If you are caring for an aging parent or spouse, taking care of yourself is absolutely essential.  But what does it mean to take care of you?  And more specifically – what does it look like?  Many articles extol the virtues of taking a day off, eating well and/or getting more sleep, etc.  Spas would certainly like it if you combated stress by spending a day in one, immersed in mud or swathed in warm towels after a deep tissue massage.

And I’m not knocking this advice.  In fact, I’d say that it is excellent! If you can head it you should…as often as possible.

But there is another level of stress that makes taking the day off, or even a hot bath seem completely impractical.  This is the kind of stress that takes root in a loved one’s health crisis.  It’s watered by financial concerns, fertilized by hospital stays.  To experience this kind of stress is to live “in the thick” of caregiving, where the line between the exhaustion that comes from being with your loved one and the worry that accompanies being separated is razor thin.

Reducing stress “in the thick” has little to do with stealing away for a day.  To survive it you have to focus on stealing moments.

Consider for a minute a caregiver I’ll call Dan whom I met several years ago in a hospital cafeteria.  Dan and his ill wife had traveled 2000 miles by bus so that she could receive an experimental treatment he’d read about on the Internet.  Now, 55 days into his wife’s hospitalization, the welcome at his friend’s apartment was wearing thin and what little savings he had was dwindling quickly.

“It’s like I’m staring into the great unknown,” he told me. “I don’t know what will come next or if I’ll be able to handle it so I’m doing what I can to stay in the moment.”

I didn’t know Dan but I was immediately and abundantly concerned for him.  The fact that he was able to focus on the present and resist the temptation to project into the future was the reason he had come so far but reality was beating on the door.

I knew that I could offer Dan emotional support, perhaps even assist him in finding more suitable housing. But as our conversation drew to a close it was his stress that worried me more than anything.  It was palpable.  Like watching a jetty being pounded by the ocean’s waves.

Stress like the kind Dan was experiencing affects every part of our being from how we think, to how we feel and from what we eat to how well we sleep.  Put simply, it laughs in the face of our usual coping skills and challenges us to develop new ones in order to stay afloat.  At the same time, it won’t be ignored.  Over time I’ve learned that combating severe stress like Dan’s begins with doing the thing that feels the most unnatural: focusing more intently on yourself.

“So tell me how, Maria – how do I take care of myself when all I can think about is taking care of my wife?”

“You slow down the pace just a little so that you can begin to take notice of the moments that feel even the slightest bit lighter than the others.  At first what you find might seem odd or insignificant, but make note of it anyway.  Moments add up, and knowing what to do to make you feel even a little bit better when things are especially rough is very comforting.”

I wasn’t sure what Dan thought of my suggestion, but he thanked me sincerely for my time and we agreed to stay in touch.  A few weeks later there was a knock on my office door and it was Dan.

“Guess what,” he said.

“What?”

“Bookstores play peaceful music and when I spend more than my usual two minutes in one, I begin to feel a little lighter.  I learned that the other day when it started to pour rain on my way to the hospital.  I didn’t have an umbrella so I ducked into a bookstore to wait it out.  I’ve been in this place a few times, but never noticed the music until there it was.  It’s such a small thing that I never would have thought twice about it before, but I wrote it down.”

“Bookstore music, huh?”

“Bookstore music,” he said. “Oh, and walking down this certain block when I leave the hospital.  It’s busting with restaurants and there are always people eating who seem so happy and full of life.  I get energy from that even though I can’t explain why.”

“I wonder what else works…” I said.

“Me too,” said Dan as he flashed a quick smile and turned to catch the elevator.

Three weeks after Joan’s transition from Spouse to Wound Care Nurse and almost eight years to the day of Joe’s diagnosis of dementia, he died.

The “silver lining” as Joan called it, was that he died at home, “where he wanted to be and where I wanted him to be too.”

There were times when I wasn’t sure it would happen that way.

Joan was exhausted from getting up every two hours to move him so that his sore wouldn’t worsen and under no circumstances would she consider a nursing home.  She’d had family staying with her by then – her daughter and her sister-in-law too.  “But getting up is my job. I’m his wife and I want to be with him as much as possible in the time we have left.”

