s” the doctor says.) For now, she’s 100% aware “in the moment” of who and where she is and what she’s doing; she just can’t remember that moment in the next moment. I cook her meals, make sure she’s appropriately dressed, take care of her laundry, errands, doctor appointments… well, you get the picture.

Caring for her has changed everything about our lives. I am blessed to have a husband to help me, and siblings and children available at times as well. We also have access to respite services at times (as finances allow). But still, there are days when my sanity is in question. (I’ll bet you understand that too. )

May God bless each one of us during this difficult time and provide the strength, courage and compassion we need.

“There are only four kinds of people in this world:

• Those who have been caregivers
• Those who currently are caregivers
• Those who will be caregivers
• Those who will need caregivers.” (Rosalynn Carter)

RESOURCES FOR CAREGIVERS:

WEBSITE: Tender Loving Elder Care  http://tenderlovingeldercare.com

COMMUNITY: WISCONSIN CAREGIVERS- Check out the website for League of Experience Family Caregivers at UW Milwaukee.

BOOKS: Loving Your Parents When They Can No Longer Love You by Terry Hargrave. (Zondervan) Emphasis on caregiving as a “spiritual journey.” WONDERFUL encouragement!

Caregiving: How to Care for Your Elderly Mother and Stay Sane by E. Jane Mall (also wrote And God Created Wrinkles, which I want to read also )

Caring for Mother: A Daughter’s Long Goodbye by Virginia Stem Owens. Poignant truth and practical insights, beautifully written.

The Emotional Survival Guide for Caregivers by Barry J. Jacobs. Subtitled “Looking After Yourself and Your Family While Helping an Aging Parent” – this book delivers the goods.

The Caregiver’s Manual by Gene B. Williand and Patie Kay. Practical advice, especially the chapter, “When You’re Having a Bad Day.” (Don’t we all?)

If you have other resources, let me know via the “Contact Mary” link and I’ll post them here. Thanks! Together we can do this!