Posts Tagged ‘sandwich generation’
Cindy La Ferle on April 3rd, 2013
Caregivers are forced to let go of a loved one little by little, again and again, sometimes over a span of many years.” — Leeza Gibbons, Take Your Oxygen First
Crafted from fine cotton yarn, the black cardigan sweater became a staple in my spring wardrobe after my mother bought it for me 10 years ago. Rediscovering it in the back of my closet last week, I suddenly recalled a happier memory of Mom – a time when I wasn’t overwhelmed by what social workers describe as “caregiver burnout.”
And then came an unexpected flood of tears.
It’s not like me to fall apart over a sweater while I’m reorganizing my closet. Usually, I welcome the chance to shove my winter-weary woolens back into storage and replace them with the lighter fabrics of spring.
But then again, my mother hasn’t been herself for several seasons, either.
Things began to unravel after my son left for college — just when my husband and I earned the freedom of our newly emptied nest.
First, we noticed Mom was repeating her favorite stories more often than usual. Then her friends would call to report that she’d forgotten to show up for club meetings and lunch dates. She’d drive herself to the ER during her panic attacks, which started occurring with alarming frequency. Not long afterward, her doctors told me to confiscate her car keys.
Mom was 79 and had been widowed for 16 years when she was officially diagnosed with vascular dementia in 2009. She was also battling heart disease and severe hearing loss.
Her only child, I was handed full responsibility of her medical care along with a checklist outlining her worrisome diagnosis.
“Start researching senior housing with memory care – now — so you’ll have choices,” her primary care physician advised. The doctor also asked if I had durable power of attorney (which I did) and reminded me to get all the legal documents in order.
At the time, Mom lived alone in a condo near my house. She refused to consider any type of senior housing, regardless of the fact that she’d been in and out of William Beaumont Hospital half a dozen times, and averaged 45 medical visits annually for countless illnesses, real and imaginary. (I took her to every single one.)
Facing the reality
More than anything, I wish my mother would have helped map the course of her own future. But no matter how tactfully I approached the topic of assisted living — and offered to schedule tours of the best facilities — she’d look at me as if I’d asked her to move to the Outer Hebrides with nothing but a toothbrush.
Regardless, I researched several senior housing options on my own. And just as the doctors had predicted, the decision was made for us — after yet another trip to the ER with Mom in December of 2011.
The research I’d done earlier made our next step a little easier. While my mother recovered from heart surgery at the hospital, my husband and I put a deposit on a studio apartment at an assisted living residence near our home. We moved her there the day she was released from rehab.
By this time, Mom’s dementia had progressed to the point where she couldn’t remember that she’d had surgery and spent weeks in the hospital. I tried to preserve her dignity while sugar-coating the progressive dementia issue. I reminded her that her health and safety were our biggest concerns. Through it all, she insisted she was “perfectly capable” of caring for herself at home.
And how could I blame her for denying reality? Lately, I wish I could rewrite the whole scenario, too.
The grieving process
Saddest of all, dementia robbed Mom’s interest in almost everything she once enjoyed — Early American history, needlework, reading, lunch with friends. And clothes shopping.
In her prime, Mom had elevated bargain shopping to an art form, taking pleasure in scouting for gifts for people she loved. Even when I reached middle age, she’d insist on purchasing a new item of clothing for me whenever the seasons changed.
Which brings me back to the black sweater I mentioned at the start.
Ten years ago, Mom knew I’d been hunting for such a sweater — a classic black cardigan that would bridge the seasons. I’d shopped at several stores in two malls — but with no luck. I’d nearly given up when I discovered a T. J. Maxx shopping bag hanging from the side door of my house one afternoon. In it was the perfect black cotton sweater, which Mom had found on sale at one of her favorite haunts.
When I rediscovered it last month, my unexpected tears released a tsunami of mixed emotions.
Until then, I’d been raging inwardly at the dementia that had devoured my mother’s mind and rendered her incapable of making her own decisions. I hadn’t fully realized that I was grieving the loss of my “real” mother — the woman who had shared her wisdom and recipes, encouraged my career, babysat my son, and took delight in buying me new clothes.
Facing the unfixable
The ongoing nightmare of dementia is hard to explain to others who haven’t walked through this dark tunnel with a parent or a spouse. Whether you’re talking about Alzheimer’s disease or vascular dementia, helping a loved one with a memory loss disorder isn’t the same as nursing a heart condition or a broken limb.
“With memory loss disorders, there is no comfort to be found in hoping for future recovery or improvement,” writes Leeza Gibbons in Take Your Oxygen First, an excellent guide to caring for a loved one with memory loss.
