Our Aging Parents

Oct
03

Feeling the Loss

by Christine

Sometimes I forget she is dead. Mainly it happens when I am driving and I involuntarily think, “I should call Mom”. Then I remember; then I feel sad. It is not an overwhelming sadness just a fleeting shadow that reminds me that I can no longer talk to her. At those times, I call my sister.

Julia’s experiences are similar and she understands. We chat long enough to share our reaction to the uninvited impulse and to share an antidote-involving Mom. Our calls usually end in laughter and surprise at the phantom impulse that ambushes us during the most mundane activities.

I recall that months after my father died, I walked into a Hallmark Store to purchase a birthday card for a friend. It was the week before Father’s Day and the entire storefront was covered in Father’s Day décor. Midway into the store I realized I was going to lose it and burst into tears. The emotion came over me so suddenly and violently; I put everything in my hands on the closest shelf, turned and left the store.  I sat in my car and just sobbed.

Working through the loss of my mother has rekindled the feelings of loss for my father. I guess in my heart they are packaged set. But I believe the grief I feel is not just for the loss of my parents but over the loss of an era, the loss of my childhood. I was unprepared for this feeling; to know the people who were with me since birth are now gone. They are fully in my past; we are no longer creating new memories.

It is not easy to feel the sorrow but I have learned from experience that the pain will lessen and the good memories will once again come to the forefront. My life is good and I hold fast to the knowledge I have my parents to thank for where I am today.

Who do you have to thank for where you are in your life? How do you handle your grief?

Sep
30

Connecting With The One I Love

by Christine

I have jokingly said that life is “all about me” but in reality when you love and care for another person what happens in your life touches them too. While it was grueling for me to travel back and forth to Florida to care for my mother in response to each one of her health emergencies, it was draining for Marty to be left behind to wait and care for our home alone. When he dropped me off at the airport he would ask me when I was going to return. My standard answer was “I will let you know once I get there and see what is going on”.

After Mom’s funeral, I realized that Marty and I needed to reconnect. We needed and wanted to be a couple again after spending so much time apart. I suggested we take a trip together so that we could navigate “reentry”. That is the actual term therapist use when describing the process couples go through when coming together again after being separated. The longer the separation the bumper reentry can be.

The idea captured Marty’s imagination and for the first time in our relationship, he planned the trip from start to finish. He chose a charming B&B a little north of Camden, Maine and even planned several activities, including a sunset sail on a schooner. One morning we took the ferry over to the Island of Islesboro to ride our bikes and have lunch at the only restaurant/lunch counter on the island. For the most part it was a lovely time.

But our holiday was not without some tension. I had been away or preparing to be away for a year; my attention had been diverted from my business and my home. Even though it was my idea to take a trip, I found that I was restless to be home. At the same time, Marty was attempting to do all those things that we had been unable to do together for the previous year in one week. From 6:00 AM to 10:00 PM we were on the go.  After 4 days in Maine, I asked Marty if we could go home. He understood and agreed but I do believe he was disappointed.

But a curious thing happened when we got home. Together we started to complete a long list of neglected repairs and tasks at the house. As our home was mended and restored we found that our relationship was mended and restored. We were able to relax, take in a movie or two and even find humor in our differences again. Finding our equilibrium took a couple of weeks but it was important to both of us to take the time to reconnect.

My relationships are important to me and I take care to cultivate and nurture them. It takes time and it takes focus but I know my life is better because of the effort I put into them. How do you reconnect with a loved one after spending time apart? What do you do to nurture and care for your relationship with those closest to you? I would be interested in hearing how you sustain the bonds with your loved ones.

Sep
10

There is a Season

by Christine

After three months of bouncing back and forth between hospitals and rehab centers, the decision has been made to call in hospice and allow mom to go home. She has been stroking continuously during the previous 12 weeks, losing a piece of herself each time. The only pain she has experienced during this period was from the daily blood tests, MRI’s with contrast and other invasive tests that left her black and blue and exhausted. Her strokes are painless. Actually, we only know they are happening when she becomes childlike and silly followed by more degradation of her speech. 

