February 2017 – Terri LaBonte- Reinventing Myself in Retirement

The Worst Day Of My Life

The single thing that I’ve dreaded most since my mother’s stroke has come to pass. We transferred her to a skilled nursing facility.

I thought I was prepared for having her in the nursing home, but I completely fell apart. The feelings of guilt, shame, and defeat about not being able to care for her at home just overwhelmed me. After nearly four months of struggling through, I was right back to the worst case scenario we were trying desperately to avoid right after she had the stroke.

After migrating between the rehab and the hospital several times and, finally, going to a hospice house, it seemed that death was not imminent for my mother. It was also clear that she really was not going to get better. Truthfully, she has been declining since her first rehospitalization after the stroke. She did pretty well in rehab the first month after the attack, but appeared to start on a downhill road when she went back into the hospital for some auxiliary issues. That road included several moves between the hospital and rehab facility. That road was pitted with many physical, emotional, and mental obstacles. While the doctors were able to stabilize the physical obstacles, her ability to process thoughts and communicate seemed to be fading away.

It appears that she continues to suffer from stroke-related language and cognitive impairment. This is fairly common in stroke patients and, given my mother’s particular set of circumstances, it is likely that it will get worse over time. It is similar to Alzheimer’s Disease, except that the cause and progression of the condition are different. The condition can cause death, but usually the patient passes from something else first.

By the time she went to the hospice house, the medical staff believed that the combination of the obstacles she was fighting would prove to be too massive for her to overcome. They believed it was likely that she would pass within a few days or weeks. However, something clicked in my mom’s brain, and she started to adjust to her condition. The hospice staff changed the prognosis. They still believe her condition is terminal and they are still going to provide supportive care, but they no longer believe she is in her last days. Because the actual hospice house is only intended for patients in the last stages of death whose symptoms cannot be managed in a “regular” (home, nursing home, assisted living, etc.) setting, the staff reluctantly advised me that it was time to find a longer-term residence for her.

Before she went to the hospice house, I worked with staff from what I call an “assisted living plus” facility. It is an assisted living facility with additional medical certifications that allow them to provide a higher level of care than most places. For most of my mother’s illness, our goal had been to get her strong enough to be able to live there. It seemed an ideal answer. It would be like she was living in a little apartment of her own, with privacy and as much independence as she wanted and could manage. Unfortunately, by the time she was facing release from the hospital for the last time, the assisted living facility staff evaluated her status and found that her needs were just too far beyond what even they could handle.

Kicking and screaming, I started looking at skilled nursing facilities. This is a tricky matter for many reasons, but one of the most difficult to manage is the fact that many nursing facilities operate at full capacity. They have lengthy waiting lists. In evaluating the residences, I had to balance quality ratings from Medicare, online reviews, my own observations on visits, availability, and proximity to my home. Of course, the facilities with the highest ratings were also the ones with the lowest availability. I ultimately picked one that seemed okay, had reasonably good ratings and reviews, and had availability. An added bonus was that the facility is very close to my home.

When I checked on my mother once she was at the new place, she seemed okay… calm and content. I was far from okay. The residence was not bright and shiny and new. The neighborhood wasn’t affluent. At times, I could hear other residents crying and yelling. Some of the other patients were holding stuffed toys or baby dolls, clearly convinced that these objects were real. I’ve always said that, wherever my mom ended up, I hoped she would have a quality of life approximating or at least reflecting what her life was about when she was living it fully. I wanted her to be in a setting that would help her form a social network with people who could become friends. I didn’t want her to be the most able person and be surrounded by people living shadow lives. I thought that would depress her and lead her down the same shaky path. Now, I was leaving her in a place where she was living with people in just the situation I dreaded. Unfortunately, the gut-crusher is that she became one of those people before she ever got to the nursing facility. In fact, I’ve learned that it isn’t so much that people who live in nursing homes have a severely reduced quality of life. It is more the reverse. People who have a severely reduced quality of life move to nursing homes.

Paradoxically, part of the sadness and guilt over placing my mother in the nursing home comes from the fact that my mother’s cognitive and language skills seemed to improve somewhat over the past couple of days before the move. Originally, I didn’t feel quite so bad about the nursing home because my mother seemed to be withdrawing from the external world- not being very communicative or alert. Everything I read about hospice talked about this withdrawal as being typical when people approach the end of life. The way she was withdrawing and sleeping so much, it didn’t seem to matter too much where she was. As long as it was clean and safe and met her basic needs and I was there frequently, I didn’t think it was going to make much difference to her. Then, just as the hospice people were getting ready to transfer her to a nursing home, she started consuming a bit more fluid and nourishment, staying awake much more of the time, and talking more clearly about more sophisticated ideas than she had since the stroke. I was almost sorry because it made the move to the nursing home seem worse.

