CAREGIVING CAN KILL YOU … but it doesn’t have to

Caregiver: A person who provides direct care (as for children, elderly people, or the chronically ill) Merriam Webster,com

The women in my family have always been caregivers.  It’s  what we do –   We care  for our parents,  our children,  and if we outlive them,  as we usually do,  our spouse.   Then the cycle repeats and someone  cares for us.  At least that’s the plan.   I grew up with it, I’ve always understood it. I had been there with my mother, but caring for a spouse would be harder, a lot harder.  I dreaded the prospect.

But as I had feared, slowly, steadily, it began to happen. Little losses at first– not losses really; more like changes that chipped away a little freedom. A fall that triggered the use of a cane, hearing loss that required hearing aids. Onset of macular degeneration which necessitated painful eye injections.   And with each small loss of his freedom, without noticing it, I sacrificed a little of mine.

Over time, bit by bit,  caring for my husband became my life. Instead of the things I had looked forward to in retirement; working on my book. joining a music group, quilting, or simply relaxing with a book, I was becoming an expert on all things caregiving.  I had lost touch with my old life; my closest friends were now other caregivers. 

Confined to a wheelchair with failing vision, he had to be driven to every appointment, every meeting. Although I was fortunate enough to be able to afford care (and it did help), it was far from the solution. Some of the caregivers were great. But many were unreliable. Call-outs and no-shows were frequent and re-training exhausting.

I was struggling under the load and resenting every step. But despite this, it was very, very important to me to “get it right”  By some twisted logic, I had convinced myself that by being the perfect caregiver, I could somehow stall my husband’s decline or at least soften the fall. I renovated bathrooms, widened doorways,   installed handholds and ramps, re-purposed the dining room into a TV room with luxurious lift chairs, a big screen smart TV and special lighting,   Removed rugs and replaced carpets with hardwood floors.  The list goes on and on.   Our home was a showcase of tasteful accessibility. 

But I didn’t stop there..food also had to be perfect.  I spent hours planning weekly menus to stimulate appetite while accommodating  his dietary restrictions.   Since TV was his primary entertainment and his vision prevented him from finding his own shows, they had to be programmed hourly. The list goes on… All while attempting to maintain the family finances and maintenance of our home and lake house.

For a  surprisingly long time- a few years in fact, this rickety scaffolding appeared to be holding   Friends and family (but not my doctor!) were impressed with how well I was “coping”  and I admit I agreed!  I was not only doing well, I was getting this right! I was just fine. And I didn’t need any help!

Until I was forced to confront a very uncomfortable truth. 

Caregiving can kill you.

But it doesn’t have to.

In the spring of 2023, while briefly  hospitalized,  my husband contracted a cold which (no surprise) he passed to me.  His lasted a week, mine progressed quickly  into severe bronchitis and lasted for three months.  My doctor quarantined me in the spare bedroom, prescribed nebulizers, antivirals, inhalers  and most of all,  bed rest.  Shockingly, ironically! while becoming a model caregiver for my husband, I had so ignored my own basic needs that I ended up seriously ill and unable to care for him at all.

 Forced to face reality,  I finally accepted that I could not delay, soften, or control in any way, my husband’s decline, but I could certainly hasten mine.   I finally heard what my friends, my doctor, my caregiver books, had been trying to tell me:  I couldn’t take care of anyone in a mentally, physically and spiritually bankrupt state.  Things were going to have to change.

And help had always been there – friends, family, support groups, respite care – I just had to ask, be willing to keep asking until I found it and accept it.

It is almost a year later, and I’m relieved to say that things are better. After my health scare, I made a commitment to myself to take time away when I feel my resources draining. And most of the time, I have kept my commitment. But this hasn’t and still isn’t.easy. At first, lunch with a friend left me anxious and guilt-ridden and it took months for me to commit to a weekend away. Guilt is my go-to. It has always been hard  for me to be OK when others, especially those I love, are not. It felt wrong to prioritize my own needs; to take a break when others didn’t agree or understand why I needed one, or worse, take it personally. I had taught others and especially my husband, to rely on me, to expect me to be always there, and when I wasn’t, of course he felt rejected and angry. It was, and sometimes still is, hard to experience his anger and disappointment, to resist the temptation to return to the old familiar pattern of being “the dependable one” always there for everyone except myself.

