Tag Archives: caregivers

November 7, 2012 · 6:31 pm

Saying goodbye

While my “other mother” was lying in her hospital bed at St. Joseph’s Medical Center 10 days ago, in between periods of stark awareness, my mind kept rewinding and fast forwarding. I rewound to a night thirteen years ago when my mother was in a different bed in St. Joseph’s, fading in and out of lucidity following procedures that first discovered her late stage lung cancer and then sought to repair a hole in her lung so that she could go home with hospice. But I was also fast forwarding, imagining the day that I will hold my father’s hand while he struggles to leave this earth. I think that’s how it is for many people: when we lose someone we love, we also think about the others we have lost, and those who we cherish and are losing.

I almost published this journal entry from February 16, 1999 just before I headed up to Washington state. When I returned Monday night, it was the first thing I saw on my desk:

Last night, I spent the night with Mom at St. Joseph’s Medical Center. Two-and-a-half weeks into her stay, following her diagnosis of lung cancer, she was for the first time completely lucid.

At about 9:45 p.m., Mom was looking at the ceiling. I asked her if she was thinking or looking at something. She replied that she was thinking.

Over the next hour, in quiet and measured tones, she said goodbye to me. She began by saying, ‘You’ve been a wonderful daughter.’ After a few minutes, she added, ‘You’re a very competent woman.’

I realized that she was beginning to say goodbye. I wanted to tell her how much she meant to me but the words seemed so inadequate. I told her she was a wonderful mother — strong, loving and nurturing. I remember once, when I was quite old, that she had responded to my sadness by pulling me on to her lap in my Nana’s rocking chair.

I hugged her and apologized for crying. She said, ‘Why not?’ Then she said, ‘You are a beautiful daughter; now get some Kleenex and blow your nose.’

After a few minutes she said, ‘We’ve had a wonderful life together. Sons are special but there is something very important about a daughter.’  She tried to express her thoughts about what makes daughters different and struggled a bit with the right words. She said, ‘Daughters are more emotional.’ It seem to me that what she meant was that daughters are close to one’s heart in a different way.

I said to her that my brothers had been wonderful throughout her stay. I told her they had comforted her and been loving and compassionate. I told her that we had not left her in the entire 2 1/2 weeks. This seemed to surprise her. I added, ‘We didn’t think you would want to be left alone.’ She said, ‘You were right,’ and smiled softly.

She said that her grandmother was in her late 90s when she died and that she couldn’t remember how old her mother was when she died. Implicit in her remark was her consideration of the age she would be when she died.

‘It’s one of the hardest things you ever do to say goodbye to people you love,’ she said, ‘but it’s important.’

I asked her if she was worried. She said, ‘Not exactly.’ I said we loved her and would be with her every step of the way and that God was with her.

She asked, ‘How is your Dad handling all of this,’ glancing at her hospital bed and surroundings. I said that he was sad because she is so precious but that he was okay and taking care of himself. I said I would take good care of Dad.

She said, ‘I’m going to outlive your Dad,’ and then she added, ‘at least I think so.’ Then she reflected for a while.

I commented on her strength and said that we were raising another strong woman in Maddie. She agreed and added, ‘And Tommy is wonderful, too.’ I reminded her what she had said emphatically to Maddie that morning: ‘You know what? I like you.’

Finally I asked if there was anything I could do to make this easier. She said, ‘Well, one thing you can do is continue to be the marvelous woman that you are — competent, with a high level of activity, a very high level of activity. The world needs you.’

She drifted off to sleep. Not long after this was written, she did make it home with hospice. She passed away the day after Mother’s Day, on May 10, 1999. I miss her.

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October 10, 2012 · 4:39 pm

What’s on your list of 5 self care things you do?

My friends and I seem to have entered a new phase. Once upon a time, our calendars overflowed with weddings. Then it was baby showers, and until recently, children’s graduations. Now our email and text exchanges are more likely to pertain to a parent’s health crisis. Usually coupled with news of challenges facing our young adult children.

We’re savvy enough to know that we need to take care of ourselves as we care for others, but busy and stressed enough that it’s really hard to actually do it.