Still, as time goes on, I am encouraged. My mother is truly only experiencing the tiniest sliver of the quality of life she enjoyed before the stroke. However, she continues to seem content, comfortable, and reasonably happy at the nursing home. Her cognitive and language skills are spotty, but I appreciate that there have been times when I’ve been able to communicate with a person who really did seem like my mom again. Because the nursing home is the longer term living situation, a lot of things are easier… both for my mother and for me. The health care professionals are very responsive and practical. The administrative side of the operation has been helpful and understanding. Between the nursing home staff and the hospice folks that work with them, they are finding ways to make my mom’s life more comfortable. They spend time with her. They talk with her. They are truly caring. On the other hand, they respect her wishes and don’t bother her by pushing her to do things she doesn’t want to do.

Maybe the most important factor in my journey towards acceptance of this new reality is that my role as caretaker is changing now. Since the medical staff is pretty much on the same page as my mother and me as to the type of care she wants, I have to fight fewer battles as her advocate. Since she is now where she is going to be for whatever time God has left for her in this world, I don’t have to keep analyzing different residential options. I’ve retained a law firm to help me with the financial burden and I’m working through the administrative issues more methodically, so I find I am spending less time and energy on those problems. My caregiving is now much more about just being with my mom, showing her I love her, and letting her love me.

Since my mother has been in the skilled nursing facility, I get to be just a daughter again. That has been the best unexpected positive result…. Of the worst day of my life.

My mother has been in the skilled nursing facility for about two months now. All things considered, everything is going okay. My mom seems reasonably chipper and content. I am with her at least six days a week. I can’t completely shake the sadness and guilt, but I’m holding it at bay most of the time. My current challenge is finding new ways to communicate and engage her as her language disappears and her thinking becomes more muddled. Anyone have any ideas for me? I’d appreciate any suggestions! Please share your perspective by leaving a comment. In the alternative, you can email me at terriretirement@gmail.com.

Have a loving day!

Terri 🙂

Happy Heart Day

When I was working, I learned about “skinny” words and “fat” words. Fat words have multiple meanings and are stuffed with connotations, making them subject to many different interpretations. Skinny words are direct, concrete, and specific. A fundamental concept of leadership is that, when giving direction, it is better to use skinny words. They tend to reduce confusion and are more likely to result in the desired outcome.

Now that I am writing a blog and not managing people, I am less interested in reaching a specific desired outcome. I’m more interested in suggesting ideas and stimulating thought. I’m renewing my relationship with words of all body types. I find that, when used deliberately, fat words can be evocative and effective.

“Heart” is one of those delightfully pudgy words. It just about explodes with meaning, memory, and feeling for most of us. We can easily identify many meanings for “heart.” I’d like to explore just a few of them on this Valentine’s Day.

First, we have the most literal meaning of the word. Our hearts keep our bodies going. They pump our life’s blood to the farthest reaches of our physical beings so that all our necessary organs have the energy to do their vital jobs. Heart disease is the leading cause of death in the United States. We do cardio exercise to reduce our risk. We scan the grocery store shelves looking for foods high in antioxidants to strengthen our hearts. We try to embrace low fat diets to minimize those pesky plaque deposits that can creep into our hearts’ highways through the body. Does it strike anyone else that it is pretty ironic that rich, high fat chocolates come in heart-shaped boxes? Of course, heart-shaped…. isn’t. Actually, the heart is shaped more like a fist, which, when I really think about it, is a bit disconcerting.

The beleaguered baseball players in the play Damn Yankees tell us ya gotta have heart. Miles and miles of it. I don’t know if we need miles and miles of it, but it is clearly true that a body needs a heart, in the most literal sense. Without that vital organ pumping away inside my chest, I have no life. On the other hand, without heart, I may have a life, but I may not be really living it. The heart about which our musical friends are belting is determination, persistence in the face of adversity, grace under pressure, and courage. Heart is what makes us root for the underdog. Heart is what enables us to do the things we believe we must do even when they seem impossible.

