Tag Archives: family communications

February 3, 2013 · 12:21 pm

Planning My Father’s Memorial

sympathy cards

Every day for weeks, I have written a different set of remarks to share at my Dad’s memorial service on February 16. All in my head.

Do I talk about how he softened as he aged, what a remarkable role model he is for all of us as we approach the prospect of living into our 90s? Or focus on how he broke the mold of his family’s dysfunctional example and grew into a wonderful father? Should I summon dear memories from early childhood, like happy times wedged in the front seat between Mom and Dad, driving around Kensington, MD, looking at the strings of colorful bulbs strung on houses at Christmas, singing, “Here we go looby-loo…?” Could I use a symbol that had resonance for Dad as a rhetorical device — perhaps a river, or a rose? Do I tell how he was still my Daddy, and share how I cried one last time, cradled against his powerful chest, after he died?

I sat down this morning and wrote, just wrote. Didn’t outline, didn’t plan, didn’t try.

Planning Dad’s memorial has been like listening to several radio stations at once. My brothers are broadcasting on their channels, sharing their experiences and their ideas, and I swear I am transmitting on several stations of my own. I’m so busy listening to my thoughts and feelings that I can barely hear theirs.

And it isn’t limited to my brothers. Often, my husband has said something to me in recent days and I’ve had to say, “Start over. I wasn’t listening and I didn’t hear a word.”

Slowly, however, the noise is abating. I am feeling less agitated by the emotional bombardment. I am starting to hear some notes that penetrate the muck, a phrase or two.

It wasn’t like this when we planned my mother’s services in 1999. I wondered to my brothers: is it because we’re doing this more electronically than we did 14 years ago? Or because Mom pretty much scripted her funeral and all we had to do was implement it? Or that Dad was the arbiter in planning Mom’s service and this one is on us?

I am feeling more hopeful that we will come to a place like that described by Alexander Levy in The Orphaned Adult:

Gradually, with unconscious cooperation, survivors weave a commemorative tapestry from these bits and pieces of shared nostalgia…. Story by story, smile by smile, and tear by tear, these memories intertwine, creating a fabric in which an image of the departed is preserved, within which survivors are enveloped, and by which they are forever bound.

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January 5, 2013 · 9:34 am

The Post That Shall Not Be Named

This blog post has alternatively been titled, “Laid Bare,” “Kicked in the Gut,” “Is This a Guy Thing?” and “WTF?” I thought about leaving the prompt, “Enter Title Here,” but that seemed a little too odd.

This post is about how, in the face of loss, differences in personality and coping approaches are laid bare. It’s about family. It’s about needing emotional support and not always getting it. It’s about how we are all human, including my brothers and me.

When my mother was ill and in hospice in 1999, my brothers’ personalities and mine were on full display. One brother responded characteristically by getting organized and applying his keen mind to the problems of medication and comfort; he was utterly reliable, a rock, and a little on the anal retentive side (said lovingly). Periodically his tough outer shell would crack and you could see the anxiety and pain that he held in check.

Another brother seemed to avoid coming around during Mom’s 3 1/2 month illness. He would come be her caregiver if asked, but there was a reluctance. After she died, he poured out his heart in the form of rituals and writing a speech about his memories of her.

From this and other experiences, I have learned how differently people grieve. I place no judgement on it. It just “is.”

We as a family — or as a team of caregivers — are not unique in the variation of our emotions and response.

My fellow member of the Caregivers Social Club (which has a membership of two) went through a health crisis last weekend when her husband, who has Alzheimer’s, was hospitalized with a life-threatening slow bleed in the brain. When we met for a glass of wine Thursday, according to our standing date, we talked about her husband’s sons’ responses. They talked about the brain bleed, the procedure and the prognosis for the procedure. But noticeably absent was any expressed emotion about seeing their father impaired by Alzheimer’s, acknowledgement of their own feelings, or sympathy for how hard this is on my friend — his wife — emotionally. But I know how hard it has been on her. While one part of your brain is whirring away managing symptoms and preventing problems with carefully executed clinical steps, another part is watching, feeling and hurting. She is constantly managing her husband’s emotions with patient reassurance, but most of the time no one is taking care of hers.

This week, I felt like I was kicked in the gut when two brothers cut their plans for visits shorter. Like my friend, I am busy – very busy – with Dad’s medical and physical needs. But I am also a little overwhelmed emotionally as I see new signs of decline arise every couple of days, if not every day. Dad’s not in crisis, but there is a slow-drip of worsening symptoms.

Maybe the mental thought process goes something like this:  Betsy sends near-daily email updates about how new problems have been identified and managed. Needed more caregiver help? She got it. Needed medications adjusted? She did it. Conclusion: “Betsy’s got it handled.”

Part of what has kept me going for the past four weeks has been looking at the calendar to the next date when one of my brothers would come and take over for 5-7 days. Unfortunately, through no fault of his own, the one who was to come yesterday got sick. But oh, did I feel crestfallen.

I wrote an email asking my brothers to start committing to a longer stretch at least once a month. I talked about the physical and emotional challenges, and about wanting make sure that I also spend some time with my husband, who now has my attention and company for a half hour or so before Dad awakens, and about 15 minutes after I come to bed and he falls asleep.

By happenstance on Wednesday night, one brother sent an email shortening his upcoming stay from four days to three saying that he needed to be home. The next day, my brother who had rescheduled his trip from January 4 to January 16 sent an email saying that he was shortening his visit from the requested six days to three so that he could celebrate a family birthday.

I hate asking for help. I really do. I’m a “handle it” kind of woman and always have been. I figure that my brothers know that. I think my emails all but beg for reinforcements.

My friend, Ellen, who I wrote when I was crying and needed to vent, observed that my brother’s email saying he was shortening his planned six day visit to three days contained no expression of feelings. I also thought it was interesting that he didn’t call. Just sent a two-sentence email. The day before, my Caregiver Social Club buddy described the same lack of emotional expression when she conversed with her husband’s sons.

Is this a guy thing? I don’t know. I think it’s a not-here thing and a scared thing. If you’re not here, you don’t see it and can comfort yourself by knowing Dad is getting great care. And a terminal illness – whether Alzheimer’s or congestive heart failure – is scary. Alzheimer’s perhaps especially so because of the genetic linkage (although the sons supposedly don’t carry the same gene).

When family members respond by sharing and pulling together, they grow closer. Unfortunately, the reverse is also true. I’m frustrated, hurt and trying not to be angry.

My hope is that when the brothers visit who have not seen Dad in a month or more, they will get it. They will understand that we need to be a true caregiver team and take turns. And that we each have something to say to Dad, some special kind of comfort that only we can offer. It’s time. Dad needs them and so do I.

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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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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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