My friend just texted me to say she was leaving town tomorrow to look in on her Mom, who’s had a setback in her recovery from surgery. True to form, she asked me how I was doing, and I replied that things are a bit better on several fronts.

She then asked, “So what are you doing for you?”

To which I replied, “What are YOU doing for you?”

I wasn’t trying to play the “gotcha” game (this isn’t politics, after all), but that’s kind of how it turned out:

“Crap. I knew you would turn that one back on me! You know I’m the worst at putting myself in the top 10, or 20, on any list!!! At best, I’m trying to learn to be a bit more compassionate for my own frailties. It’s a start.”

I’ve actually been thinking about this self care thing since my guardian angel, Jim, instructed me to list 5 things I would do for self care. That it’s taken me three weeks to think of five things tells you something.

My five are below. I’d love to hear what YOU do to take care of yourself as you care for others. We can all learn from each other — and maybe encourage one another to actually follow through on these things.

1.  Work out with others.

I often say that I live with the future. When you’re around a 95-year-old you realize the importance of strength and balance. I walked but I knew that wasn’t enough. I admitted that I couldn’t motivate myself to do things like – ugh – sit-ups or pushups.  I also thought it was unlikely I’d get my butt out the door to a gym class given my caregiving responsibilities. So, my big plan was to work out 4-6 times with a trainer and then miraculously carry on alone, having formed a virtuous habit. During my first workout, I was shocked at how poor my balance was – that and the fact I couldn’t do 10 sit-ups without holding on to my thighs to heft my upper body from its prone position.

That was four years ago. After a year or so, my neighbors who walked together twice a week for years expressed interest in trying it on for size. Now my driveway is a boot camp at least twice a week. Scheduling that time, and keeping it, is absolutely at the top of the list in terms of things I do for myself.

I figured my trainer, the amazing Kylee Neff, was an absolute liar when she told me I’d have more energy from working out. For about three months, I wanted to go to sleep early on the days we trained. But she’s right. Now if I can’t work out for a week, my energy and outlook isn’t as good. It’s as important to me as – gasp! – coffee once was. (Strangely, I also feel almost no need for caffeine.)

Working out with one or more friends also makes it hard to slack. After all, they show up in my driveway. But the group banter has the extra advantage of taking my mind off the momentary pain of whatever circuit Kylee has dreamed up for that day.

2.  Comfort read.

You’ve heard of comfort eating? I comfort read. My literary diet changes completely when I’m under stress. When my mother was dying of cancer, I was soothed by re-reading The Wind and the Willows. I’m a big fan of Mr. Toad, with or without the Disney attraction. Though I still read heavier fare (for example, The Looming Towers), I am drawn to cheesy and breezy. I read things like Deborah Harkness’ Discovery of Witches series (all two of them), J.R.R. Martin’s Song of Ice and Fire series (a.k.a. Game of Thrones), and the utterly ridiculous Sookie Stackhouse series by Charlaine Harris. Apparently I find fairies, witches and vampires comforting.

3.  Spend time with girlfriends.

My friends save me, over and over. Just knowing they are there is a huge source of support. Nothing against guys, and my husband is the Rock of Gibraltar, but there’s something about deep conversation with trusted female friends. It’s better than wine and chocolate. Recently, a friend and I agreed to set up a weekly time to meet. Her husband has Alzheimer’s and both of us have to coordinate social activities around caregiving tasks. It just works better to put something standing on the calendar. And, yes, it involves wine. Duh.

4.  Stay connected with Facebook.

I actually surprised myself with this one. So much is written about Facebook as a time suck, or about how Facebook is no substitute for deeper, face-to-face connections. But caregiving is isolating, and Facebook helps me to feel there’s still a world out there.

