Family & Relationships

Feb
07

This Is Life

by Christine

There is a doorman in our building in the City that had been aloof and cool towards me since we moved into our apartment four years ago. He was not unkind just distant. After he learned of my mom’s illness he came to me and earnestly shared with me his affection for his mom and family and his prayer that my mom would be okay. After one of Mom’s medical emergencies, I was leaving to go to Florida; he stopped me and spoke of the loss he felt when his own mother’s health was failing.  He wanted so desperately to help me find comfort when I looked up at him and said, “This is life”.  He responded, “Yes, this is life”. At that moment, he understood that I “got it”. 

It’s been seven months since Ed went in for the angiogram that started the family roller coaster ride. After Ed and Mom entered their respective rehab centers, my sister and I were able to return home. I have not seen my mom or brother for one month and daily, I fight feelings of guilt at not being in Jacksonville to monitor their situation. Every heath care professional we talked to tells us those patients who have family members that are visible get better care. I worry that both my mother and brother can’t represent themselves effectively right now but I can't walk away from my job, home and life without long term negative repercussions.  So the guilt. 

In addition to the guilt I feel sad when I think about my mom, alone in a rehab center that is starting to feel more like a nursing home than a temporary stop on her way back to her home of 40 years. We find it difficult to talk on the phone; her verbal skills are impaired. In the morning, she can communicate more clearly than in the afternoon but there is so little to share. At times, I wonder if she knows who I am.  She seems to forget who we are if we don’t have daily physical contact with her.  My brother had been unable to visit for days and she seemed confused when we mentioned him. 

My sister and I are working to figure out how to manage a life that is divided between two places and two sets of responsibilities.  The crisis point has passed but “life” did not revert back to what was before the medical emergencies.  We continue to sort out what is a real need and what is our own need to control. We had to go home and back to work, clean our own homes, take care of our children and husbands and we had to admit that we couldn’t do everything.

The authoritative advice given to caregivers who are managing long-term health care situations is, ask for help. Yes, that is good advice but how do you pass off the care of your mother to a neighbor or paid caregiver? How do you relax while wondering if your mom is afraid or lonely or if the insurance company is going to release your brother from rehab before he is really ready to go home? How do you manage the emotion that surrounds watching someone you love in physical jeopardy? 

Julia and I have slowly developed a “plan” to manage the new realities of life. We have agreed but have yet to test the idea that we both don’t need to be in Jacksonville at the same time during each medical flare up. We have divided responsibilities. She monitors Mom’s voice mail and returns calls and I interact with the rehab center. We set up a telephone tree so that key people have the information they need. Slowly we are building a structure to support life as it is now. But today, the real struggle is managing the guilt and sadness. The challenge is to find peace and joy in the midst of constant change and to remember that this is life.

Jan
24

When the Hits Keep Coming

by Christine

In my thirties, I developed a theory that every person has one really bad thing happen to them in their life and once you learned the lesson you had to learn from that one really bad thing, it would be smooth sailing from then on out. In my fifties, I discovered I wasn’t really very bright in my thirties. 

We were now spending 15-hour days at the very same hospital that my brother had been in and out of for the last 5 months but now with our mother. She woke confused and unable to speak as we all waited for the medical professionals to pull out their tealeaves and read mom’s future. We became hopeful as in the course of three days; she regained 98% of her cognitive abilities and full speech. The only real downside was she was weak and we figured rehab could build back up her strength. 

The family was still shaken from Ed’s medical trauma and now we were thrown into another life and death situation. In the past, our family had relied on absurdist humor to handle difficult situations but shock and fatigue were setting. Nothing was funny or fun. 

My mother had in place a living will; she had been quite clear in her directive that when the time came, she be allowed to die without unnecessary medical interference. She did not want to exist on life support half way between this world and the next. I had talked with other families who found themselves in the awful position of having to “pull the plug”. Everyone said, that it was not one big decision that got him or her to that point, but a series of small, seemingly innocuous choices. As each specialist came to us asking for one more test, we worked to understand the unintended consequences of our acceding to their desires. 