As a result of the loss of her speech, we are not always certain of her mental state. The repetitive questions that the doctors used to ascertain her mental clarity were now useless. She could no longer answer, “Do you know where you are? Do you know what year it is?”  The humor Mom and the rest of us found in her answering those questions 20 times a day gave way to sadness as the year became 1948 and the name of the hospital became unintelligible.  

I am personally relived that Mom is going home and that hospice will be involved. I wanted to do this two months ago but some in the family were not yet ready to admit that medicine and the people in the white coats did not have all the answers. Mom is dying and we as human beings can do nothing to change that fact.  Two months earlier, Mom, my sister and I were in her room at the rehab center. We had just helped her dress for bed and she was now settled into the bed ready to sleep. She looked up at me and said, “Me go home”. I was startled by the childlike structure of her sentence and a wave of emotion came over me at her request. I softly said, “I know”.  She then said, “E.T. go home “.  I caught my breath, “Yes, E.T. go home.” Finally before drifting off to sleep she said, “Does anybody get to go home from this place.”  I left the room in tears. 

We are fortunate to live in a country that has first class healthcare and services for the sick and injured. But many have come to believe that the medical profession can “cure” aging and dying.  That just isn’t possible. Additionally, doctors and other healthcare professional cannot unilaterally manage the healthcare of another. It is a team sport. If one is not willing to eat a healthy diet, exercise and follow basic health guidelines then the expectation that you will see your hundredth birthday is unrealistic. (Yes, yes…somebody always mentions the “guy” who drank scotch along with his cigars every day and lived to be a 100.  He is the exception to the rule.)

But the decision has been made and Mom is going home. Going home to the world that my father and mother created; to the place that houses her memories and to the place that she feels safe. Her home will not be the same as she left it. Twenty-four hour healthcare givers will be in and out to help her with the daily tasks of living. She appears to understand that this is a condition of her going home and she is still very excited to be going home. I don’t know if mom understand what it means to go home under these circumstance but for the first time in three months she is happy. 

Mar
01

When to Call Hospice

by Christine

Ours is not the only family to find it difficult to navigate the end of life journey of a family member.  A friend of mine tells the story of her own family’s response to her grandmother dying. Her 93 year-old grandmother was taken to the hospital because her body appeared to be shutting down. After a thorough examination, it was discovered that she had a blockage in her intestines. The surgeon was quick to declare that he could repair the blockage by removing a small section of her intestines. 

The immediate response of the family was to allow the surgery with only one daughter, asking about mom’s quality of life after the surgery. The surgeon’s response was that he could not speak to that but he knew he could repair the blocked intestine. When the daughter asked again about the wisdom of operating on a fully demented 93 year-old whose body was failing, she was met with the highly emotional comment from a sibling that “we must give Mom a chance.”  Everyone was silenced fearing they would be viewed as turning their back on Mom.

After the surgery, the surgeon announced that the blockage was more severe than originally believed and he had to perform a colostomy. The family was stunned. Their mom/grandmother was living with one of her daughters who was barely managing as mom’s full time caregiver. How was she going to handling this additional physical reality? If mom needed more care, how were they going to pay for it?  

Sadly, my friend’s grandmother died three days later never regaining consciousness. The family’s last days with their beloved mother and grandmother were spent in the artificial environment of a hospital with her tethered to beeping and flashing machines on a time schedule dictated by the nursing staff. 

We have worked from the beginning to avoid this scenario with our mom. We have diligently tried to educate ourselves about the medical alternative presented to us and to learn about the intricacies of health insurance. We had discussions with mom about her end of life wishes.  We updated DNR’s and living wills. We worked to be prepared. But the decision to call in hospice is never easy or clear cut. 

For a couple of years, I volunteered for our local hospice team. I witnessed first hand the program in action as they helped individuals and families on this journey. I am a supporter and yet, it was still a difficult decision for me, for our family. Calling in Hospice makes a statement; it requires one to say out loud, we believe this is the end. 

Additionally, it can be a lonely decision because the medical profession is reluctant to call in Hospice. In many, I might even say in most cases, they resist calling in Hospice because it goes against all their training. They are in the business of saving lives, of fighting disease and healing the injured. They are not in the business of letting go. (And who would want a doctor that doesn’t give it his or her all each and every time one has a serious health crisis?)

