It was a sad and painful experience for everyone. The world continued to shrink around them. Both of my parents endured a significant loss of independence in their final months of life. To complicate matters, there were no plans in place so we were constantly in a reactive mode. Every family should have the difficult but necessary conversation about what happens should their parents lose their ability to live in their own home.
The On the Loss of My Parents series is a tribute to my parents, Bruce Alger (1918-2011) and Vi Alger (1919-2010). It is the origin and foundation for my project, “Aging in the Second Half of Life.” On the Loss of My Parents is also an example of how transformative writing can cultivate healing, self-renewal, and understanding that is good for self and others at the same time.
If we live long enough, we will all lose our independence
No one wants to lose their independence. If we live long enough, however, that is precisely what will happen.
Though it is a little dated, the Clarity 2007 Aging In Place In America research report shed some light on age-related fears held by seniors and their children:
- 26% of the seniors surveyed rated loss of independence as their greatest fear;
- 13% of the seniors surveyed rated moving into a nursing home as their greatest fear;
- 89% of the seniors surveyed want to age in place, or grow old without leaving home;
- 52% of the seniors surveyed worry about being able to age in place;
- 82% of the boomers surveyed worry that their parents will be mistreated in a nursing home;
- The third article in this series is On the Loss of My Parents: 3 – In the Midst of Death
Losing our independence is a frightening and heart-wrenching experience. In helping my parents transition from independence through various forms of assisted-living and finally into dependence gives the statistics above a sense of felt-meaning.
Both of my parents were fiercely independent people, and I suspect this is not uncommon. Advanced aging, however, will turn even the fiercest independence into a question mark. My parents journey from independence into dependence was a difficult one, but it is journey that we can all learn from.
Aging gradually erodes our independence. If we live long enough, each one of us will require some form of assisted living. When the effects of advanced aging become overwhelming, we have no choice but to submit to some form of assisted-living. The basic aim of assisted-living is to help preserve as much of our independence as possible for as long as possible.
The bad news is this – if we live long enough, aging will eventually force us to become dependent on others for our survival.
The transition into assisted-living is psychologically difficult. I saw the confidence of my parents gradually turn into subtle feelings of fear, anger, guilt and confusion. The loss of independence is feared more than death itself.
How do we best prepare for a loss of independence?
Can I have some assistance please?
Assisted living addresses a partial loss of independence. It does not always mean leaving home and moving into an institution. It can also take the form in in-home support.
Assisted living requires physical, mental, emotional, and spiritual support.
Assistance means there is some degree of necessary help with the activities of daily living (ADLs). This can be in-home assistance for an hour a day to living fulltime in an assisted-living facility (e.g. – retirement home).
In home assistance for my parents over the final ten years of their lives. My mother’s vision was only 30% of normal due to macular-degeneration, and she also had significant issues with arthritis and fibromyalgia. In the early years, my father was able to handle most of the requirements of daily living. As long as he was healthy enough, living at home with modest assistance was no problem.
Not surprisingly, the nature of assistance gradually increased as my father’s physical and mental health deteriorated. Since my father was able to provide significant levels of support for my mother, they were able to stay in home.
The preservation of their independence had become a house of cards, and eventually it fell.
In addition to regular support from the local CCAC (Community Care Access Centre), other forms of assistance were established for my parents. Assistive devices were installed in their home to facilitate a number of daily activities of living and to provide an extra level of safety, most notably in the bathroom.
The family doctor or nurse practitioner began visiting the house to do regular medical check-ups. They would also assess whether or not it was safe for them to continue living in home. Their visits, while always beneficial, eventually became a source of significant anxiety for my parents.
Due to the complexity and variability of their medication regime, the pharmacist started to make regular visits to the home to organize their medications and monitor whether or not they were being taken properly.
My dad experienced bouts of congestive heart failure that required the use of oxygen in home. My mother began experiencing increased difficulty with infections, specifically pneumonia. Their health was clearly destabilizing, and so was their independence.
“Brian, I never thought it would happen like this”
I can recall my dad saying that he never thought it (his own end) would unfold the way it did. And it was an honest statement. He never thought his life would end the way it did.
I wonder if it is possible to live too long?
My sister and I spent increasing amounts of time in home with my parents in order to provide them with greater levels of care and assistance. It was exhausting but rewarding work. I learned what it meant to be a member of the sandwich generation.
Eventually, the requirements for in-home assistance become unrealistic.
Regardless of how much time and resources are put into the home, unless there is full-time support, safety becomes extremely problematic. I can recall issues with double-dosing on medications. And another instance of the stove inadvertently being left on and quite nearly causing a house fire that may have taken their lives.
Most of all, I can recall the look of sadness on my parents’ faces after they had realized how fragile their life at home had become.
When we lose the ability to perform the instrumental activities of daily living (i.e. regular activities performed during the course of a day, including managing finances, basic self-care, travel within community, shopping, meal preparation, housekeeping, use of telephone, and taking medications correctly) we begin to move further into dependency.