I love the pictures of kids and the quick posts about the sweet or funny things kids say. I travel vicariously through some of my friends whose jobs or travel budgets seem to take them everywhere. I salivate over my foodie friends’ posts about the amazing seasonal recipes they’ve dreamed up. I read the links to articles that appeal to my interests and appreciate the fact they were shared. I catch up on a friend’s recovery from a brutal cycling accident. I feel for the people (and animals) in Eastern Washington when my friend in E-burg posts update on the terrible fires there. It may seem a little strange but I even love the beefcake pictures posted by my gay friends; it makes me happy to know someone’s romantic life is more exciting than mine! Pictures of weddings, funny bits from George Takei, updates from nonprofits I care about… I enjoy almost everything in my news feed. And of course, I can always block the political posts that get a bit annoying this time of year.

5.  Find quiet time.

I’m not a true extrovert, although most people would assume I am. It’s hard for me to find an hour when I can be alone in the house, or at least alone before anyone else is awake. I crave and need moments when NO ONE WANTS OR NEEDS ANYTHING FROM ME. You may have figured out that I blog during these rare quiet moments. And when I say quiet, I mean just that. I feel so over stimulated that I need moments without music or TV. Silence is a balm.

So I’ll ask it again: what do YOU do to take care of yourself? This inquiring mind wants to know.

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September 25, 2012 · 4:13 pm

Too much love?

Can you imagine this image as an older parent? It’s not how we think about our role as caregivers, is it? (courtesy Teach Through Love)

Our first instinct as parents is to surround our children in a cocoon of love that cushions them against hurts both physical and emotional. But eventually, we find out that we do our children no favors if we never let them struggle.

I am learning that being a caregiver for an aging parent is not that different.

Since I moved my father to California in 2006, he’s spent the majority of the time at my house. He has his own bedroom with a cushy La-Z-Boy, television and bathroom. After giving up the family house where he lived from 1969 to 2003, I wanted him to feel this was home. At the same time, I wanted to know I could leave town and trust that he would be secure, with all of the support services he needs. So he’s had a one bedroom apartment in a nice assisted living community.

The back-and-forth worked just fine until July, when his health became unstable. Although he is now almost fully recovered, his emotional health continues to suffer.

My mother, during the final stages of lung cancer, expressed fear of dying, despite the deep faith that sustained her for so many years. My father wondered why, if there is a God, would he abandon my mother in her hour of need? Now it is my father who fears dying – and, in particular, dying alone.

Ten days ago, he asked me, “Can I come live with you?” He continued, “Living alone is no way to live. I’m afraid to die alone.”

Using my strategic planning skills, it seemed to me that we had to revisit Dad’s living situation. My objective, and that of my brothers, is to ensure that Dad lives with as little physical and emotional distress as possible. To that I had to add an objective about meeting the needs of my own family — oh, and taking care of myself, too.

It seemed to me that there were three possible solutions: 1) Dad would come to live with me full-time; 2) we continue to muddle through with more companion services at his apartment on the days that I am not available; or 3) we limit the number of nights that Dad stays at my house because of his increased distress when he has to return to his apartment.

I sought input from a social worker, a mentor, our home church pastor, his doctor, and a psychologist. Along the way I also had Dad evaluated for hospice and found out that he’s not close to qualifying for that type of end-of-life care. I had to start thinking about what would be best for a period of gradual decline that could last for several years – something I never imagined given that Dad has had three heart attacks, three strokes and three open heart bypass surgeries.

I also had to “listen” to myself. I realized I felt overwhelmed by the possibility of Dad moving in full-time. I really want that to happen, but now isn’t the right time. My Dad isn’t the only one who needs me right now.  I had to admit to myself that I felt exhausted.

The social worker shared a little tough love with me. She said, “He is distressed about the prospect of going back to his apartment because it isn’t ‘home.’ And it isn’t home because you won’t let it be home. He spends enough time at your house that the transition is difficult. He doesn’t remember exactly what happens there and it feels unsafe to him to return.” She went on, “As family members, you’re responsible for providing the caring, but not necessarily the care.”