Caregiving is hard. It iis heartbreaking to watch someone you love suffer, to know they will get worse, not better, that you can’t stop it and that there is timeline, no end in sight. If you are the spouse, household, family, financial, duties once shared, now fall on your shoulders. You are on constant high alert, 24/7, 365, knowing that a life and death decisions could need to be made at any time. While there are many resources a wealth of information out there, there is no handbook, no manual.. Every case is different. No wonder many caregivers pre-decease the person they are caring for.

According to a report in the Journal of the American Medical Association, family caregivers are 63% more likely to die within 4 years than their non-caregiver peers.. 1 And a national survey recently revealed that 57% of caregivers use some sort of substance abuse to cope with their anxiety and depression; 14% report using alcohol to cope, 18% medication and another 50% food.2

In spite of all this, there are very real joys to caregiving. Having the complete trust of another person, especially someone you love, is a beautiful thing. To be able to lessen that person’s pain is wonderfully affirming. Every new day is a gift. But the danger for caregivers is that we get so enmeshed in caring for someone else that we ignore our own needs and deny the need for help. 

We can’t do this at all if we try to do it alone. 

Having someone help you doesn’t mean that you failed; it just means you’re not in it alone. 

Eric Messer

  1. JAMA.1999;282(23):2215-2219. doi:10.1001/jama.282.23.2215
  2. https://www.archangels.me
A basket full of vegetables and pumpkins on a wooden table.

A GLAD THANKSGIVING

I have so very much to be thankful for this Thanksgiving. I am healthy, safe and warm in a beautiful environment, surrounded by people who love and care for me. There is absolutely nothing I need in my life right now. But there are times when it’s hard to be grateful – when someone I love is hurting, when the world seems to be on fire or I just don’t feel good, – when for whatever reason the future looks bleak. Gratitude is not the first emotion that springs to mind.

A friend told me about a simple acronym that helps to shake these moods. Maybe you already know about it. My friend heard it from her friend – who heard it…etc. I passed it on to my friends and it just keeps spreading. Friends tell me they keep a note on their desk or bathroom mirror. Others use it at bedtime to help them get to sleep. I find it comforting to remember anytime life blindsides me. It reminds me to be

G. L. A. D.

L: Something I LEARNED Nothing mesmerizes me like learning something new. I lose track of time, miss appointments, forget to feed the dog.. Learning gives me hope! It reminds me that there is something I have yet to try, something new to understand and share. To quote Taylor Caldwell, ” Learning should be a joy and full of excitement. It is life’s greatest adventure….” I agree.

A: Something I ACCOMPLISHED – William F. Buckley*, said “The enemy of melancholy is industry. ” While taken to extreme this could be a way to avoid my problems rather than solving them, it is certainly true that I feel better when I stop fretting and just get busy. I don’t have to run a marathon, prepare a gourmet meal or plant a palm tree. I just have to get busy; paying bills, washing dishes, cleaning closets – it doesn’t have to be a big thing.

D: Something that DELIGHTED me. This is magic for me. There are so many times in any day, no matter what’s happening, that are just simply delightful. You know the feeling – your heart skips a beat and no matter how bad you feel, you can’t hold back a smile. You have to be alert; It’s fleeting – a baby grins at you over her mother’s shoulder, a puppy cocks a floppy ear, a rainbow appears after a storm. Sometimes just an Amazon package! I just need to LOOK for those things instead of obsessing about my problems.

Unfortunately, life sometimes throws such a curve ball that all you can do is hurt. But in my experience, it’s not the big problems that get me down. It’s the little gnats of life, the clogged sink on Friday night, the package lost in the mail, the fender-bender. That’s when I need to remember to be G.L.A.D!