How can we learn to accept our own increasing dependency with grace and compassion?
The loss of independence that occurs in the transition from independent living to the various levels of assisted living requires significant physical, mental, emotional, and spiritual preparation. This is a perfect example to illustrate the old adage, “Easier said than done.”
One day the crisis that would force them out of their home suddenly emerged. My father’s hip gave out, and he could no longer walk. In that moment, they both lost the ability to live at home. Intensifying the anxiety surrounding this situation was the fact that no planning or provisions had been made in the event they had to leave their home.
Leaving home was too painful for them to consider. Leaving home was now forced upon them.
Making decisions we don’t want to make
When we lose our independence, we lose familiar and trusted ways of participating and belonging.
The nursing home is symbolic of our loss of independence due to frailty. The stark reality is that it is likely to be the place we go to await death. When we enter into a nursing home, we enter into the final chapter of our life.
A friend of mine refers to nursing homes as “human warehousing.” It is a sad statement, but one that resonates to some extent with my own experiences. I found that the workers in a nursing home are dedicated people that desire to provide a helpful service to seniors. However, they are typically overworked, under-paid, and stretched to the point that they can barely provide basic services.
Let’s be honest, a nursing home is not really a home.
My parents had every intention of dying in their own home. The reality is that this is not always possible.
I fear losing my own independence, but as much as possible I would want that experience to happen as much as possible on my own terms. This means that I must make some decisions ahead of time, put some plans in place, and have a conversation with my loved ones about it. It’s not an easy or pleasant thing to consider.
Without plans, the children (or caregivers) of elderly parents will find themselves in the unenviable position of making critical life-course decisions on their behalf. If they make the wrong decisions, their parent will suffer and they will carry the guilt of that decision for the rest of their lives.
My parents had entered a grey zone. Doctors were telling us that they could no longer live safely at home with any amount of assistance. At the same time, we did not know where they could go. They were, in manner of speaking, in the twilight zone.
At this point, Power of Attorney was invoked and I found myself in the unenviable position of making decisions I did not want to make.
Taking care of those you love can involve making extremely difficult decisions that have no clear answer. Sometimes, no matter how hard we try to make the right decision, we feel guilt and sadness over the decisions we make. It is painful for the elderly parents, and it is painful for the decision-makers.
All families should openly embrace an honest discussion about a transition into assisted living. Quite often, as was the case with my parents, assisted living begins with the provision of assistance in the home, but eventually intensifies to the point where living in home is no longer feasible. If plans are not put in place in advance and are not a shared process, then heart-wrenching decisions will have to be made by primary caregivers in the heat of the moment.
Making critical decisions while under extreme emotional duress is not ideal. In addition, access to the nursing home system requires planning several years in advance in order for people to have the best chance to live out their final years on their own terms. The range of possibilities we have to choose from may not be ideal, but involvement in difficult decisions is significantly better than losing control of one’s course of life.
We eventually managed a placement for both mom and dad to be in the IOOF Seniors Home in Barrie Ontario. Our goal was simple, and that was to try and find a way that mom and dad could spend their finals days together in the same facility.
I found it repulsive that the system of nursing home placements in Ontario does not embrace provisions for keeping husbands and wives together in the final stages of life. There is a cold, bureaucratic sensibility in the system. In order to keep them together we had to place dad in a private room. To make this a reality, my sister and I had to undertake to emotionally difficult responsibility of packing up and selling our parents’ home.
Of course, we were not just selling a house, we were selling their home, a way of life, and a sanctuary of cherished experience and memories.
I experienced a kind of amputation of the soul in this process, and I can’t imagine the depth of loss my parents felt. Though their mental health was in significant decline at this point, they possessed enough awareness to understand their basic situation. There was a sense of deep connection and belonging with their home that was now coming to an abrupt and permanent end.
This was indeed a point of no return in their lives, and a clear transition into the final period of life. As we packed their belongings, the memories imbued in them often visited and touched our emotions. Yet in their absence, their material possessions somehow lacked the vibrancy they once had.
There was a palpable and profound feeling of sorrow in the home. It seemed to feel the loss as well and was shedding tears of absence. The reality is that we will all die and lose our material possessions, but this does not make the loss any less sorrowful and painful.
Even homes can cry when an era is brought to a close.
It can happen to any of us
When we lose independence due to the natural course of aging, we know in our hearts that it is a permanent loss. My parents handled the transition with dignity, even in the midst of the agonizing angst and grief they felt. Saying goodbye to the family home is a profoundly difficult experience.
Helping seniors to experience the highest possible quality of life in their final years is a reflection of our own humanity. Assisted-living and aging in place need to address the physical, mental, and spiritual dimensions of living old.
The experience of helping my parents from independence into assisted living through to dependence changed me at a deep level. I stand in the world a different and hopefully better person because of the experience. I have learned things that have changed my own life. My priorities are different now. Most especially, I see people differently now.
What are your experiences? I would enjoy reading your ideas and insights.