Aging Well – No Matter What!!!
Whether you think of it as retirement, getting old or transitioning to a new chapter in life, at some point, you will become a member of the “older generation.” Typically, people have little or no plan for those so called “golden years.” So, my question to you is “how do you want to spend your golden years - aging well or letting life pass you by until you die?
If you answer is “I want to age well,” then it may be easier to do when everything is going smoothly, but what if you are faced with additional challenges such as being a care-giver, finding yourself strapped for cash, or having a chronic or terminal illness? Can you still age well? Maybe. . .. . .
In part it depends on your definition of the term. My favorite definition of aging well is “to be the best I can be every day given life’s circumstances.” Five years ago, my husband, Daniel, and I were aging well. Our best was being healthy, working, doing things with family, and exploring new places.
Then, a major life circumstance challenged us in every way. Daniel’s memory failed, I became his primary caregiver for four years until he went to a memory care facility, where he was exposed to COVID-19 and died. This article chronicles my struggle to age well through the phases of that life circumstance.
Daniel and I met when we were 12; we were married for 62 years. We raised a family, moved from the Midwest to the West Coast, and built a life together. We were a team and best of friends.
At age 78, Daniel was experiencing some memory loss but still held a full-time job as a website administrator. He drove the car, managed the finances, and took care of all technical problems – from computer glitches to broken pipes.
Then, he had to have emergency surgery. During a nine-day hospital stay, he was given anesthesia and a long list of medications. When he was released, his memory loss was dramatic and it never recovered. He lost his job, barely knew his family, and couldn’t remember what was said from one minute to the next. He lacked the confidence to go out by himself and was anxious when I went out. This man, who drove the streets of a major city for years, was forced to stop driving because he got confused and made poor decisions.
Subsequently, he was diagnosed with Alzheimer’s disease and dementia.
I visited retirement communities, as well as assisted living and memory care facilities. However, at the time he didn’t need that level of care and the cost was enormous. So, we remained at home, which was centrally located, known to him, and cheaper. I tried in-home care-providers, but Daniel would not let that work.
The article, Caregiving in the United States 2020, noted that
More than one in five Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53.0 million adults in the United States, up from the estimated 43.5 million caregivers in 2015.”
I became the one in five.
I never wanted to be a care giver, but that is what I chose to do with the help of my family. The interruptions, the constant questions, the arguing, and the need to repeat everything were wearing but manageable for a long time.
Then the pandemic and its restrictions appeared and my ability to cope was tested to the limit. The measures we had in place to keep him home no longer worked. Daniel’s memory declined further, he couldn’t go out, no one could visit, and I had no breaks.
Caring for someone with dementia was enormously difficult, I found. Daniel was a very different man than the one I knew and loved for so many years. There were new behaviors to manage such as his paranoia and misperception of events, big decisions to make about what was the best path forward, and a wealth of emotions to process. This was a huge burden filled with emotional damage, social isolation, and ill-health.
Taking care of Daniel became an all-consuming, full-time job - his abilities diminished, he became verbally abusive, he tried to run away, and he made unsafe decisions. At times, I experienced sadness, anxiety, and loneliness. Consequently, my stress level and blood pressure sky-rocketed. Seeking help and support was no longer a luxury; it was a must. Finally, with enormous sadness, I found a memory care facility for him.
To survive the daily challenge of living with Daniel, I developed a set of guidelines. Guidelines such as maintaining a healthy lifestyle and having a positive attitude are commonly discussed; however, I found other helpful guidelines. These included being willing to change habits, beliefs, and perceptions, to accept this new life, and to find resourceful ways of bouncing back during the difficult times. Generally speaking, I had to learn to take care of myself and be proactive.
The guidelines are as follows:
Guideline 1: Maintain a healthy lifestyle. Incorporate the six elements of wellness; physical, intellectual, social, emotional, spiritual, and functional.
Guideline 2: Develop a positive attitude. Identify my purpose and find things to be grateful for.
Guideline 3: Foster resilience, resourcefulness, and a willingness. They are key to moving forward.
Guideline 4: Practice self-care. I need to be healthy if I am to take care of someone else.
Guideline 5: Adopt effective habits. Choose habits that are motivating and supportive.
Guideline 6: Evaluate beliefs and perceptions. Release harmful ones and adopt helpful ones.
Guideline 7: Accept or acknowledge life’s changes. Only then can changes be made to age well while providing care.
Guideline 8: Examine choices. Ask how myself how well they serve me.
Guideline 9: Create an inner coach. Listen to a voice of encouragement rather than a voice of criticism.
Guideline 10: Be proactive. Don’t be a victim of life.
I did my best to follow the guidelines while Daniel was home, while he was at the facility and, now, as I begin this new chapter of my life.
Guideline 1 – Maintaining a Healthy Life Style
To maintain a healthy lifestyle, we went to the gym and walked. Daniel played pool at the Senior Center. I fixed nutritious meals and basically we followed the Mediterranean diet.