And she was with him.

She’d been with him since she’d understood what dementia meant.  She was with him through the wandering in the beginning, the sundowner’s syndrome in the middle, the struggles to get him to bathe, to wear just one set of pants, to eat the meals she painstakingly made to suit his changing tastes.

Taking care of Joe required such intensity and focus – it was all-consuming.

And then, in a moment, it was over.

The woman who learned to take a two-minute shower, the very one who rarely slept anymore, suddenly had all the time in the world.

Her environment changed too. There would be no more hospital bed.  No more hiss of the oxygen tank, no more home health aides, nursing visits, or deliveries from Meals on Wheels.  As all of this sank in, Joan filled up with sadness. And she began the toughest transition of all from family caregiver to former family caregiver.

When we lose someone that has mattered tremendously to us, we lose a piece of ourselves too.  If we’re lucky, friends and family rush in to lift us up for a time, but sooner or later we’re left with the loss and life tugs at us to move on.   So often the tug comes well before we feel ready.

I’ve met many people for whom “moving on” proves to be an unbearably painful and sometimes insurmountable task.  Perhaps the caregiving lasted so long that the family member forgot who they were without it, or else the old skin of their former self didn’t fit anymore.

But not Joan.

“I’m hurting deeply,” she told me one day through tears, “but I know I did my best.”

And she had.  So many times I had witnessed her sacrificing her own well being to care for Joe.  So many times she’d shared that she’d cried herself to sleep and prayed for strength to keep going.

“You certainly did,” I told her. “And if you ever forget that, I’ll be here to remind you.”

“Good because I’m going to need that from you,” she said. “But today I need rest.”

*All identifying information has been changed to protect the client.

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This post is the last in a five-part series about the transitions in caregiving.

Transition #1: From Spouse to Family Caregiver

Transition # 2: From Go-It Alone to Asking for Help

Transition #3: From Private Person to 7-Eleven Manager

Transition #4: From Family Caregiver to Wound Care Nurse

It had been two years since Joe had come home to live with and be cared for by his wife Joan – a full five years since he was diagnosed with dementia.

He was declining now at a rapid pace – physically as well as cognitively.

Joan and I spoke often during this time.  She was exhausted from caregiving and needed all the emotional support she could get to keep going.  At my suggestion she hired more regular help so that she could take breaks and reluctantly joined a support group.

During the winter of 2008, Joe developed a bedsore on his lower back during a hospitalization in which his kidneys were the focus.  I’ll never forget visiting with them in the E.R. before he was admitted.



The lights, the noise, the constant prodding of Joe for his blood, to connect him to a monitor, to scan his body, it was all too much for him and seemed to make matters worse.

If you’ve never been inside an E.R., count your lucky stars.  Far too often it is a dizzying place.  But for those with dementia it can be completely devastating.

As I approached the small space where Joe and Joan were, I was recalling what Joan had told me most recently:  Joe had stopped speaking except in nonsensical words.

So when I arrived at the bedside I was taken aback when he grasped my hand and said: “After a while, I’ll go home.”

I turned to Joan who reached out her hand to Joe and said, “Yes, baby, we will go home.  Don’t you worry.  We’re going to get you home real soon.”

And with that Joan turned her head away from Joe and began to cry softly.  She understood as I did, that the chaos of the setting was affecting him. I could tell that she wanted to remove him from it but didn’t think she should.

Three days later when it was time for Joe to be discharged, Joan called me concerned that she would have to care for his wound.  I urged her to talk with the nurse and to ask that arrangements be made for wound care at home.   She did so and was assured that a nurse would come to the house.  This greatly relieved Joan because she was squeamish and nervous.  She feared doing something wrong and/or causing him any pain.

However, when the first week of Joe’s home-based wound care came to an end, Joan began to feel pressure from the nurse to learn the routine so that her visits could become less frequent.  When she resisted initially, Joan later told me that the nurse raised her voice.

“We can’t send someone out here forever!“

And so dementia required Joan to make a 4th transition.  This time she would go from being Joe’s family caregiver to his wound care nurse.

Wound care isn’t something that you might think the health care system would require of a family member, but it does…among other things. During this period Joan also learned to use a hoyer lift and to monitor an oxygen tank.