Which brings us to the “heart” metaphor most associated with Valentine’s Day- love. Heart means romance, but also love of all kinds. At this time of year, pink, red, and white hearts scatter all over everything. Flower and jewelry sales skyrocket. There is a certain pressure to put love on a pedestal and admire it from afar. In reality, though heartfelt love is up close and personal. It is a participation, not a spectator, sport.

A loving heart often requires deliberate decision making about what actions we take in life. When we decide to live a life of heartfelt love, we are deciding to view everything that happens to us and everyone we encounter through a lens of love. Love is not rationed. Loving one person does not reduce our capacity to love others. In fact, it increases it. Exercising our love muscles strengthens our ability to love, just as cardio exercise strengthens our literal heart muscles. As we become more adept at loving, we won’t love everybody the same way but we will love everybody better. Love involves both giving and receiving. It isn’t always easy or comfortable to do either. Sometimes, it almost seems impossible. To live with a heart full of love is the most beautiful way to live. That sort of life is as filled with meaning as that lusciously chubby “heart” word itself.” Living a life with a heartful of love is not for the faint-hearted. It requires that other kind of heart… the Damn Yankees kind of heart.

Have a Happy Heart Day, both literally and figuratively. At the heart of the matter, I wish you health, courage, and love. Oh, and have one or two of those rich, high fat chocolates that come in the heart-shaped box. Maybe just stick to the dark chocolate ones, though. All those antioxidants, you know!

I do realize that Valentine’s Day was actually yesterday…. but don’t you think today is still a great day to think about what is in our hearts? Now it’s your turn! What do you think of when you hear the word “heart?” Please share your perspective by leaving a comment. In the alternative, you can send me an email at terriretirement@gmail.com.

Have a heart-y day!

Terri 🙂

Food For Thought

When I was diagnosed with diabetes in 2001, I made drastic changes to my eating habits. I vigilantly read labels and minimized the number of carbohydrate grams I allowed to pass my lips. It was an exhausting process. In the beginning, it felt like everything was off limits and I was always hungry. I have memories of bursting into tears in the freezer aisle of the grocery store when I learned that sugar-free fudge pops did, in fact, contain a few grams of carbohydrates. It seemed like the last straw, if I couldn’t even eat sugar-free food. I soon learned how to balance what I ate and work within a reasonable diet. It still wasn’t easy, but I found I could manage my disease to prevent long-term damage without starving to death. Between diet, exercise, and oral medication, I stabilized my blood sugar levels and lost about 70 pounds over about a year and a half.

After losing this weight, I was not able to roust my still-overweight body off that plateau. It was discouraging. Also, life happened. I got a new job. The time I spent working and commuting every day increased significantly. Since time is a finite quantity, I had to find the extra time I needed for the job somewhere. I basically supplemented my job-related time by decreasing my sleeping time. Somehow, sleep seemed discretionary to my addled brain. The stress in my life increased. I found myself eating too much of the wrong foods and exercising less and less. I still did a pretty good job of controlling my blood sugar levels, but regained about half the weight I lost.

When I was working, meals were catch-as-catch-can affairs. I rarely had time to stop and breathe and think, much less eat properly. Typically, I would just push and push over the course of a day, going from one task to another conference call to someone waiting to talk to me until I was about to drop. When people with diabetes don’t eat or eat foods that contain lots of carbohydrates and minimal protein, blood sugar levels make their displeasure known. My blood sugar often protested my neglect by plummeting. There is a physical sensation when this happens. It feels a lot like panic. One feels a compulsion to eat everything and anything in sight to keep from losing consciousness. I am not sure if I actually would have fainted in those moments, but my body certainly felt as if I would. When this happened, I would stuff any food available into my mouth until I could feel the sugar coursing through my veins, which dissipated the panic.

When I retired, I did want to improve my health-related habits. I did begin exercising more and more. I ate better, partly because I just had more time and access to better food. When I am home, it is easier to go to the refrigerator and fix myself a healthy, appealing meal. Also, I found I wasn’t craving garbage food as much. Maybe the correlation between the need for comfort and for food decreased. When you are working like a madwoman and can feel the unpleasant sensation of adrenaline forcing itself through your body on its way to exploding out of your brain on a regular basis, it kind of makes sense to grab the quickest, easiest, most immediate distraction you can. Donuts and French fries might be bad long-term choices, but they are pretty effective immediate distractions. Once I slowed the pace of my life, I needed that distraction less. I also had more intervention time to remind myself that whatever food I was tempted to eat rarely tasted as good as I thought it would. At any rate, between the increased exercise and the better food choices, I lost almost all the weight I regained.