My beloved mentor Jim offered this advice:

This is very hard to do: separate what is in his best interest and his care needs from your heart duty as a loving daughter.  Like most elders in his situation, he is becoming more child like — likes what he likes and won’t budge; wants his mommy really to take care of him although he would not recognize that is what he is doing to you.  If he does move in and a caregiver is part of the team, you will have to force him to agree to let that caregiver do his/her thing.  You almost have to write out a ‘contract’ that he has to agree to.  Obviously it is not a legal thing, but you use it to force him to focus on reality when he just wants it all to be different and for you to be there constantly.

My church home pastor suggested that I facilitate a casual visit with a priest. “Throw him a lifeline,” he suggested. “He may choose not to talk about his concerns about death, but he may be ready to talk.” And my psychologist friend suggested having Dad evaluated for anti-depressants. His doctor agrees that may be worth trying.

So what was decided? I had a conference call with my brothers last Wednesday night and we decided to try out an arrangement where Dad is limited to three nights a week at my house. I’ve visited him at his apartment every day and joined him for lunch to reinforce the message that the staff knows him and is paying attention.

He doesn’t love it, but he is responding to the message that there are some things I need to do right now to take care of my family and myself. He asks how he can help, and I say, “Just be patient, Dad, and be supportive when I can’t be here.”

Week one went well, but the big test will come this weekend when I leave town for three days… Stay tuned.

 

 

 

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September 17, 2012 · 4:38 pm

Ghosts in the rocking chair?

The spat that I described in my last post ended with the receipt of a sincere apology from my brother after a three-day marathon of back-and-forth emails. He also asked to “start over” with not just me, but my other brothers.

After time for reflection, I learned a lot, albeit painfully, from the whole kerfuffle. In keeping with the Buddhist proverb, “When the student is ready, the teacher will appear,” I stumbled across some teaching from an unlikely source: a child advocacy and parent-teacher education resource called Teach Through Love. Teach Through Love shared an article link on its Facebook page, and highlighted this quote:

“Similarly, our kids push our buttons precisely because they are our children. Psychologists call this phenomenon ‘ghosts in the nursery,’ by which they mean that our children stimulate the intense feelings of our own childhoods, and we often respond by unconsciously re-enacting the past that’s etched like forgotten hieroglyphics deep in our psyches. The fears and rage of childhood are powerful and can overwhelm us even as adults. It can be enormously challenging to lay these ghosts to rest.”

My brother said that his temper flares when he feels overlooked, ignored, or otherwise “disrespected” and he attributed this sensitivity to some disappointments in his life. When we met for dinner last week, I asked him if he thought it might be related to a longing of his for respect from my father, and perhaps the respect of his siblings for him based on birth order.

He scratched his arm repeatedly as he described his experiences with Dad growing up, beginning with Dad’s return from WWII. Dad later asked him to be “the man of the house” when Dad was sent on a solo tour out to Japan just after my sister’s death from leukemia. And when Dad was disabled due to a massive heart attack in 1962, he was called upon again. He was the same age then that my son is now. Instead of focusing on college, he was trying to help the family pull through the crisis of my Dad’s near-death and the aftermath of my father’s forced retirement from the Marine Corps. (In those days, a heart attack meant automatic and full retirement because, with limited treatment options, military command didn’t believe that a soldier would recover sufficiently to fulfill his duties.)

My mother and father often said that they raised their two eldest children, but they let the two youngest raise themselves. We had the same parents, but grew up in different worlds. My younger brother and I mostly grew up in a civilian world — a world, I might add, that Dad found quite deflating. I admired my Dad, but I didn’t think he was perfect. And I told him off – royally – when I was 21. I was tired of feeling afraid of my father, who retained command presence long after leaving the Marines.

When my brother sent his angry email, he felt disrespected by my younger sibling and me. The email that triggered the original firestorm pushed a flashing red button in his brain. But that button was installed long before.

 

 

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August 31, 2012 · 2:27 pm

Sibling fight!

Why is it that food fights are fun and email fights are not?

I was quite smug last night when I told a friend that I thought my brothers and I were really communicating effectively with one another. She had just returned from 10 days of overseeing her mother’s recovery from pneumonia and surgery, during which she was repeatedly second-guessed by her out-of-state sister.