In the weeks that followed we talked more frequently and she shared her experience.

“The wound is deep,” she’d said one day, “and to be honest, just pulling the old bandage off his skin is enough to make me weak in the knees.  But it’s for Joe.  That’s what I keep telling myself. I’m doing this for Joe.”

By now Joan was exhausted and desperately needed to rest.  I began to wonder when the battle might end. Although she never said so, I knew Joan was wondering too.

________________________________

*All identifying information has been changed to protect the client.

Transition # 5: From Family Caregiver to Former Family Caregiver will post on September 8th.  It will be the 5th and final post in this series on transitions in caregiving. Don’t miss it! Subscribe to my feed by clicking here.

This post is part of a special series focused on transitions in caregiving.  If you enjoyed this one, you might enjoy the others.  They are:

Transition #1: From Spouse to Family Caregiver

Transition # 2: From Go-It Alone to Asking for Help

Transition #3: From Private Person to 7-Eleven Manager

One of the most important life lessons my mother ever taught me is one that I think is particularly useful for the adult daughters and sons out there who are searching for local services for their aging parents.

Are you ready? Here it is:

Whenever someone agrees to assist you with something, always ask for his/her name and write it down along with the date.

If I could supplement mom’s advice just a smidge I’d add that you ought to organize this info like you would a call log and keep it in a safe place.

The logic is so simple and yet so profound.

If you’re speaking with someone who isn’t likely to follow-up, then his or her name (first and last) is like a little insurance policy on the time you’ve just invested in speaking with him or her.  And if you get lucky and stumble upon a true gem of a human being (Hallelujah!), then learning his or her name is downright vital.

Why?

Because caring for an aging parent can feel at times like floating in rough seas; when you find someone who distributes flotation devices, it’s best not to lose track of them. (Conversely, those who leave you out there to drown despite your repeated pleas for help should be avoided at all costs and you should consider using their name to enlighten their supervisors!)

However, there’s something even more significant at play here when it comes to grabbing names, something that goes well beyond merely having recourse if the service or the information promised never arrives.

That something has to do with building connections.

This is the real reason that my mother (a.k.a. Queen of the Name Grabbers) never ends a phone call without providing her name and asking the person on the other end of the line for theirs  — her ultimate goal is to connect, to begin to matter to the person with whom she is speaking.  If she’s successful, she knows that he or she will be more apt to help her.

The more experience I gain the more convinced I become that this kind of personal connection is the key to getting good service in life (among other things)…

So…

Find yourself a dependable pen and a notebook that fits comfortably in your everyday purse or briefcase and promise yourself that from this day forward you will record the names of anyone and everyone who offers assistance to on your journey through caregiving.  Before long you’ll be name grabbing like a pro!

Not sure how to slip this question into the conversation?

No problem.

Here’s a tried and true example from my mother’s “old-school” playbook.

My mom: “Well yes, I would so appreciate it if you could get back to me with that information…Tomorrow would be fine!  And your name is?”

Oh yeah.  And try to ask with a smile. 

_________________________________________________

Do you think that “getting a name” has helped you to get better service?  What else has worked for you? Let me know by leaving a comment!

It was a Monday and Joan was rattled.

She’d called me early in the morning and left a message that described so fully and completely what often happens in the day-to-day of caring for someone with dementia.

“Maria, it’s Joan…” she said.

“An equipment delivery for Joe arrived yesterday morning for something that no one told me had been ordered.  Then a nurse came to take his blood.  It sure would have been nice if I’d know she was coming - I would have at least brushed my teeth!
 
I had just finished the breakfast dishes and was starting to fix Joe a sandwich when the pharmacy called to say that they were sending over a worker to pick up some medication that they gave me by accident yesterday.


Two people from the home care agency are coming over today to have me sign something, the case manager from the city is coming too to sign Joe up for Meals-on-Wheels and my next-door neighbor keeps popping in to see how I’m doing.

You know what I want to tell her?

I want to tell her that I’m not doing well at all!

I want to tell her that my quiet, private life has been taken over by Joe and this dementia and that so many damn people are coming in and out of my home all the time that I’m beginning to feel like I’m running a 7-Eleven! (She paused here to take a deep breath.)