*For those of you both after 1980, William F. Buckley was a well known writer and TV personality. https://en.wikipedia.org/wiki/William_F._Buckley_Jr.

A silhouette of a person walking through a dark tunnel.

In Pieces

 

He was  â€œThe Man.â€

Strong,  smart, natural-born leader. Charismatic combination of cowboy and scholar.  My lover, my confidant, my rock. My Man.  As the popular songs says,  “I’m everything I am because he loved me.”

Always “healthy as a boiled mule,” in his parlance, his only nod to exercise  his daily walk with the dog.  He dismisses small nagging health problems, no more than annoyances, really, that set in after fifty. 
Busy years pass, his career flourishes,  grandchildren arrive.  The road ahead is bright as far as the eye can see. 

Nearing retirement, a rare form of neuropathy forces him to a cane   But  still he is a commanding presence.  Distinguished Elder Statesman, striding along with his cane.  His decline not yet detectable even to his inner circle.  Phone calls, emails,  invitations far too many to accept.

Still The Man….  

……even as  his gait becomes slower, sometimes unsteady.  Details began to slip past. his adversaries sense a crack in his armor.  Things seem to take longer.   The questions begin:  “Where will he retire?  Thinking of traveling?  Fishing?  Grandkids?  He’s offended.  He’s not planning to retire!  Always assumed  he’d die on the job.  
Anyway, good luck at replacing him at what he’s paid!  He’s practically indispensable.

Until he isn’t

Until a sudden attack of vertigo leaves him slumped on the podium, sends him to the ER.   Until he slowly, grudgingly begins to  face own mortality, considers retirement.

Which, to his surprise, looks  good!  Parties, plaques, awards. So many people thanking him for what he’s done for them, promise to stay in touch, to seek his advice, guidance.

But  they don’t.

The phone is silent, the  emails stop.  His calendar opens up. His supporters  have found another Man who gets the emails, the phone calls, the invitations.

He’s not the Man anymore.

  • Time to leave town for awhile. Get perspective on things.  Make plans, go on road trips, cruises. Spend time with grandkids.  Go fishing.  Get to the gym, visit friends.
  •  
  • But he’s quickly bored of trips; the grandkids are busy, the fish aren’t biting. There’s no assistant trailing him with a notepad.  He’s been “The Man†all his life.   Without the his work, exactly who is he?

A person sitting on the ground in front of water.

My heart bleeds.

And I just don’t understand.  My retirement was so liberating!   Retiring from a career environment gone toxic,  I embraced my  retirement.   Joined a swim team, a jazz band, began writing. But he can’t seem to find new interests.   I fret that he is not being challenged mentally,  push him into various volunteer activities, therapy, support groups, mind games.   One by one he tries them, which I know is only to placate me, and, one by one, finds a reason not to continue.  Surely he deserves, wants, more.  

But here’s the uncomfortable truth:  

I retired to my dreams,

he retired from his.

I don’t know how this retirement things works anymore.  I talk with friends, research the internet, find no answers.  Conclude that is because there are  none.  How A person sitting on the ground in front of water.to finance retirement?   Not a problem. Google  “retirement” and stand back.  Navigating   retirement, not so much.  Our generation has bought the real estate developers”   “active retirement† fantasy –  beautiful surroundings, robust health, loving friends and adoring grandchildren  

That’s not what’s happening for us.

His body, long neglected, begins to exact its revenge.  The buckling knee has to be replaced.  â€œDizzy spells†were really TIAs.   Cancers are narrowly escaped (or postponed)  by  “knick of time†surgeries.  Each treatment, each procedure takes greedy bites from his body, his spirit.

I am losing him.  In pieces.