“If we don’t grieve for what we have lost, we can’t experience what we have now,” Gibbons goes on to explain. “In the end, life isn’t about choosing what happens to us; we only get to choose how to respond to it.”
As I write this, Mom is in a nursing rehab facility after fracturing her back at her assisted living residence last month. Her team of physical therapists can’t determine, at this point, if she’ll learn how to walk again. She is twice as fearful and confused. I do my best to remain strong for her, though I’m often exhausted, hopeless, and resentful — and ashamed for feeling that way, too.
In my better moments, I learn everything I can about my mother’s health problems and advocate for her 24/7. I’ve also learned to guard my own health — and my time — knowing that I’m not the only one who depends on both.
Meanwhile, the black sweater serves as an emblem of my mother’s best years; a tangible reminder of her former self. But I doubt that I’ll wear it again. It doesn’t wrap around me as well as it did when Mom first gave it to me — as if to remind me that I’m not the same woman I was 10 years ago. – Cindy La Ferle
For tips on dealing with caregiver stress from the Mayo Clinic, click here.
Cindy La Ferle on October 9th, 2012
Over-giving is often a sign of deprivation — a signal that a need isn’t being met, an emotion isn’t being expressed, or a void isn’t getting filled.” — Cheryl Richardson
I’m finally starting to shake the sense that I’ve been wandering through a dream this season. Managing my mother’s ever-changing healthcare needs — while gearing up for Nate’s late September wedding — felt surreal at times.
If I wasn’t driving Mom to the oral surgeon or the pacemaker clinic (or tracking down a pair of shoes she could wear to the wedding), I was reviewing menus for the rehearsal dinner or writing names on place cards in calligraphy.
Not that I’m complaining. The wedding was absolutely beautiful — and I’m still savoring memories of the highlights, including a dance to a favorite Roxy Music tune with Nate at the reception.
Most important of all, I’ve come to realize that guiding an elderly parent through her final years while helping a son launch a new life of his own are inevitable steps in the ongoing circle-dance of life. Needless to add, I’m blessed to have a freelance schedule that gives me the flexibility to step up when others need me.
But as Cheryl Richardson points out in her newest guide, The Art of Extreme Self-Care, it’s easy to lose oneself in the service of others. If you’re a caretaker, a professional caregiver, a people-pleaser, a mom with kids at home, or anyone else who puts the needs of others first, you know what Richardson is talking about. And I hope you’ll make time to read her book. It’s been a life changer (and a game changer) for me, and I’m very grateful that I stumbled on it while doing some research for a column on “caregiver burnout” earlier this summer.
Richardson used to be a woman who couldn’t say no. To anyone. She taught seminars and workshops, mentored clients, volunteered for organizations, and “supported needy friends who were struggling.” She was often exhausted and had little time left for her marriage. “I was a good girl. I was so used to playing the role of caretaker that it had become a normal way of life,” she writes.
Richardson’s life coach challenged her to make some changes. Encouraging her to “desensitize” her fear of stirring conflict and letting people down, he suggested that she practice “disappointing” someone every day. As soon as I read that, it made my palms sweat. Like Richardson, I’ve often said “yes” when I should have said “no” — even when I knew I didn’t have the time or my heart wasn’t in it. All because I hate to disappoint people.
It’s not easy to break out of this pattern. As Richardson notes, “One of the harsh realities about practicing Extreme Self-Care is that you must learn to manage the anxiety that arises when other people are disappointed, angry, or hurt. And they will be.”
When you stop worrying about what others think, you’re changing the “rules of the game,” she warns. Some of the folks who claim they can always count on you will play the guilt card when you dare to admit that you’re too tired to help, or that you can’t change your schedule to accommodate them.
Yesterday I finally visited Dr. Paul Ehrmann, my family doctor, for a complete physical. After driving my mother to every medical specialist in Oakland County on a monthly basis for the past four years, it felt a little odd to focus on my own healthcare, my own needs. It hit me, while the technician hooked me up for my EKG, that I knew less about the general state of my own health than I do about my mother’s. (I’ll get test results Monday.) And when Dr. Paul began my exam with the words, “Cindy, this time is about you — not about your mom or Nate’s wedding,” I nearly dissolved into tears.
“If you want to live a meaningful life that also makes a difference in the lives of others, you need to make a difference in your own life first,” Richardson reminds us. “When we care for ourselves deeply and deliberately, we naturally begin to care for others — our families, our friends, and the world — in a healthier, more effective way.”