Then I got an email from one of my brothers today, who reacted to an email sent by another brother. I won’t get into the details but I’ll share the zinger with which he ended his message: “…have the two younger sib’s simply cut out the two older sib’s from having a voice?”

I thought we were past this.

But the truth is that it is very, very hard for people who act like grownups in most situations to behave that way when something triggers half-buried resentment. We are all suddenly six.

There are a lot of “perhapses” that come into my mind. Perhaps the brother who sent the original email should have called instead of sending this particular message by email. Perhaps the brother who seethed over the email should have picked up the phone and expressed his concern to the sender, or to me (since I was supposedly colluding in the decision in question). We could have done better.

When we are stressed, as we are in no small part by Dad’s deteriorating health, we are reduced to the ugliest side of our personalities and temperaments.

It’s hard to keep one’s eye on the real issues here: how to make sure that Dad feels loved and safe, and how to preserve and perhaps strengthen our sibling relationships for the time when Dad is no longer there to bind us.

Right now I’m working on that last part.

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August 25, 2012 · 2:57 pm

My husband, the unsung hero

(Before you read this post, stop remembering the Andy Kaufman version of the Mighty Mouse theme song. I mean it. Stop. It. Right. Now.)

My husband and I have always had a 50-50 arrangement, if you average it over time. Statistical nerd that I am, I know that the average can mask a labile distribution of responsibility for household and familial duties. Sometimes it’s 75-25, sometimes 25-75, and occasionally even 90-10 (as in the time when we were preparing to move and my husband managed to break his knee on a guys’ trip).

Every time someone says to me that I’m an angel for taking care of my Dad, I remember that the guy holding my halo in place is my husband.

When I stop to take inventory, I realize that it’s a whole bunch of little things he does that accumulate to make a difference. When he comes home from work every evening, he asks if my Dad has his glass of wine. While I scramble to do my “magic” in the kitchen (anyone who knows me knows this is not a joyful experience), he’s contributing the comfortable routine of my Dad’s life. Dad used to have a couple of scotch and waters before dinner that over the years morphed into a glass of red wine. Dad’s almost lost his taste for wine at all, but that pre-dinner libation is a nicety in the not-so-nice world of advanced age.

Sometimes my husband “covers” for me if I have a morning meeting or am entertaining a couple of girlfriends. I’ve never detected a moment of resentment if I ask him to fix Dad’s breakfast or put his dinner on the table.

Taking care of Dad severely limits our flexibility to accept invitations from friends or go out of town for the weekend, things my extrovert husband would enjoy. But he never complains. Ever. I’ve never detected resentment, though he would be well within his rights to feel some.

And he shares his space often, as family members come to visit my Dad.

Perhaps most significantly, he doesn’t try to fix my problems when I feel down or a little worn out. Earlier in our marriage, we learned that my sharing a problem led to him trying to solve it, when sometimes all I wanted was the opportunity to vent. He sits with me and empathizes. I feel held inside even if we are not touching outside.

Next time your mental jukebox plays, “Here I am to save the day!” remember the great men who are out there standing behind the “angels” like me.

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August 12, 2012 · 11:13 am

What makes caregiving so hard?

I thought I knew what hard is. Hard was being nine months pregnant, diagnosed with pregnancy induced hypertension (ankles bloated to the exploding point), and getting ready to present the first full-scale consumer awareness study to the hospital system execs for whom I worked. Hard was working full-time, while trying to be a good mother of  a one-year-old and  studying for my M.B.A. during nap time and at night. Hard was working a full day with two hours of commute time on either end.

Being responsible for someone who needs your help and care, it seems to me, isn’t exactly training for the Olympics. But it can feel that way sometimes.

My Dad doesn’t need assistance with the basics. He dresses himself, puts his hearing aids in, eats independently, and has the toileting thing pretty much under control. My caregiving gig is a lot easier than many.