I’m deep breathing like you tell me to, but this is crazy!  Okay.  Call me if you can.”

And there it was: Transition #3.

When your loved one is first diagnosed with Alzheimer’s or another form of dementia and you become the primary caregiver, no one tells you that there will be days like this or that the strength and patience it will take to endure them will be tremendous.

That morning I returned Joan’s call.

“So yesterday was one for the records and today is shaping up to be the same, huh?”

“You got that right,” she said.

“What can I do?” I asked.

“You can tell me that I’m doing alright.  That other people have the same things happen and that I’m not losing my mind when I start to feel so frazzled.”

I have to admit that what she said took me by surprise.

The woman with the tough exterior, the one who was reluctant to ask for help up until recently because she didn’t trust it, was acknowledging her own feelings and asking me to acknowledge them too.  It was a huge step and I felt honored that she’d called.

“You are doing more than alright,” I told her in a sturdy voice.  There’s no road map here! You are listening to yourself and to what you need.  You’re enlisting help at night so you can sleep, you’re getting Meals-on-Wheels so you can save time on meal preparation.  These are the things that are in your control and the best you can do is just what you’re doing.  Most importantly, you’re blowing the whistle when you need more support.”

Joan was quiet, so I continued…

“In the beginning, sometimes “help” doesn’talways  feel this way, but it will. That I can promise you.”

“I’ll have to take your word for it right now…” she said as the doorbell rang.

“Well, I guess my break’s over! Can we touch base tomorrow?”

“Definitely,” I said.

And as I put the phone down I held the image of Joan in my mind for a few seconds longer.  She was dressed in a red and black 7-Eleven uniform adorned with a name tag that read “Store Manager.”

And the bell over the door was ringing once more.

______________________

*All identifying information has been changed to protect the client.

Transition # 4: From Family Caregiver to Wound Care Nurse will post on August 25th. Don’t miss it!  Subscribe to my feed by clicking here.

The New York Times published an article recently that discussed a range of monitoring equipment that can be installed in your parent’s home.  These products promise family caregivers of older adults peace of mind through e-mail, text message, or voice mail notifications each day that detail the data collected.

• 6:00 a.m. – your mother’s feet hit the bedroom floor
• 6:02 a.m. – she enters the bathroom
• 6:15 a.m.  – she opens the refrigerator door
• 6:16 a.m. – she keep the cabinet door open for a minute before heading to the living room and sitting in her favorite chair.
• 6:45 a.m. – she retrieves her morning medications

…or doesn’t.

Supporters argue that monitoring equipment enables you to prevent mishaps such as your parent missing a dose of medication or worse, lying on the bathroom floor for hours after a fall, unable to call for help.

And there’s definitely something to that argument.

Frailty can increase the risk of falls and mild cognitive impairment or the early stages of dementia can make it hard to remember things.  In these instances monitoring may make sense.

But, I would argue, only in these instances.

In other words, I think there’s a sweet spot here – a middle ground – where the monitoring equipment can be valuable.  I’d define that spot as just after a marked decline in physical and/or mental functioning has begun and before hands-on assistance is absolutely required.

However, the companies that manufacture the monitoring equipment won’t be content to make sales within the sweet spot alone; their goal will be to convince daughters and sons around the country that their higher-functioning, independent parents need monitoring too.

This is where I think things go off course.

Despite the many commercials that depict resistant seniors who eventually see the light and gladly welcome the technology du jour to please their anxious daughters, this isn’t reality.  And if you tell your parent that you want them to have this monitoring equipment in their home and they don’t think it’s needed, reality may feel like a swift kick in you pants.

Simply put, your parent will probably hate this idea, or at the very least, hate the cost involved, even if you agree to foot the bill.  And you know what?  They should hate it if it’s unnecessary. Being monitored can make a person feel inept.  Before any steps are taken that might cause our parents to feel a diminished sense of competence, it’s critically important that we know what normal aging looks like.

When is it time?