So … what have you done for yourself lately, my friend? — CL
– Top illustration: A detail from “Renaissance Woman,” an altered book by Cindy La Ferle. Bottom photo: Cheryl Richardson (Hay House) –
Cindy La Ferle on January 6th, 2012
Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” — Maya Angelou
Yesterday, while labeling my mother’s clothing and underwear, I had a surreal moment in which I felt as if I were moving another kid to college. In reality, we’re getting ready to transfer Mom to an assisted living residence, where she’ll soon have her own studio apartment.
Doug and I spent the past week moving pieces of Mom’s furniture (her apartment comes with some basics) along with decorative accessories, photos, clothing, TV, microwave, and toiletries. We also shopped for a bedspread and items for her kitchenette.
The new apartment looks traditional and beautiful — the style my mother is accustomed to — yet we know, deep down, that all the elegant things in the world won’t fool my mother into thinking this other place is superior to the condo she’s grown to love so much.
When Doug and I aren’t consumed by the moving process, I’m usually on the phone with a social worker or a physical therapist at the nursing center where my mother is undergoing rehab now. The social worker is concerned about my mother’s delusional behavior this week. Mom doesn’t believe there’s anything wrong with her health — nor does she remember last month’s visit to the ER at Beaumont Hospital, which ultimately led to all of this. Sounding like Dorothy on a broken record, she just keeps asking to go home. To her real home.
While I know this move is inevitable and right, I still feel twinges of guilt for uprooting my mother from everything that matters to her.
And I don’t know how I’d survive the stress without Doug, the world’s absolute-best husband. It breaks my heart a little, too, when I remember that Doug plowed through a similar scenario less than two years ago when his late father (who had Alzheimer’s) had to be moved several times until he and his mother found the right nursing home. (Ain’t midlife grand?) Doug’s experience with lease agreements and medical/legal paperwork alone has been invaluable, not to mention his willingness to sit with me and write my mother’s name on dishtowels and socks with a permanent marker.
The big move from the nursing center to assisted living is scheduled for Sunday. What a long and winding road it’s been. While I’ll be relieved to get my mother in a safe place, finally, I know there’s a boatload of emotional work ahead of me. Mom will need time and patience to adjust. And so will I. -- Cindy La Ferle
– Top: Our family with my mom on Christmas night, at Woodward Hills nursing center cafeteria. My mother has been recovering at Woodward Hills following a week at Beaumont Hospital last month. Bottom photo: A detail from Mom’s new apartment at a local assisted living residence. –
Cindy La Ferle on November 1st, 2010
The art of living lies less in eliminating our troubles than in growing with them. ~Bernard M. Baruch
I won the book this summer, but it sat unread for weeks, buried on my nightstand under a tall stack of novels and review copies. Joy No Matter What: Make Three Simple Choices to Access Your Inner Joy, by Carolyn Hobbs, sounded like a delightful read, but I couldn’t muster the enthusiasm to crack it open.
Overwhelmed with concerns about my widowed mother’s health, I’ve been feeling more anxious than joyful lately.
Mom lives alone in a condo, about 10 minutes from my house. Up until this fall I’ve felt reasonably confident that she was capable of living independently. And she was, for quite a while. But my mother’s early stage dementia — which was officially diagnosed by a neurologist over a year ago — has moved to the middle stage, and her doctors have put me on alert. Right now, I’m filling out the paperwork for an in-depth geriatric evaluation that will, hopefully, lead to the help and advice I need to make the right decisions for my mother. (Including when to take away her car keys.)
Meanwhile, as her sole caregiver, I worry a lot. And as much as I hate to admit it, sometimes I’m swimming against an undercurrent of resentment.
So I happened to thumb through my copy of Joy No Matter What last week, and discovered that “resentment” has its own chapter in the book. And what I read was exactly what I needed to consider.
“Resentment steals joy like nothing else,” writes author Carolyn Hobbs. “It cheats us out of wholesome loving contact with those we love. It destroys perfectly good relationships.” As Hobbs points out, it can also negatively impact our health. Thankfully, she offers some solutions, and one in particular has really helped.
“Writing your resentments down on a piece of paper is a great way to acknowledge them to yourself,” Hobbs advises. “Don’t hold back. The best way to make resentments conscious is to totally indulge them.”
Despite the fact that I’ve been writing personal stories for years, the very thought of recording how I feel about Mom’s dementia — even privately — seemed disloyal and cruel. So I had to force myself to sit down and make a list of all the things I “resented” about her condition and how it has marred our once-happy relationship.
For starters, I admitted that my mother’s dementia has hijacked my peace of mind as well as some of the freedoms of my newly emptied nest. I listed the frightening, paranoid phone calls I get from her several times a week, throwing my normal routine off course. I wrote about how my mother expresses little interest in my life — and how most of our conversations revolve around her health and anxieties. I even tallied all the hours I’ve spent in doctors offices for her countless medical and dental appointments. I wrote about how I resented dementia for blurring the quality of Mom’s elder years, and for building a wall between her and many of her oldest and dearest friends.