What we found was that each specialist was in the business of solving the problem in his or her area of expertise. The Neurologist’s response was to prescribe a powerful blood thinner to avoid more clots and when met with the objection that mom was a fall risk stated that she would just have to be confined to a wheel chair for the rest of her life. This would be a major lifestyle change and he could not understand our hesitation at agreeing immediately.  He seemed to take our questioning as a comment on his medical judgment. 

In response to all the pressure that came with each new decision, we came up with a vision statement. I know that sounds funny given that vision statements are normally reserved for major corporations trying to manage a large workforce but it was an organic response to the situation.  Our vision statement was Safe and Comfortable. Using this concept as our touch point, we measured each medical request against this maximum.  Fortunately, by the third day, Mom was ready to go to the next level of care.

The hospital caseworker approached us about two rehabilitation centers that mom’s insurance would cover, excitedly telling us that one was the “best” center in the area. We jumped at the chance to get her into the premier rehab center. Immediately my sister asked if we should visit the facility and I stated it was not necessary. My response was totally against type. I do my research on everything; the Internet was made for me and here I was agreeing to send mom to a facility sight unseen.  My sister agreed without comment. Again, fatigue was shaping our actions and decisions. 

I have since come to understand that as much as we don’t want to think about all the potential health problems that could befall us or those we love, it is important to do so when we are healthy and rested. I was learning at warp speed about Medicare, bridge insurance coverage and hospital procedures while navigating individual personality types. The experience with Ed and my mom has shown me that I need to be more proactive in my own healthcare beyond just having health insurance.  

First, choose a doctor before you need them and have a conversation about philosophy and treatment. My family history is riddled with heart and stroke problems, so I need a cardiologist. You don’t want the first time you meet a doctor to be when you are lying on a gurney in the Emergency Room unable to speak.  Also, learn where they have hospital privileges. You may select and vet the most competent doctor in the field you require but if they don’t have privileges at the hospital you are in, you will be starting all over with a new doctor who the hospital has chosen. 

Second, choose your hospital. If you are fortunate enough to live in an area with multiple hospitals, do your homework and make a choice. Don’t rely on what your neighbor does, how close the hospital is to your home or what the ambulance driver suggests. Know why you would go to a particular hospital.  Hospitals specialize and they have personalities. My father was a patient at Mayo in Jacksonville. Mayo has a team approach to treating patients with one doctor who acts as a family liaison.  The Mayo doctors met daily to discuss my father’s treatment. For a family such as ours, this worked well because we could get all our questions answered and knew who to talk to about our dad. My mother chose another hospital whose model was of independent specialist who made his or her rounds as their schedule permitted.  They communicated with each other though a chart that was kept outside my mother’s room. We found this a difficult and frustrating model. If we weren’t in mom’s room 18 hours a day, we would miss one of the multiple specialist treating mom and have to wait another 24 hours before getting our questions answered. 

Third, select a rehabilitation center before you need one.  Today, insurance companies are working to minimize costs so they push hospitals to move patients into a more cost effective situation as soon as a patient is “medically stable”. Rehab centers are an intermediate step when someone is really not ready to go home but doesn't need all the medical options a hospital offers. My brother needed to go to rehab but the closest facility that his insurance carrier would cover was one hour away from his home and doctors. (Even though there were some logistical challenges with the location of the rehab center, Ed received excellent care.) We learned that the real driver behind selecting a rehab center is insurance coverage. Obviously, the better your insurance, the more choices you will have. 

Fourth, understand your insurance coverage. Yes, I too, groan at that statement. To really understand your coverage, it is necessary to read the policy and then talk to the insurance company. Don’t bother talking to the guy who sold you the policy. Call your insurance carrier directly and explain you are trying to educate yourself before an emergency and ask to speak to someone in pre-authorization. Those folks really do have all the answers.  