I think what’s hardest for me is the emotional burden – dodging obstacles, holding others up who worry from afar, and coping with the no-end-in-sightedness. I am constantly anticipating problems and talking steps to circumvent them, for example, clearing my Dad’s path of trip hazards and pre-emptively clearing dishes so that my he will not take it upon himself to do so, toodling from the breakfast table to the counter with dishes in both hands (and thus without either cane or walker). When a medication stops working and needs to be adjusted,  I run the gauntlet of conversations with doctors and care staff, trying to get accurate information about the situation (clarifying, clarifying, confirming) and calling and finally badgering someone into changing medical orders.

Dad is unstable enough that my brothers now worry from afar. I understand their vigilance, having felt just the same way when home in California during my mother’s four month hospice period in 1999. When I report setbacks, which have been more frequent during the last month, I get messages from my brothers asking if this is a crisis and whether they should book flights. I know their messages are code for, “Do you think he could die?” I try to reassure them. Understanding that you are going to lose someone is to begin grieving. I know they hurt. [Brothers who read this: this is not a complaint. I really appreciate your increased vigilance.]

We’re not there yet. Several times of late I’ve been asked what I will do when “this period is over” (code for “when Dad is dead”). I don’t know. I can’t plan. If I get my head in the future it will be even harder to manage the day-to-day. So I am actively avoiding long term planning.

Right now my whole world is the next two weeks, in which I hope we will stabilize Dad’s underlying congestive heart failure condition so that his weight swings and shortness of breath resolve, at least until the next unsettled period.

This shouldn’t be that hard. But some days it is. Fortunately, today is not one of them. So far.

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July 19, 2012 · 7:25 pm

The Caregivers’ Special? Wine and Cereal

Image

When my kids were little, the ultimate in lazy cuisine was what we called “the babysitters’ special”: mac & cheese. Out of a box.

Everyone is out tonight. Dad’s back at his assisted living apartment (which he insists on calling “The Hacienda,” even though that’s not its name). My husband is on his way to a guys’ weekend in Montana. My son is working in Tacoma, WA, where he attends college during the year. My daughter is at a rehearsal of a play she’s in, which opens tomorrow in Davis, CA.

I don’t have to do anything. Which includes cooking.

What appealed to me? A bowl of Cheerios and Byron Pinot Noir 2010. (I doubt this is what the winemaker had in mind for a pairing.) And I’m deliriously happy about the whole state of affairs.

I think I’ll live dangerously and eat my dinner in bed.

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July 12, 2012 · 4:55 pm

Worth repeating: family communication tips for caregivers

Full disclosure: that’s my hand holding Dad’s, and the blog post below was originally published on the Ray Stone Seniors website. The article was inspired in part by my recent blog post about my experience with family communication, but I thought this had some great tips worth sharing.

With more people living longer, many of us find ourselves balancing caring for our children with caring for our parents, often, while working full-time. Family communication – with parents and siblings – can either become an obstacle to ensuring that parents and caregivers get the support they need and want, or an opportunity to deepen relationships. According to “The Elder Care Study: Everyday Realities and Wishes for Change,” 60 percent of former caregivers reported that their relationships with the elderly relative they cared for changed for the better due to the experience. The same study found that working together to support an aging parent drew some families closer, while a lack of support or help had the opposite effect.

What’s working for these families who report coping well, despite the extra work of caring for an elder? Intentional family communications aimed at fulfilling the older person’s wishes can go a long way toward turning this period of greater dependence into a period that will be remembered as a loving, if difficult, time.

Research and our experiences at Ray Stone Senior Living suggest these 5 techniques can increase the likelihood that caregivers will succeed in achieving better balance, and strengthened relationships:

  1. Start by putting the opinion of the elderly parent at the center of the dialogue. AARP Foundation’s “Planning Guide for Families” cautions that families “should never make a plan or interfere in the lives of their loved one without their knowledge or consent.” Don’t expect, however, to learn what your parents do and don’t want in one fell swoop; be a good listener and look for opportunities to engage them and clarify their wishes when triggering events arise, such as a conversation about a neighbor or friend who is having health problems or making changes due to aging.
  2. Identify a primary contact person. Kathy Quan, R.N., B.S.N., P.H.N., author of “The Everything Guide to Caring for Aging Parents” suggests that identifying a point person to act as a clearinghouse of information can help avoid miscommunication and rumor mills. That central communicator will be charged with making sure that all family members get the same information at the same time. She also suggests having a conversation about ground rules for back-and-forth exchanges, such as: ensuring that everyone is heard, limiting the length of uninterrupted comments (“speeches”), avoiding finger pointing, and not reverting to old, unhelpful family communication patterns.
  3. Divide duties. The Elder Care Study found that 86% of family caregivers said they receive help from other family members, but almost half added that they didn’t get as much help as they would like. Often, women feel they carry more than their fair share of responsibility, but they may not challenge this pattern out of habitual gender roles. By making a list of activities that could be supported, family members’ different abilities and resources may be more fully utilized. Expressing empathy and appreciation for siblings’ contributions also can go a long way toward fostering positive relationships – and possibly more offers of help.
  4. Take advantage of technology-enabled ways to communicate (but pay attention to etiquette). Many families find email an efficient way to keep everyone in the loop – not just about medical problems or changes in medication or routine, but reminiscences that may be shared in the course of the day. Email is also great for attaching documents and photos, as well as passing along greetings from Mom or Dad to other family members. However, email is a poor choice for sensitive discussions or voicing a concern or criticism. Some families also use a family website or blog to stay in touch – not just about parents, but about extended family happenings.
  5. Don’t forget to keep Mom and Dad informed, too. Returning to point #1, the goal of all caregiving efforts should be to honor aging parents’ wishes while keeping them safe. As medical and physical challenges increase, it can be easy to slip into conferring with medical or other professionals as if the older parents are not in the room. Insist that others still treat your Mom and Dad as if they are central, even if it can be frustrating to slow down or repeat information. After a discussion, it can be very helpful to recap it in writing in the form of a letter or note, especially if your parent has any short-term memory loss.

Caring for one’s parents as they age can be tiring, but it can be a time to honor these loved ones by giving back some of the love and support they have shown you along the way. It may even strengthen family relationships into the next generation.

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June 30, 2012 · 3:31 pm

Family communication: seeing eye-to-eye through our diversity

Nephews, brother, sister-in-law, niece and Dad – out on a walk

Writer’s note: If you find this blog post of interest, you might want to check out a discussion on the NY Times New Old Age blog in which readers comment about communications techniques they have found helpful – a response to the article, “How Do You Keep Track of It All?”

My brothers and I look so little alike – and are so little alike – that it’s a matter of family jest. The brother who is closest to me in birth order and I once had to show our driver’s licenses to prove we were related to a woman who knew us both yet was unaware that we were related. My eldest two brothers are 15 and 10 years older than I am. The family unit they grew up in – which included a younger sister who died of leukemia in the 1950s – was a different one than the one my younger brother and I knew. It would be easy for us to have different ideas about “what to do” about our parents as they aged.

Instead, we seem to be in lock step.

Going back 15 years, when my mother’s dementia grew worse, and later, as she struggled with late stage lung cancer, my brothers and I evolved a system for communicating with one another. That system reduces stress for my Dad and makes it easier to ensure that he is getting the care he wants – and avoiding the care he doesn’t want. It also provides me with emotional support, and now it seems to be helping my brothers and I to imagine how we will be a family after my father’s eventual death.

That “system” started when my brother who is nearest in age called to suggest that we rescue Dad for a few weeks (by taking Mom on vacation) during the period when my mother had become increasingly agitated. Dad’s angina was increasing as her anger and confusion grew. Later, when my mother was eventually hospitalized and near death, our sporadic phone calls were replaced with much closer coordination by phone and email. We took turns staying with her in the hospital and took notes during our “shift”, briefing the next family member who arrived to sit by her bedside. On at least one occasion, our notes enabled us to correct what would have been a grievous medical error since her chart became so large that it was split in two – and some important information about her medication was not transferred to the active chart. When my mother came home with hospice, we tried to keep one another informed of her status as we rotated for three-to-five day stays at my folks’ house to oversee her care and my father’s recovery from his third bypass surgery.