A quick and dirty way to understand where your parents are on the aging spectrum is to talk to them and get to know their routine.  Chances are that if your parent requires some sort of assistance with activities of daily living (ADL), like bathing, dressing or grooming, you’ll know it.  And if this is the case, your parent shouldn’t be alone which means that help should be brought in, or your parent should move to an assisted living facility or even a nursing home depending on the degree of need.  To be clear, no amount of monitoring will be enough without hands-on assistance for the older adults in this group.

Being monitored can make a person feel inept.

On the other hand, if your parent is completing his or her activities of daily living [ADL] independently as well as his/her instrumental activities of daily living [IADL] (i.e. grocery shopping, meal preparations, laundry) then you’d be smart to forget about the monitoring equipment all together and celebrate what’s (still) working.   There may be a time when it will make sense, but the time is very likely not now.

Getting to the heart of the matter:

My hunch is that there are many adult daughters and sons whose interest in the home monitoring equipment is really connected to their own guilt that they can’t be there more often.  If that’s you, I hope you’ll forgive yourself.  We do what we can and most of the time that’s enough.  If guilt is a feeling you can’t seem to shake, take small steps to get more involved. Re-institute the old-fashioned check-in call at night and get to know your father’s neighbors on your next visit so that you have someone to call upon if you need to.

I hope that the big take-away message is clear by now: don’t fix it if it isn’t broken.

Older adults cling to their independence so fiercely because they know that it is an amazingly fragile thing.  Do what you can to nurture it for as long as possible because when it’s gone, it’s probably not coming back.

In big ways and small, Joan had learned that the only person she could ever truly rely on was herself.

It was a lesson first taught to her by her mother as a young girl and it was deeply rooted in distrust – not only in people but also in life and what it brings.

At the age of 12, Joan’s father left her and her mother and never returned; they were each devastated and very much on their own.

The pattern would repeat itself 14 years later when Joan was 26.  Her husband at the time, a man she’d known and loved since childhood left her too.  Only he didn’t walk out.  Shortly after kissing Joan and their son goodbye on his way to work one morning, he suffered a brain hemorrhage and died shortly thereafter.

“My husband dying like that marked the second great loss of my life,” Joan shared with me one afternoon over glasses of her signature lemonade.
“Losing my father was the first and now I’m in the midst of the third.”

The “third” she was referring to was Joe, her second husband, who had been diagnosed with dementia and seemed to be advancing rapidly at the age of 77.

Joe was the “gentle giant.” The man she’d taken a chance on despite her fear that he would leave her as her father and first husband had.  The very one she’d learned had been unfaithful to her for years.  Still, she welcomed him back home when she learned that he needed her.

But she couldn’t go it alone.

Joe’s dementia was a formidable opponent and there was no telling how long the match would last.

This woman whose self-sufficiency had been nurtured by two tragedies and a hard life as a single mother would have to acknowledge when she needed help and ask for it.  And the help would have to come from strangers, not the family members she’d reluctantly relied on to help her raise her son.  They were gone too.

It wouldn’t be easy.  In fact it would be uncomfortable, almost unnatural for her.

“I’m here,” I’d tell her during my regular check-in call.  “I’ll plan to call you once a week, but you can call me anytime.  And if you’re ever not sure how to handle something that happens with Joe, let me know and we’ll think it through together.”

This was the message I was painstakingly consistent with.  I knew I’d have to be so that it would take root.

And finally, it did.

It was a Tuesday afternoon when Joan called me to say that Joe was putting on multiple pairs of pants, one over the other and urinating in them.  This had been going on for days and she was exhausted from all the laundry and all the worry.

“What do I do?” she said.

Together we strategized and the plan we came up with stopped the behavior.

There would be many more calls like this, but this first one marked a major transition in Joan’s thinking that wasn’t lost on either of us.  She’d decided that it was time to ask for help and she’d trusted me to provide it to her.

The dementia had required Joan to transition to a new way of tackling problems and she was slowly adapting.

It would require much more before the end.

_________________________________________________

In the summer of 2006, Joan’s husband Joe was arrested.  Not by the police, and certainly not as the result of anything he’d done wrong.

No, Joe was arrested for a far more insidious reason – he was arrested by dementia.

All indications were that Alzheimer’s disease was the cause.