Socially, we got together with family and friends for dinners and celebrations. The two of us made jigsaw puzzles and watched television to stimulate his brain. Together we functioned well, but he was unable to function on his own. I was living his life for him: making the decisions, telling him what to do and when to do it – like what to wear to bed and how to take a shower.
I read articles and books about caring for someone with dementia, but many suggestions didn’t help. Here are three examples. One suggestion was to make lists and label things to help him remember, but he forgot there was a list or where it was. Another suggestion was “don’t take it personally – it’s the disease.” Intellectually that is true, but the behaviors and words were still hurtful. Finally, many articles seemed to assume the person being cared for would cooperate and that was not the case. Most everything, I tried, was met with resistance.
While Daniel was at the facility, I did my best to maintain a healthy life style, but it was quite clear that I needed to work on the emotional dimension during that enormously sad and stressful time. There were many tears.
As I begin a new chapter in my life – on my own for the first time, I continually strive to live a healthy lifestyle – exercising and eating nutritiously. I get together with my family, I am taking a Spanish class, listening to lectures, writing, and finding ways to manage my emotions. Overall, I am functioning fairly well, but still plan to improve on each dimension.
Guideline 2 –Developing a Positive Outlook
A positive outlook has two parts according to the literature: having a purpose and feeling gratitude. While it doesn’t really matter what gives you purpose, it does seem to matter that you have one. As research found, feeling that life has meaning is associated with experiencing positive health outcomes.
When people ask “What should I do with my life?” or “What is my life purpose?” they might really be asking “What can I do with my time that is of value?” Maybe, it is as Victor E. Frankl says:
Gratitude is the warm feeling of thankfulness you have towards the world, or towards specific individuals. You are thankful for what you have, and don’t seek more.
The YouTube video The Science of Gratitude explains it well. Click this link to read more.
Originally, my purpose was to have Daniel stay home with me for as long as possible and to pursue my goals and dreams. I worked to find things to be grateful - looked for good in the day, focused on solutions, and the knowledge that he was with me. Both my purpose and gratitude became increasingly difficult to hold onto as his needs and demands took over.
When he was at the memory care facility, my purpose was to do what was right for Daniel, to share my experience with others, and to become comfortable with this next chapter of my life. I was grateful that he was taken care of professionally, that I was able to visit him every few weeks and talk to him on the phone every couple of days.
My purpose for the next chapter of my life includes writing books - to share my story with others and help where I can. The first book is entitled Aging Well: 30 Lessons for Making the Most of Your Later Years and I am developing a newsletter: Life does go on.
Yet, it goes on with an underlying sadness that may never go away. Daniel is in my heart all the time. I am grateful that he does not have to live with such horrific conditions.
So, it is easier for me to maintain a positive outlook, now – at least some days. I have travel plans when COVID restrictions are lifted and many projects to work on. I am fine, fortunate, and missing that special person in my life.
Guideline 3 –Fostering Resilience, Resourcefulness, and Willingness
I had to learn to be resilient, resourceful, and willing when Daniel was home. Being resilient meant being creative; finding new ways to engage him, using language he could relate to, and adjusting my ways of being to live with who he had become.
I dug deep within myself for the strength to be more patient, to believe in my ability to succeed, to empathize, to lead by example, and to identify possibilities. Prior to the dementia, Daniel and I never argued, but then we were fighting all the time. He didn’t remember the arguments and I learned to release the memories of them – most times.
Finally, I had to be willing to make all the changes now required of me. I took over the finances, I was less than honest because he couldn’t handle the truth, and I gave up my goals and dreams – or at least put them on hold.
When he was at the facility, I had to be resilient as I started a life on my own, had to be resourceful as I made the necessary changes, and willing to move forward despite this entire life transition.
Now, I must be resilient when I am discouraged and find ways to manage the sadness. I must be resourceful as I figure out things for myself and fix small problems. Finally, I have to be willing to do new things, go out on my own, and make independent decisions.
Guideline 4 – Practicing Self-Care
For most of my life, I put others first. However, as Daniel’s memory issues increased, so did my stress level and blood pressure. Something had to change! My health had to become a priority, not only for my well-being but also because I was caring for someone.
Self-care became a must while Daniel was home. I found ways to take time for myself. One strategy I adopted was to better manage certain behaviors and situations. I didn’t let his words hurt me – for the most part. I empathized rather than defended and practiced being compassionate.
I can only imagine how scary and fearful it must have been for him to not remember from one minute to the next, to not know where things were, or to make wrong choices most of the time.
I developed a support system of family and professionals. Because Daniel would not allow for respite care, I took time for my projects while he slept in a chair beside me.
When Daniel was at the memory care facility, my self-care included making sure that I could talk to him as often as possible, seeking guidance on how to move forward, and doing small things for myself.
Now self-care has become a way of being. I can and do put taking care of myself mentally, physically, spiritually and emotionally a top priority.
Guideline 5 – Adopting Effective Habits
Your life today is essentially the sum of your habits. When you learn to transform your habits, you can transform your life. James Clear
I learned that patience was imperative when talking to Daniel. Sometimes, I lost my temper after repeating the same information or answering the same question 15 and 20 times. My habit was to say “I just told you that” or ask “How many times do I have to tell you?” I also tried asking him what he thought the answer might be. But those responses only caused frustration for both of us.