In the past six years that Dad has lived partly with me and partly in an assisted living apartment, I’ve sent periodic “Dad Reports” to my three brothers with details about his spirits and physical health. Instead of quietly nursing resentment when I felt they weren’t doing enough to reach out to Dad via mail or email, I point blank asked them to step up their outreach to him. Our efforts were greatly enhanced by a “Presto” machine that automatically prints out emails sent to my Dad’s email address, thanks to a gift from my eldest brother.

As I have become more concerned about my Dad’s failing health, I have shared recent blog posts with my brothers, including my long rant after reading Joe Klein’s cover feature for Time magazine, “How to Die.” And it was that most recent outreach that uncorked a cascade of emails from my brothers that truly surprised and moved me. Not only were they aligned around preserving my Dad’s comfort and dignity, but they vocalized a commitment to our family unit.

My first reply came from “brother #2”:

I guess I’ll start by saying that for the past year I have been expecting a phone call from my Betsy or the staff letting me know that Dad had passed – I know that phone call is inevitable, and I know that every time I go up to provide respite for Betsy, I might be the one making that call to the rest of you. Selfishly, I don’t want that duty but if I have to be the one to make the call, I will respect Dad’s wishes. I know that he has lost everything he loved or took pleasure from in life, and has become a dependent. He can’t hear us, and I know it galls him.

Is there value in a rush to the ER? Well, the medical profession can certainly prolong a life that has become burdensome and often painful, but they cannot turn back the clock and give life in abundance. And ultimately, all the tests in the world probably won’t offer much that will give him a more abundant life.

I am conflicted by these thoughts – I like the family we have become and the strength that we siblings have found through Mom’s hospice. In many ways, I think that Dad has been the glue that bonded us all together, and I am fearful of losing more than just Dad when he passes away. But that’s not a reason to withold from Dad the end he wants.”

Then brother #1 weighed in:

(Brother #2) has done a good job of capturing my thoughts and feelings on this subject. And like him, one of my worries is that Dad’s passing will dissolve the glue that has kept the four of us close as siblings. I have the longest experience of the four of us with the reality of Dad’s mortality, going back to when Mom and I drove Dad to the Navy infirmary at Pearl Harbor when he had his first heart attack. I recall well how worried Mom was that Dad wouldn’t come out of the hospital alive, but yet he did, and he has hung on tenaciously for nearly 45 more years. As much as it distresses me, his race is almost run, and he has fully earned the right to let go when he thinks the time has arrived. Like (brother #2), I wouldn’t want him to die in distress, but neither do I think it’s fair to him to prolong his life if he wishes otherwise. 

It obvious that the time is drawing closer to when we will lose Dad, and as prepared as I have been for years for him to die, I still dread the reality. We have all been so incredibly lucky to have had Mom and Dad as our parents, and with Mom gone it will be even more wrenching to lose Dad as well. So, I think we should continue to dialogue about our courses of action and be available for one another. As the oldest sibling, I feel a good deal of responsibility for the three of you, even given the fact that you are all strong adults and don’t need me to look out for you. But old feelings and habits are hard to break…”

And lastly, brother #3:
“I have been acutely aware of Dad’s heart condition these many years, and recall thinking when we were off hunting by ourselves that something could happen anytime.As Dad approaches 96, he has clearly run a great race; he recognizes his time is coming and is at peace with that. I have always believed his end would come with a final MI/cardiac arrest; but who knows. Should we find ourselves in a situation where hospice is appropriate – perhaps the heart failure finally becomes unmanageable – then hospice would  be a good choice, and without further intervention other than palliative. On the other hand, if a condition presents that can be reversed or managed to maintain quality of life then I agree the right thing would be to obtain the care.
I agree with (brother #1’s) observation that Mom and Dad helped us to form a strong family. It’s unimaginable to me that we would somehow fall apart after Dad is gone. I enjoy being with each of you and will always love all of you.”
Not only did I find my brother’s emails restorative, but it gave me hope that we will find a way to enjoy one another into the future, despite our differences. Without this effort to communicate with one another, I am certain that the future would have seen us drifting apart, separated not only by physical, but emotional distance.

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