It is nice that I’ve lost this weight. I feel great. On the other hand, I’m back to the point where I originally started going off track. I’ve plateaued and am getting discouraged. I do believe that most of my progress since I retired has been due to the increased exercise. I have the sneaky feeling that, to lose any more weight and continue to keep my blood sugar levels under control, I’m going to have to take more drastic dietary measures than just slightly decreasing my consumption of high-fat and high-carbohydrate foods.

It is a struggle because I don’t want to feel deprived. I remember the feeling of deprivation I used to have when I first diagnosed. The feeling resembled despair. I felt hollow and foggy most of the time. I could put up with it, as long as I was seeing tangible results. As long as I lost weight, I could keep plugging along. Once I hit the point where the sacrifice resulted in nothing more than the status quo, I couldn’t seem to continue. It is also difficult because I eat like a four-year-old. I’ve always been an incredibly picky eater. Chances are, if a four-year-old won’t eat it, neither will I. That kind of limits my options as to what I will eat. Chicken fingers, french fries, spaghetti and meatballs, and ice cream typically don’t constitute a healthy diet.

I suspect that part of my problem is that I have some pretty odd beliefs about food. I know that I have to challenge these beliefs in order to feel satisfied with a healthier diet. Here are some of the weird beliefs that lurk in my brain:

I believe that when I have an opportunity to eat something yummy, I should eat it because I may never get the chance again. Never mind that there is a McDonald’s on every street corner and french fries practically grow on trees.
I believe the term “ambrosia salad” is an oxymoron. Ambrosia was the food of the gods. I just can’t conceive that the gods were eating any kind of salad. Ice cream sundaes, maybe, but not salads. I mean, salads are fine, but they don’t have the panache necessary to nourish the gods. Or me, for that matter.
I believe that anything I eat at Disney World doesn’t count. Two words. Pixie dust. Need I say more?
I believe bread is a health food. A mental health food. I firmly believe that, if I go long enough without bread, I will suffer a psychotic break.
I believe peanut butter is an entrée. Oddly enough, my endocrinologist is fine with me consuming peanut butter for dinner. Apparently, organic peanut butter is an excellent source of protein. The problem is that, because it has fairly high fat content, it isn’t a good idea to eat three ounces of it, the way one would eat three ounces of chicken or fish or beef.
I believe I must eat gingerbread on at least four separate occasions in November and December or Christmas will not come.

I know that these notions may seem comical. Some part of my brain actually does believe them, however. More importantly, I think that portion of my brain likes believing them and doesn’t want to give them up. I’m ashamed to admit it, but I’m not sure I want food that is completely devoid of whimsy, fun, and sensuality.

People tell me that it is possible to retain some element of joyfulness in one’s diet while still eating sensibly and losing weight. I’m not sure if I believe that or not. Yes, at times in my journey, I have managed to find some semblance of balance. On the other hand, I always seem to end up back where I am now- overweight and plateaued. It probably isn’t realistic to think that I am ever going to be the poster child for healthy eating. And maybe that is okay. Maybe the goal should just be incremental improvement or even just maintaining the status quo, which is actually not too bad.

Maybe the problem isn’t all those comical food-related notions I have. Maybe the problem is the other belief I hide in the dingiest corner of my brain. I believe that my eating habits and weight are shameful. I know that positive messages (like “bread is a health food”) are more likely to motivate action than negative ones (like “you should be ashamed of yourself for eating that”). Perhaps, if I could just find a way to be kind to myself about myself all the time, I could banish that negative message that I work so hard to shove into a corner. If I could just create more positive messages that reinforce the changes I want to make instead of reinforcing the not-so-healthy habits I already have, I might have better luck.

What do you think? Why do so many of us have such complicated relationships with food? Please share your perspective by leaving a comment. In the alternative, you can email me at terriretirement@gmail.com.

Have a healthy day!

Terri 🙂

Choices

As my mother bounced from hospital to rehab to hospital to rehab to hospital to rehab and back to hospital again, she became more and more frustrated. As she fought one infection after another, she became weaker and weaker. As medical professionals persisted in employing all manner of tests, procedures, and surgeries to try to extend her life, despite only a tiny possibility of success, she became more frail and more sad. She knew there was very little anyone could do to increase the time she has left. She could also feel the quality of that remaining life spiraling downward each day.