It is not easy for a family member to be sick or hurt but the emotional pain is complicated by the necessity of making decisions in real time in unfamiliar territory. Making informed decision about doctors and hospitals before you need them can result in better medical care and reduce the stress on family. 

NEXT: CARE GIVING IN THE 21ST CENTURY

Jan
17

The Role of the Family

by Christine

There is a superstition that famous people die in threes. After the first two celebrity deaths are announced, the question is breathlessly asked, who is next? I have come to believe that when crisis strikes, it too, comes in threes. When the most powerful earthquake since records began struck Japan the result was a crisis but when it triggered a tsunami that caused the meltdown of multiple nuclear reactors along the coast, a true feeling of despair swept over the nation. The devastation seemed too great to overcome. 

After Ed’s surgery, an infection set in that required more surgery and dramatic treatments to save his life, the family struggled against feeling overwhelmed. But as the weeks progressed, Ed’s health improved and mom too started to recover both mentally and physically. Julia and I decided to return home vowing to spend more time with our mom and brother in the future. 

We were not home 24 hours when the call came. Mom was in the hospital. It appeared she had had a stroke. She was awake but was coming in and out of consciousness. This was déjà vu all over again.  Seven years earlier, my father had a stroke and the decision was made to hold off calling the out of town family. Dad had entered the hospital awake but was going in and out of consciousness. By the time the decision was made to call everyone, Dad had slipped into a coma. He died three days later never regaining consciousness.  Guilt and regret still needlessly surrounds the decision to wait for more information before telephoning remote family members.  Nobody was going to make that mistake again. Calls were made immediately and everyone quickly put travel plans in place.

I have always been fascinated by birth order and gender studies. I would read them like one does the morning horoscopes, looking for anything positive that applied to me.  Growing up Ed and I were very close with me being the bossy older sister. As adults, Ed and Julia became closer. Julia and I are close too.  But Ed and I have been distant for many years. Julia has been, the peacemaker, the glue between the siblings.

After Ed's open-heart surgery, Julia and I took on very specific roles in the family. I would come into my brother’s room and immediately give him an update on his progress. I believed it was vital that we kept Ed connected to this world and while he was sedated, I believed on some level he could understand what I was saying.  I told Ed the date and time and explained to him that he had done well during surgery and that his job now was to give into the drugs and get well. I would not allow anyone to discuss or say anything negative in front of him. 

Julia, on the other hand, could not speak to him without the fear of breaking down into tears but she could intelligently discuss with his doctors and nurses his condition. I would stand on the periphery of the room listening as they discussed his medical care and future lifestyle changes.  This “role reversal” surprised me. The bossy older sister stepped back while the baby of the family interacted with the “authorities”. 

During the recovery period after his surgery, Ed said, whenever he opened his eyes and looked at me, he saw a halo. Ed was amazed and a bit in awe of my halo. He told everyone that came into the room that I was an angel. I was, on the other hand, amazed that Ed would see a halo on me!  Our relationship had been strained for most of our adult years and to be anointed even in a drug induced hallucination surprised me. Remarkably it did allow the two of us to change old behaviors. 

What I witnessed during this family emergency was the breaking down of preconceived notions of each individual’s role in the family.  My sister was no longer the peacemaker who worked hard to make everyone get along; she became the tenacious medical advocate for my brother. My brother, who for years fought for dominance in the family because he was male, now stood back and respectfully allowed his sisters to make decisions on behalf of the family as he worked to heal. My role as big sister became one of comforter and peacemaker, a role traditionally held by my sister. 

What transpired was our ability to morph and evolve as individuals and family members. The real and frightening health crisis required us to put aside our petty childish games and work as a team, as a family for the greater good. I am not saying that in our complete exhaustion at managing the long days, bad diets and the ups and downs of healing that we didn’t snap at one another. What I am saying is that when we did snap, we were met with understanding and forgiveness. 