His calendar fills to bursting once more; this time with medical appointments.  His vision is failing. A fall sends us to the ER on A person sitting on the ground in front of water.
Thanksgiving;  dinner is a glass of Ensure. He walks on his cane at the rate of a wedding procession. I bristle at expressions of pity on the faces of passers-by, wince as people with patronizing smiles address him as  “young man.†  

                    I wake up heartbroken every morning.

A person sitting on the ground in front of water.

His fragile skin cannot sustain the mildest abrasion.  There is almost no time when  a wound is not in in some stage of healing.   Falls are an ever-preset threat.  There is a gaping open wound in my gut.  

Attempts to restore my energy, revive my spirit fail, one by one.  I can  no longer meet the schedules of jazz bands and swim teams.  Surgeries, knee replacements,  medical appointments, take precedence.  Rarely see my friends. Only my love affair with words manages to survive,  crammed between the obligations of home and caregiving.  I ignore the warnings of doctors, family, friends,  that I am not taking care of myself. ” Helloooo?”  I think.  “Easy for you to say.  Have you ever tried this?”

Struggling to right the ship, I begin an aggressive “Age-in-Place†program – remodel the bathrooms,  replace the carpets with hardwood.  Add a porch, re-landscape the back yard against the day when traveling is
lemonaide and cookies on the porch.  Cruises and car trips are difficult now.  We spend more time at our lake house.  I replace the fishing boat with  a pleasure boat, outfitted for comfort, not sport. 

 A near-miss behind the wheel frightens him into giving up the keys.  I am relieved, but my heart sinks.  I dread becoming the family driver,  assuming  the care and feeding of the cars.  One more on the ever-expanding “to-do” list. 

His eyesight continues to dim,  his balance worsens.  Eventually it is no longer safe for him to be alone. He bumbles along at snail speed on his walker.  There are days when he seems the same as ever and I am seduced into believing that he’s back – the nightmare is ended.   But inevitably, days follow when he repeats the same question over and over, forgets what day it is, cannot remember the number of his favorite TV channel. There is no way to predict what the day, the hour, the minute.. will bring.  My attempts to relax, recharge, are interrupted by random calls for help with the TV remote, his iPad, the doorbell,  the dogs, something he dropped, a robocall.  I wrestle with my frustration, knowing his is far worse. 

I’m running on emptyA person sitting on the ground in front of water.

I can no longer juggle the demands of the household and his care on my own.  We activate his long-term care insurance, a frustrating, arduous process.  The insurance companies  seriously underestimated the lifespans of baby boomers; thus their adversarial, miserly approach to claims. But it’s worth the struggle;  the carers  provide much needed support and relief. I renew attempts at self care; enroll in an on-line writing course, spend time with friends, enjoy a weekend in Puerto Rico  with our daughter.  

Maybe I can make this work after all…

I encourage more social interaction, board games, maybe an X-box?  None of these  interests him.   His has become a life in small spaces, getting smaller. Fear of what may lie ahead simmers just below the level of consciousness.  I refuse to succumb to the fear.  Not because I’m strong, but because of what I have seen it do.

Frustrated, my doctor warns  me that I am close to collapse. I need to listen to the carers, let them do their jobs!   I listen, tongue in cheek.  “Doesn’t apply to me,”  I think. ”  I’m tired, of course,  who wouldn’t  be?  But the women in my family have ALWAYS taken care of their family members and with far less help. It’s what we do! 

And here’s something every caregiver knows:

  Love cannot be delegated. To anyone.  And it’s impossible to draw  boundaries in a world where nothing stays the same.  

I struggle to find a balance; resist giving over his care to carers.  Until,  incredibly, it is me that needs a knee replacement, me that is a fall risk, until chronic bronchitis leaves me bedridden  for days. Arthritis, long overdue for someone my age, invades my sleep.    My body’s not cooperating. I am chronically exhausted. Short term memory full of  holes. Miss appointments, misplace keys, phones, books, shoes even.  Caregivers’ fatigue, my doctor says, and this time he is firm.  I have to make changes. He prescribes them.A person sitting on the ground in front of water.