Most people will tell you they wouldn’t want to undergo any extraordinary or invasive measures if they were in my mother’s condition. It isn’t as simple as that sounds. The trick is in defining “extraordinary and invasive measures.” By the time my mom was in the hospital for the last time, nearly everything qualified as invasive from her perspective. And her perspective is really the only one that matters. She didn’t want any more hospitalizations, surgeries, medical tests, or IV lines. She didn’t want to move out of bed or do therapy. She certainly didn’t want a feeding tube or, even, to be badgered to eat when she didn’t feel like it. Sometimes, people feel like this because of depression and that depression can be managed with medication. In my mother’s case, it felt more like she just wanted to be comfortable. For whatever time she had left, she wanted to be able to decide not to put herself through anything that she found painful, uncomfortable, or annoying.

It wasn’t easy getting to this point. Because of the stroke, it is sometimes difficult to understand what my mom is thinking and feeling. Her language is definitely limited and she is very hard to understand. At times, it seems certain that she is thinking clearly, even if she cannot express herself very well. At other times, it seems like her cognitive ability is impaired as well. In addition, it was difficult for me to find the place in my mind and heart where I could let go of what I wanted and concentrate on figuring out what my mother wanted. I considered what I know of my mother’s views from before she had the stroke. We had numerous sad, cobbled conversations about life and death after the stroke. I am pretty sure I understand what she wants. She chooses to let go of trying to get “cured” and live whatever time she has left with comfort and some modicum of control.

As difficult as it was for me to face this crossroad and as difficult as it was for my mother to come to this choice, it is even more difficult to convince the medical system to let go of “cures.” Fighting this battle requires clarity of mind, courage of conviction, and persistence. Take it from someone who could barely articulate the choice without crying. You will probably have to cry often and painfully if you are trying to help a loved one free herself of unwanted, invasive medical procedures. This is especially true when the loved one has a disease that isn’t causing unbearable physical pain and doesn’t have a clear, common progression towards death in the immediate future.

I don’t really blame the medical establishment. Hospitals, rehab facilities, and most doctors are charged with curing and preventing the risk of further damage. They have legal liability if they don’t do everything possible to try to “cure.” Their collective mindset is to look at the patient as a problem to be solved. They will usually keep trying to think of something else to do, some other medication to try, some different procedure with which to tinker… just in case something will help. If one thing doesn’t work, they try something else. If you have decided to forgo the small chance of a “cure” in order to have peace in whatever time you have left, you will likely have to repeat and argue your position over and over again with the mainstream medical professionals. Working with most medical professionals in that situation is rather like employing a dance instructor when all you really want to do is buy tickets to a ballet… and the dance instructor finds it morally repugnant that you don’t want to don a tutu.

You may think that the answer is simply to stop engaging with doctors and other medical professionals. That might be an effective strategy but for one reality. By the time most people are ready to stop fighting for life at any cost, they also need medical professionals to help with symptom management and assistance with activities of daily living.

Just when I thought I could not articulate my mother’s wish to refuse any more medical intervention one more time, one of the doctors at the hospital mentioned “hospice.” He was pretty judge-y about her choice and made me feel horrible discussing it. At least, though, he led me to the proper vehicle for implementing it. Apparently, identifying an individual as a “hospice patient” helps to indemnify the doctors, hospitals, etc. against litigation. It is the formal way a patient and her family to go “on record” as not expecting the medical folks to try to extend life. It gives permission to change the focus of the care from “cure” to “comfort.”

When someone mentions “hospice,” it often feels sad and defeated and scary. People tend to think it means the end of a life. It certainly can. Hearing the word “hospice” did feel like someone was prying a chunk of my heart out with a hot knife. Still, when I was able to wrap my mind around the idea, the hospice counselors were a huge help in explaining the program, giving me an idea of what to expect, and validating that the choice we were making was a morally valid option.

Hospice care is usually available for people expected to pass within the next six months, but no one ever really knows for sure how much time anyone has left. In my mother’s case, the choice to embrace the hospice path means something quite different than a choice to let go of life. It means a choice to stop struggling. It means a choice to live the rest of her life on her own terms. It means a choice to spend her time engaging with her loved ones. It means a choice for freedom to spend the rest of her life in comfort and dignity. It is a choice for peace.

Does anyone else have a similar experience that they would like to share? It might help someone else who has to go through a difficult time. Please share your perspective by leaving a comment. In the alternative, you can email me at terriretirement@gmail.com.

Terri