Lastly, I listed the guilt I battle daily for harboring all this resentment and worry.
Of course, I will never share this list with my mother. But facing up to my darker emotions has helped me find some relief. Examining the issues that trigger my anger and sadness, I can begin to move ahead and ultimately find the patience required of all care-givers. Most of all, Hobbs’ technique has led me to understand that, deep down, I’m grieving the loss of my real mom. I’m grieving the loss of the mutually supportive relationship we had before the dark brush of dementia rendered her childlike and needy.
Once in a while, I get a few glimpses of my old mom — and I savor them while I can.
Two weeks ago, for instance, Mom phoned to ask about a doctor’s appointment on her calendar. During the conversation, I mentioned that Doug and I were celebrating our 30th wedding anniversary that evening. My mother, who always remembered family birthdays and anniversaries, had totally forgotten this one. “Oh my, I had no idea you’ve been married 30 years!” she shouted into the phone, struggling to process the oversight. But an hour later, she drove over to our house with the most beautiful flower arrangement I’ve seen — a wild assemblage of deep-violet carnations, burgundy roses, and cabbage flowers. The card read, “Happy Anniversary, Love Always, Mom.”
Every day, I remind myself that the overriding emotion I’m really feeling for my mother is love, not resentment. Despite the fact that she can’t recall things I’ve told her the day before, she never forgets that I’m her daughter, and she knows I’ll do my best to get her through this, no matter what. — Cindy La Ferle
– Photo above: My mother on her 80th birthday in September this year. The photo in the foreground is my mother’s high school graduation portrait –
Cindy La Ferle on February 25th, 2010
The turning point in the process of growing up is when you discover the core of strength within you that survives all hurt.” ~Max Lerner
When the walls around my little world seem to be caving in, my first impulse is to isolate myself while I put the bricks back in place. Luckily, I have a great support system to help bolster those walls and to remind me that I’m really not in this thing alone.
Earlier this week, my 80-year-old mother was in the hospital with a broken rib and multiple compression fractures in her spine. Meanwhile, my husband’s own mother has been leaning heavily on him to avert a family crisis of a different kind. There’s been so much going on in our realm of elder care, in fact, that the two of us are operating in what we call “divide and conquer mode.” Yet through it all, Doug always makes time to sit down and listen to my daily litany of “What’s wrong with Mom now.” He’s my main port in the storm.
While my mother wants to remain independent in her own condo, her health issues (including early stage dementia) now require a team of home-care professionals to make that possible. Thank goodness, by the time my mother was discharged from the hospital, her internist had ordered a nurse, an occupational therapist, and a physical therapist to work with her at home several times a week. When the discharge nurse informed me of this development, I fought tears of relief. At first, Mom objected to the idea of having strangers in the house to assist her. But when I explained that I’ll need help in order to help her, she reluctantly backed down.
Of course, this is only a temporary solution. As a retired RN reminded me, determining how to care for our elderly — with love and dignity — is one of the toughest challenges for my generation. Whether you’re an only child like me, or have five handy siblings willing to roll up their sleeves, you need a plan to care for your aging parents. Another friend is wrestling with similar issues for her widowed mom — and she still has teenagers at home. Her brothers live out of state, so, as she put it, she’s been functioning almost as if she were an only child.
Meanwhile, dear ones have warmed my heart and soul with supportive notes and cards and e-mails. Shirley sent three chocolate bars with a sweet note that read, “These will help.” (And yes, they did.) My aunt volunteered to help with Mom’s meals and grocery shopping. And out of the blue, my neighbor Joanne invited me to a spiritual program at the nearby Manresa Jesuit retreat center yesterday. The program focused on the role of the Blessed Mother Mary, and circled around the theme of nurturing and “mothering” ourselves when life seems to ask too much of us. How perfect was that?
When I was preparing for my second hip replacement surgery back in 2002, my friend Jenny sent me a wonderful quote from Patrick Overton. My blog friend Marlynn, who didn’t know that I had already received the quote, sent it to me again last week. (Marlynn reminds me that there are no “coincidences.”) It worked like a charm the second time around, and I’d like to share it with you:
“When you come to the edge of all the light you have and must take a step into the darkness of the unknown, believe that one of two things will happen to you: Either there will be something solid for you to stand on, or, you will be taught how to fly.”
Thanks so much, everyone, for winging it with me. – Cindy La Ferle
– Collage in photo is from “Nature,” an altered book, by Cindy La Ferle –