I do know that we are lucky. Crisis like these make many families break apart and in some cases they never speak to one another again. But what I have learned from our own family drama is that if you can come from a place of love, healing is possible. Not only the healing of the body but also the healing of the fractures in a family relationship that were caused by gender and birth order. 

NEXT: WHEN THE HITS KEEP COMING

 

Jan
10

The Crisis

by Christine

When we first started Footsteps our vision was to be an information portal for managing the issues surrounding aging and how to think creatively about aging. But as we started to evolve we highlighted individuals who live a creative life at every age. Our goal was and continues to be to present positive people and concepts at Footsteps. Our mission is to give a forum to those with real world solutions to living a creative life.

This past 5 months my family has been going through an aging evolution of sorts. Over the next few weeks I will be writing a series called “Walk the Walk” about how our family has handled and is handling a major health crisis that affected us all. It is personal and I will be walking a fine line between sharing relevant and beneficial knowledge and disclosing private information. What I have found as I have talked to others around the country, is, they too have a parent, grandparent or neighbor whose health is declining and nobody seems to know an elegant way to help them transition from their current living situation to another more fitting living arrangement.  Our hope is that as each of us travels this journey that we can share what worked and didn’t work with our fellow travelers to make the trek a little easier. And in those cases where it doesn’t get any easier we will find understanding and support.

It always starts with a crisis and then the realization that the situation was not as one believed it to be. I had a friend whose father died suddenly and the family quickly came to the realization that their mother was suffering from dementia. Their father had effectively covered up their mothers failing memory for years. It was a double loss for my friend and his family as they grieved the death of their father and the loss of their mother’s essence. 

In our family, the triggering crisis was our brother’s quadruple bypass. Ed is a long haul truck driver and had gone in for his annual physical. He failed his stress test and went for what was believed to be a routine angioplasty. It turned life threatening quickly so family members gathered at the “family home” to share memories and make peace where needed.  After Ed's surgery, an impromptu routine was implemented as family members took turns sitting by my brother’s bedside in ICU as his medical team kept him sedated during the worst of the pain. 

But the hardest and loneliest struggle was being played out at my mother’s home.  After my brother’s divorce 12 years earlier, he had moved in with my father and mother. What was supposed to be a temporary situation turned into a convenient way of life for everyone.  My brother spent all week on the road only coming home for 24 to 48 hours before heading out on the road again. After my father died, we were all relieved to have my brother with mom never questioning their relationship dynamic. It became easy to believe that Ed was taking a major role in decisions that were being made by mom. We never talked directly to Ed about our assumptions.

Now my mother was quickly declining with each day that my brother was in the hospital.  She was fearful, disoriented and physically failing. Over the previous year, she had become frail and during weekly phone calls with my sister, Julia or me, she would seem confused as to the day of the week. We dismissed it with a joke, saying that we too get confused at times. Still we took steps to bring in someone to spend time with her, taking on such duties as driving, grocery shopping and cooking. Mom jokingly said, “We had hired her a friend”.  Denise also reassured us that Mom’s memory lapses where tied to her blood sugar spikes; Denise maintained that eating well and routine insulin use would take care of her failing memory.  

As mom said many times,  “Denise is good to me” and it was easy to allow Denise, a RN and paid caregiver, along with Ed to take leadership on mom’s care. But now, Ed was in the hospital and we could all see that more was going on with mom than we realized. 

As days turned into weeks we took up residence in Mom’s home instead of staying in town for only a couple of days at a local hotel. Julia and I quickly came to understand that things weren’t running as smoothly as we once believed. We learned that home maintenance was being deferred; Mom was not taking proactive action on her own health issues and both her short term and long-term memory were failing. As diligently as Julia and I had worked to monitor our mother’s aging process long distance, we had failed to see what now appeared to be obvious signs of decline. 