The decision to call in Hospice can also cause tension within the family. Family members experience this journey differently, working though their own feelings and beliefs on their own time schedule.  It may be a struggle to get everyone on the same page at the same time. 

We were able to make the decision to call when it became clear that the medical profession could no longer offer corrective remedies to mom’s stokes. They could test and tell us that she had HAD a stroke but they could not prevent them or correct them. Mom was also more adamant in her declaration that she wanted to go home. Candidly, the only hold out to bringing mom home sooner was her family’s response. The medical profession had months before stopped offering solutions and mom had been saying she wanted to go home for weeks; we were the ones trying to “give mom a chance”.

National Hospice groups have assembled a list of signs for the pre-active phase of dying. http://www.nhpco.org/templates/1/homepage.cfm  I recognized that Mom was experiencing some of the signs. She became agitated and confused in between long periods of sleep and lethargy.  She did not want to eat or drink and when she did at the behest of her family the food was unappealing to her.  At times her breathing was labored.  

Hospice is not in the dying business; they are in the living business. Their goal is to offer care and support to individuals on the end of life journey so that they may live as fully as possible until the very end.  They want to ease the burden of family members wherever possible.  But still there is resistance. Somehow we believe that if we don’t declare that mom is dying, than she won’t be dying. Unfortunately, too many of us wait too long to make the call. The national average for length of stay in a hospice program is 14 to 20 days.  But in reality, when families look back over the last few months of life for their loved ones, they acknowledge the process started a lot sooner.  

My mother is home; her family and friends can visit as they please. She is sleeping more and communicating less.  People who love her now surround her. I continue to pray that my family will love and support one another through this process but I rest easier knowing Hospice will be on hand to guide us on our journey. 

Feb
23

Seven Things To Do Before A Medical Emergency

by Christine

  1. Get your paperwork done.  Putting off thinking through and writing down your wishes now may lead to undue stress and hardship on your family and friends later. It may also mean that your thoughts and beliefs will not be honored. A Living Will and Health Care Proxy are two basic documents that most hospitals ask for on admission.  These forms can be found on the Internet and are free. Footsteps does not endorse any site but an example of a free site is http://www.doyourproxy.org/ 
  2. Know your insurance coverage. To really understand your coverage, it is necessary to read the policy and then talk to the insurance company. Call the company and ask to talk to someone in pre-authorization to understand what is covered and for how long.
  3. Select your rehabilitation center. 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. Take the time now to find the rehab center that is right for you before you need one.
  4. Select your hospital.  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. Also, confirm that your doctors have privileges at the hospital you select. 
  5. Make a list of all the medications you are taking. This is one of the first questions that an emergency room physician will ask. Be sure your list includes the name of the drug as well as the dosage and how often your take it.  Additionally include on your list those drugs you are allergic to and be very specific as to what happens when you are given the offending drug.  You don’t want the hospital Pharmacist to rule out a whole class of drugs because you were too broad in your description.
  6. Select doctors that you trust and make a contact list for your emergency contact.  It is important to remember that you are building a healthcare team whose primary goal is to help you manage your healthThese folks will have your medical records and should know your wishes in terms of level of care. Once you build a team you trust, they need to be involved in caring for you.
  7. Get wearable identification. In November 2010, a car hit me while I was crossing the street.  I had stopped to take a few pictures of my mother’s childhood neighborhood and didn’t want to carry my purse so I left it in the car. Hours later I woke up in the hospital with a broken ankle and a good piece of my memory gone or scrambled.  After the accident, I started wearing an ID band. These are the bands that athletes wear so I don’t feel like such an old person. (Remember the commercial, “I have fallen and I can’t get up! One day I may need that technology but for now, I am wearing the “cool” stuff.)  You can have engraved a variety of information on the faceplate but normally it is emergency contact information and any allergies. Footsteps does not endorse any particular brand but I have attached a link to the company that was recommended to me by a marathon runner.  There are a variety of brands so I encourage you to find a “look” that works for you. http://www.roadid.com/Common/Default.aspx

Once you are in the paperwork zone, prepare your will.  It is amusing how superstitious reasonable people can be about preparing a will. I have a friend who was convinced that he would DIE if he put together a will. I explained to him that he WAS going to die whether he had a will or not so it was best that he just go ahead and prepare a will. 

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

 

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