A strong, able-bodied man who’d held the same job for 20 years, who’d relished trips to Atlantic City and spending time with his extended family on weekends, was irrevocably changing.

In order to care for him his wife would have to change too; she’d have to transition.

This story really begins five and a half years earlier on a bleak January day.

It was then that Joe was told about the dementia by a physician in Brooklyn with Joan by his side.

And as so many older adults and their families’ experience, Joe and Joan were handed pamphlets about Alzheimer’s as the conversation with the doctor concluded.  They were encouraged to look them over and call if they had any further questions.

What the physician didn’t know (what so many physicians don’t know about the people who rely on them) was that Joan couldn’t read well.  Embarrassed to ask any clarifying questions on the spot, she later told me that the tone and pace of the doctor’s speech made her believe that what he spoke about wasn’t something bad.

The tone and pace of the doctor’s speech made her believe that what he spoke of wasn’t something bad.

Plus, she added, he prescribed medication. “Medication said to me that he was going to be alright.”

Of importance here too was the fact that Joan and Joe’s marriage was in turmoil and had been for years.  In fact, the doctor’s appointment that Joe had asked Joan to come to that day marked the couple’s first meeting in months – a play for sympathy, she’d thought.  “For all the times he’d left me without an explanation only to return several weeks later to say he’s sorry.”

As they exited the building, she tucked the pamphlet into her old winter coat that was indeed worse for the wear, the very one she’d soon replace without checking the pockets.

Years later Joan would learn what Joe had done with the pamphlet he’d been given.  Much like the diagnosis itself, a co-worker had shared that Joe had kept it in his locker among other papers.  “It was one of the many things he’d pull out from time to time to read when he thought no one was looking.”

Fast forward now to the summer of 2006 and to the arrest of Joe by the dementia.  Even more so than the meeting at the doctor’s office five years prior, the summer of 2006 was pivotal because it was when the diagnosis became real and the transition began.

Joe had been gone again for a few days when the police called Joan.  He’d been picked up across town, disheveled and disoriented. This was the second such call in as many weeks and Joan was becoming wrought with worry.  “When I saw him my heart sank,” she told me. “He was a mess – like he’d spent those days sleeping on the street.  That wasn’t like him,” she said. “Joe has always been concerned with his appearance.  He wanted to look good.”

Joe’s wandering had triggered a number of referrals and one of them was to me.  What followed was a conversation that picked up outside the doctor’s office five years earlier. Using pictures of the brain to help her understand what was happening to Joe and what would continue to happen in his brain over time, I spoke candidly about the care that he would need.

In contrast to the meeting at the doctor’s office, I had no doubt that what I had shared was sinking in.  She cried openly (something I’d later learn was uncharacteristic of her) and she also asked several questions “to make sure I’ve got this right.”

People all around the world become family caregivers to their spouses and yet I bet few could trace their transition back to a particular moment.

But there was a moment for Joan.

Sitting there at her dining room table that held two glasses of homemade lemonade she took a deep breath when her tears finally subsided and said: “He’ll live here now and he will sleep in my bed.   He’s my husband and I will take care of him because those are my vows.”

And so Joan made the transition from Spouse to Caregiver right in front of my eyes.  She would have no way of predicting the transitions or the work that lay ahead, but one thing was clear: neither she nor Joe would ever be the same.

__________________________

*All identifying information has been changed to protect the client.

Transition #2: From Go-It Alone to Asking For Help will post on Wednesday, July 28st. Don’t miss it! Subscribe to my feed by clicking here.

(Moving beyond the literal to explore the existential…)

A

sk any health care administrator today to define the term transitions in care and chances are that he or she will have a lot to say.  Although the phrase hasn’t reached Merriam-Webster’s radar yet, I have no doubt that it will.

The phrase often refers to the myriad transitions that older adults and their family caregivers make from one care setting to another.  These include: home to hospital; hospital to home; hospital to rehab etc.

And research shows what family caregivers have known for a while: patients are vulnerable during these transitions; in part because the quality of their care is dependent upon how well one setting communicates with the other.

The Affordable Care Act that became law in March 2010 will shine a bright light on these transitions in the years ahead and that is a good thing.