I am losing pieces of myself!

And I cannot clear the path for him  if I cannot see it. So finally,  I take self care seriously. Admit I need help from the carers and take it.   Show up for friends, get time away,  exercise, honor time for things that restore me.  I am learning  to stay in today; to enjoyA person sitting on the ground in front of water. the commonplace;  the aroma of fresh-baked bread, the sun breaking free of the clouds, the musical laughter of children, the  embrace of a friend, the antics of my dogs and most of all the gift of faith. I’m learning acceptance.

And so I go on.  His health and mine will continue to decline.   I do not “have this” and never will. There are just too many moving parts, too much uncertainty.  But  in the final analysis, what we both need most right now  is each other.  I just need to hold his hand and be with him.

 

A person sitting on the ground in front of water.

I can do this.  

 

 

 

A white and brown dog sitting on a wooden deck.

Goodbye Old Friend

 

My husband always wanted a Boston Terrier.  But the few I had known were just OK..nothing I could get excited about.   So when a new puppy was in our future, he insisted we at least go and look at Bostons. So I found the best breeder in the region and grudgingly made the trip deep in the south Texas countryside. To  convince him this was not the breed for us. So I could get on with the business of finding the  puppy (whose breed shall remain anonymous) that was really right for us.                 

It was love at first sight.

Who could resist that mischievous little face! But it wasn’t just that. He was so full of joy – so excited just to be Jake. And  we “got” each other. The breeder even noticed it – “He usually doesn’t like people..” she said.  Thirty minutes later I was headed home with my Jake.

As anyone who has spent any time with a Boston knows, they are sweet, loving, intelligent, AND stubborn AND full of mischief.  

Jake was not an easy pup. I stopped counting the shoes he destroyed.  I never could find him  when he didn’t want to be found.  He opened cabinets and unzipped backpacks.  He was an escape artist – we traced him to a friend’s pool two neighborhoods over, retrieved  him from a disgruntled farmer’s chicken coop.  We chased him down railroad tracks, through the  piney woods.   But  we always found him  and I think he somehow  knew we would. 

But Jake was so much more.   We trained as a therapy team and he was a star.  He brought so much joy to the people he visited.  When he was with fragile patients he was a different dog, calm, sweet, loving. When we brought Jesse home, he loved her on sight.  He seemed to think she was his puppy. He was her protector, her best buddy, they were inseparable.  They loved
A person sitting on the ground in front of water.rides on the boat  long walks, chew toys  after
dinner. They never fought.  I never heard Jake growl.  His heart was soooo big.

 I knew I would probably outlive Jake. But I didn’t  believe it.  I’ve never been prepared for the loss of a pet,  but this was a sucker punch. Cancer hit him hard and took him swiftly.  

Within two weeks of his first hacking cough, I was holding him in my arms as his last breath drifted from his body.  It did not comfort me that his suffering was brief or that he had a good life.  Nothing did. I was frozen. 

 After a few days I put away his harness and collar, his bowl, his favorite pillow. So I’d know he wasn’t coming back.  But weeks later, I still  expect to see him snoozing on the sofa, think I hear him barking at the neighbor dog, expect to see him bolting through the dog door, chasing Jesse.

Each day is  less raw.  And one day- it won’t be soon – as it has been for all the  little animals whose lives I’ve  privileged to share, I will feel more gratitude for the joy he gave me than the pain of his loss. 

 

 

 

A girl sitting on the ground with leaves around her.

Broken and Shared

 

A phrase from my faith practice that speaks strongly to me today.  

A person sitting on the ground in front of water.

Brokenness is all around me – in my family, my community, my country.  And  through this division, distrust and discontent, runs the meandering river of my loved one’s decline.

 

It’s overwhelming.

My impotent attempts to “fix things”, to re-establish “normalcy” — crash
onto the rocks of despair and heartbreak.   

My only hope of healing is to feel the brokenness and share it.

A person sitting on the ground in front of water.