We all see a situation from our own vantage point. Julia and I live out of town and until we actually stayed in our mother’s home, we had believed that her living situation was more controlled than it was. My brother who came home for only brief time periods believed that mom’s refusal to carry out routine home maintenance was tied to her depression era mentality and not a symptom of a bigger medical issue. And Denise whose training is in the care of the physical body not the mind, worked diligently on getting her to eat properly, take her medications on schedule and exercise. But it was a crisis that shifted our “world view”. 

I was aware that most stories about a family being forced to take action with an aging parent began with a crisis. For many families, it involved their parent giving up driving. With mom we bit the bullet and had the hard conversations about her no longer driving while developing an alternative that was as painless as possible. But now we were in the middle of a crisis that necessitated everyone’s full attention and energy.  By the very nature of the word crisis, it is unplanned, inconvenient and coupled with other stresses of living.  We were now in the middle of two crises and for all our planning, we were “making it up” day by day.  

NEXT: THE ROLE OF THE FAMILY

 

Jun
08

Better Health Channel: What Makes Families Happy

by Christine

Excerpt: Happy families have certain traits in common. Communication, togetherness, sharing activities, affection, support, acceptance, commitment and resilience are typical in families that function well. Children benefit from regular mealtimes, affection, play, traditions and outings with the whole family. Unhappy families may benefit from professional help. Read the full article

Jun
08

Family and Consumer Sciences: Building Positive Relationships

by Christine

Excerpt: The decline of a parent’s health, death of one parent or financial pressures often mean an aging parent will need increased social and emotional support or services from family—such as help with meals, cleaning, transportation or financial matters. Sue, like many adult children today, is confronted with increased interaction with her aged parent and with decisions that will affect her life and her parent’s life. Read the full article

Jun
08

Psychology Today: When Parents Play Favorites

by Christine

Excerpt:

A large proportion of parents display consistent favoritism toward one child over another. This favoritism can manifest in different ways: more time spent with one child, more affection given, more privileges, less discipline, or less abuse. Research by sociologist Jill Suitor examines some of the causes and consequences of parental favoritism, which occurs in 1/3 to 2/3 of American families.

Read the full article

Jun
08

Family Dynamics

by Christine

Betsy married Bill Camden when she was 20 years old. During their 55-year marriage they raised three children, worked hard to be financially independent and continued to be best friends until the day Bill died. Prior to Bill’s death, he managed all the family finances, including setting up a trust for the children and making sure their legal papers and wills were in order. As he aged, Bill talked to each of the children about what would happen in the event Bill and Betsy died and how the estate would be handled.

After a three-year struggle with heart disease, Bill died suddenly from a stroke. Two months after Bill’s funeral, Betsy decided to rewrite her will to make her oldest grandson, George, the executor of the estate and remove her children as executor as had been planned by Bill. Additionally she made George her healthcare proxy and granted him Power of Attorney. When her oldest child Barbara tried to talk to her mother about her decision to make these changes, Betsy became angry declaring that she did not have to discuss this with anyone including Barbara. Barbara withdrew and did not mention it again. Seeing their mother’s reaction to Barbara’s attempt to open a dialogue about the legal changes, her two brothers avoided the subject also.

When Betsy had her first transient ischemic attack (TIA) while talking to Barbara on the phone, Barbara contacted George about getting help for his grandmother. By the time George called Betsy, the attack had passed and not seeing the symptoms first hand, George dismiss the event as just a misunderstanding between his grandmother and aunt on the phone.

Six months later a second attack, lasting several hours, finally convinced George that something was indeed wrong with his grandmother. George came in and independently made decisions and plans in which Barbara and her siblings had no impute. Barbara recognizing that she was powerless to impact her mother’s life avoided any meaningful conversation with mother, keeping all interaction and conversation superficial. By the time her mother died, Barbara and her brothers were merely spectators at their mother’s funeral.

While everyone agreed that George had made good decisions during Betsy final years and was an effective Executor after her death, the family dynamics had changed. The once warm relationship between George and his Aunt became guarded and overly polite. And for years after Betsy’s death, her children continued to question why Betsy made the changes, never to find peace or understanding in their mother’s decisions.

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