But in my work with family caregivers over the last several years I’ve had the privilege of witnessing and helping families to cope with a different but equally significant and meaningful kind of transition in care.

I’m speaking of the figurative, existential transitions.

The ones that occur any time an illness, injury or some yet undefined, nebulous change in the health of one person requires another to assume a different role.  These are the transitions that happen quietly, subtly and yet pack a considerable emotional punch; in one fell swoop they forever alter the relationship that was.

One client taught me more about these transitions that occur within relationships than any other.   I’d like to share her story with you over the next several weeks and talk a bit more about the five transitions that she experienced.

I’ll call her Joan but she is really every caregiver.  And by sharing her experience, I hope you will be inspired to share yours.

Transition #1: From Spouse to Family Caregiver

Transition # 2: From Go-It Alone to Asking for Help

Transition #3: From Private Person to 7-Eleven Manager

Transition #4: From Family Caregiver to Wound Care Nurse

At one time or another, in both serious and trivial matters, we’ve all benefited from the encouragement of someone whose opinion we trust.

First, here’s a trivial example of what I mean.

Picture it: A dressing room within a small boutique along your favorite strip of stores.

Your shopping today has been unfocused up until now, but that’s about to change. You’ve just found several items you like in this store and you and your friend begin to do some serious trying-on.

As you exit your dressing room wearing your first pick, you are cautiously optimistic.  You quickly head toward the three-way mirror at the end of the dressing room hall to give yourself the once-over.

You like what you see and know that this dress would be perfect for the event coming up next week, but the price tag catches you off guard.  If you were shopping alone, you know you’d put it back and move on.  It’s expensive and so, you would decide, it’s better to keep looking.

Just as you reach your arms toward the back of your neck to find the zipper and head toward your room, your friend emerges from hers.  She’s smiling widely, and without skipping a beat, you ask her the question that women have been asking one another in moments like these since Ethel met Lucy…

“Should I get it?”

“YES!” she says.  “It looks fantastic!”

You believe her, and the four words you utter next fill you with contentment:

“Okay, then I will!”

As you discard your other items and sashay toward the register with your perfect find, all is right in the Universe.

You’re content on the deepest of levels, and not because of the dress, but because your friend has given you the permission you hadn’t realized you needed to do something for yourself.

Many times in my work with those who are taking care of an aging parent, I’ve been reminded of the power of permission.

Family caregivers are by definition, “givers”, but rarely in my experience, “takers”.

“Taking”, they tell themselves both consciously and unconsciously, can come later…after the tasks at hand are complete.

Many don’t realize for some time that “later” is now, so that if the vacation, or the day off to decompress, or even just the hot bath isn’t “taken” now, it may never be, because the days and the tasks keep coming.

Just like in the shopping example I gave, permission in these instances, is powerful.  So when I can sense that it’s needed, I give it.

A few months ago I had just such an occasion when a woman who had been providing care to her friend of 20 years who has Alzheimer’s, came to see me. It was just before Thanksgiving and the thought of a holiday celebration with her extended family sounded about as appealing to her as root canal.

In the course of our conversation, her exhaustion – which was the result of transitioning her friend from the hospital to an assisted living facility a few days prior – was palpable.

Recently unemployed and under financial pressure to find work, the last several weeks had consisted of a steady stream of phone calls related to her friend’s discharge, and trips to and from the facility to drop off items that she’d hoped would help her friend to settle in.

As our conversation drew to a close and she began to gather her things she said the following:

“Before I go, Maria, I just have to ask you something,”

“Go right ahead,” I said encouragingly.

“Well,” she began, “the family dinner on Thanksgiving with my parents and a few of my brothers…with the questions and the judgments about what I’m doing to help Shirley and how I should be focused on finding a job…I just don’t think I can take it right now.”

Recognizing the significance of the moment, I spoke slowly and looked her straight in the eye as I had so many clients before her…

“So then, you don’t go,” I said.

“I don’t go?” she repeated.

“That’s right,” I said.  “You don’t go.”

After a long pause and a very deep breath she looked up at me and reached out her hand to grasp mine.

“Thank you,” she said.

And she stood up and headed toward the door.