One habit that worked well was doing a jigsaw puzzle together every afternoon. He would complain but once he got involved in the puzzle he was totally absorbed for a couple of hours. His engineering skills clicked in, I guess.
Some changes worked for a while, but then not so much.
When he was at the facility many old habits changed for both us - from dinner time to how we each spent the day. Mainly the habit of doing everything together was gone.
Now, habits and ways of being continue to change: time schedules, what I do each day, and what I watch on television. Very little remains the same.
Guideline 6 – Evaluating Beliefs and perceptions
Beliefs and fears actually alter a person’s perception of reality. Furthermore, the nature of perception influences conscious and unconscious reactions which then impact the situation to create an outcome that is repetitive and predictable.
When Daniel was home, I had to examine my beliefs and perceptions. One small example was about being truthful. My belief was that I should tell the truth; yet, I couldn’t tell him the truth about many things. So, I changed that belief to one that said “sometimes I have to be less than honest, it’s in his best interest.”
Daniel was the head of the house; he took care of finances and fixed computer issues. My perception was that I couldn’t do these things. But I was wrong. Based on how he responded in the past, another perception was that he was often angry, but he really wasn’t, he was just trying to remember and organize his thoughts.
When he was at the facility – my beliefs and perceptions continued to change. My beliefs about living on my own and my role as a wife had to be revised. My perceptions about what I could accomplish were tested.
Today, I am learning to believe in me, to know that I can do many things I didn’t think I could and to believe that I can go on without Daniel. It isn’t what I want, but it is my reality.
Guideline 7 – Accepting Life’s Changes
Acceptance in human psychology is a person's assent to the reality of a situation, recognizing a process or condition without attempting to change it or protest it – being at peace with it.
When Daniel was home, I accepted his limitations and supported him by making sure that his actions caused no problems. I accepted that his brain could only handle one piece of information at a time or one task at a time and I broke everything down into small steps.
We no longer had meaningful conversations and our special jokes and secrets were no longer available to him. Sometimes we had moments of discussion but he quickly forgot them. So much of our old life was gone and so much was missing in the new one. I accepted that and looked at my realistic options; choosing ones that worked best while not dwelling on what used to be.
When he was at the facility, I had to accept their rules and regulations. Because of COVID I had to wait weeks to see him, I wanted to talk to him daily, but that couldn’t be arranged. I had to accept I couldn’t visit him in the hospital and I had to accept that I couldn’t be with him when he died. I had to accept that his health was declining every time I talked with him.
Today, I’d like to say that I am learning to accept this new life – but I’m not – I can acknowledge it’s existence, but I am not at peace with the fact that the man I loved and who was my rock is gone. This was not the life I wanted. I am a work in progress.
Guideline 8 – Examining Choices
Initially, I learned to make choices that included my needs as I kept him home for as long as possible. Some days keeping him home was an easy choice, other days a very difficult one. When this situation began, I was putting all my effort into taking care of him, keeping him busy, and entertaining him. I was soon depressed and overwhelmed. So, I found more and more ways to support myself.
When he was at the facility, I chose to make every effort to connect with him and to let him know I was still here for him. I hope at some level he knew that.
Today my choices are to be the best I can be every day – making the choice to age well.
Guideline 9 – Developing an Inner Coach
Your worst enemy cannot harm you, as much as your own thoughts unguarded. (Buddha)
When Daniel was home, I was self- critical and guilt-ridden about how I responded to situations. At times, I was frustrated, argumentative, and angry.
When he was at the facility, I was very self-critical that I couldn’t do more or have more say in his care.
Now, I am trying to trade in that very stern unforgiving inner-critic for an inner coach - a voice that is more compassionate. This inner-coach supports my efforts, motivates me to keep trying even though I am not completely successful and helps me figure out what is standing in the way of being the person I want to be.
I call it my attitude’s personal trainer. For example, when I feel defeated or think “I can’t do this,” my inner coach asks me what I need and what I can do right now to move on. Still, there is work to be done!!
Guideline 10 – Being Proactive
When Daniel was home, I realized that feeling sorry for myself and seeing myself as a victim was not helpful nor was asking myself “why me?” or “what did I do to deserve this?” The truth was this was not what I wanted; yet, it was our reality.
I tried to keep the words of Joyce Meyer and Walter Anderson in mind. Joyce said
Feeling sorry for ourselves is the most useless waste of energy on the planet. It does absolutely no good. We can’t let our circumstances or what others do or don’t do control us. We can decide to be happy regardless.
Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have—life itself.
When Daniel was at the facility, I did everything possible to advocate for him, to get things to happen for him, and to know what was going on with him.
Today, I practice being proactive: taking charge, acknowledging my mistakes, seeking help when necessary, and setting myself up for success by learning how to best live my new life and manage my feelings.
Whether you live with and care for someone experiencing mental or physical disabilities, my story and the lessons I learned may be of value as you traverse this most difficult path.