When faced with a serious illness, we are often called upon to evaluate core values and beliefs. What makes life worth living? Is there a quality of life that is unacceptable?
As a family caregiver, you may be asking yourself these questions. Very likely the person you care for is also, although he or she may not be talking about it.
Values and priorities
The key to living well, at any time in life, is to identify what it is that you value most. What is important to you in terms of
your physical well-being?
your mental balance?
your spiritual health?
For people with a serious illness, these questions become a daily concern. The answers will certainly inform decisions about treatment. They will also affect decisions about life support and end-of-life wishes.
Consider these issues with your loved one. And if they have meaning for you in your life also, that may be one of the gifts of giving care.
People struggling with a serious illness often come to measure their days in terms of quality of life rather than its quantity.
Not much stamina
As the disease advances, your loved one may not have much stamina. He or she may not be able to fulfill the roles that were meaningful in the past. Career, friend, parent, spouse. All require energy that may no longer be available.
Still a lot to do
That said, there is still much to live for. Even the dying have wishes and goals. Tasks to complete. Borrowing from the work of noted palliative care physician Ira Byock, these tasks can be described as follows:
Completing one’s worldly affairs
This might include arranging a will or trust to distribute any assets. Your loved one might want to write an advance directive outlining his or her health care wishes at the end of life. There may come a time when it’s appropriate to make closure with community groups and activities outside the ring of intimate friends and relations.
Reviewing one’s life
The person you care for may wish to write a memoir of sorts, telling his or her life story. This can be dictated into a tape recorder as strength and time allow. A friend or possibly even a hospice volunteer can type it up. This is an opportunity to acknowledge and celebrate accomplishments and reflect on challenges. Some people choose to make an “ethical will” describing the lessons they have learned and passing on words of wisdom.
In the course of a lifetime, all of us will have made mistakes. During a life review, your relative may identify things he or she can yet do to make amends. Seeking forgiveness can be very healing. Even if that’s not possible, acknowledging regret can help. So can writing a letter. It doesn’t have to be sent. If the person involved is long gone, writing a letter still helps in the process of forgiving oneself.
Resolving family relationships
A part of making closure with the intimate circle is asking for forgiveness from some and likely extending it to others. When faced with the possibility of never seeing each other again, family members often realize that the relationship is far more important than any resentments from the past.
Self-sufficient as we like to be, the fact is we all need each other. None of us is an island. In the course of living, your loved one has most likely helped others. In the course of life’s end, he or she will most likely need help. An important lesson in the final weeks and days is to learn to be dependent and accept help graciously. This task will be easier if your relative can draw dignity and self-worth from areas other than his or her ability to be self-sufficient. For instance, there is great value and strength in the ability to give and receive love or the ability to share laughter.
As people face the fact of their mortality, they often find solace in spiritual beliefs. They connect with the concept of a Being or Entity larger than themselves. Your loved one may come to an understanding of the fundamental unity of all life. He or she may talk positively about merging with this larger Essence.
Not everyone will go through these steps of letting go. At the least, these passages can remind us that there is more to dying than just the passing of the physical body.
The impact on you
People who care for a terminally ill person often find this letting-go process is personally illuminating. It points out that life is short and brings up important questions about living:
Why wait until I am dying to extend forgiveness?
Why focus on what isn’t working when there’s so much to be grateful for?
Why put off those things that truly have meaning to me?
Coping with a serious illness calls all involved to reexamine their priorities. Family members and the person who is ill often discover that the disease can bring them closer. Their time together can be filled with deep love, growth, grace, and joy, even if the condition is terminal.
What gives your loved one meaning or purpose right now?
Clarifying what your loved one cherishes about life will enable you to focus on those qualities. And if you ever need to make life support decisions, it will help you tremendously to know what he or she values most.
Some questions to discuss:
Which symptoms are the most bothersome? Perhaps they can be managed more effectively.
What favored activities have been limited by the illness? Perhaps adjustments can be made so your loved one can capture the qualities of those activities even if he or she cannot perform them as before.
How have relations with his or her friends and family changed because of the illness? Perhaps talking about it could clear the air for closer interactions.
Worries, fears, concerns
What is distressing to your relative? Is there anything that would be worse than dying? He or she may not feel comfortable discussing these topics with you. Rather than bottle them up inside, however, who would be a good person to speak to about them?
What does your loved one’s spiritual path offer in terms of support? Are there rituals to assist with health challenges? Find out about people you can call upon to help your relative access this support.
What gives life purpose? Your loved one might find it useful to reflect on what has been gratifying so far. Identifying lessons learned, and acknowledge shortcomings, can shed light on meaningful activities.
Wishes and goals
What does your loved one look forward to? Even people who are terminally ill have goals or wishes. Perhaps there is an event he or she is hoping to attend. A wedding? A graduation? Maybe your relative would like to visit an old friend. To wrap up a special project. Spend more time with family.
Daily joys We all have little things that cross our path each day and bring a smile. What simple pleasures does your relative enjoy? The birds at the feeder? A particular type of music? Watching the sunset? These are cues for things you can do to make a challenging day better and a good day great!
Learning more about your relative’s values will help you make decisions about treatments if your loved one cannot speak for him- or herself. At rock bottom, what is the minimum that your loved one would require to make life worth living? Are there circumstances, from your relative’s point of view, that make the quality of life so low that it is worse than dying?
What would your loved one say are the essentials for a good quality of life?
I can't thank Michelle enough for her hard work and dedication in helping my mom and I during this Medicaid process. She was very professional and always available to answer any questions regardless of the day or time.
Michelle has provided my family with a wealth of needed information and services since 2016. In a professional but very caring manner, Aging Well Care Management has provided help with referrals, paperwork, moving and a deep knowledge of her craft. I, too, live far from New York and appreciate the work she has done with my cousin and aunt. I have great confidence in her abilities.
Michelle Spencer’s assessment of my sister’s needs and knowledge of aging well options were instrumental in helping us find a safe, supportive and caring assisted living location.She helped us navigate the placement process quickly and has been there for follow-up actions. This is especially reassuring to us because we do not live nearby.
I have been very happy working with Michelle from Aging Well Care Management and feel fortunate to have found someone who is kind, trustworthy, caring, and accommodating. This is important because I live 500 miles from my 90 year old mother, who also appreciates her weekly visits. I certainly recommend Michelle and Aging Well Care Management.
I have recently signed on as an Aging Well Care Management client. I am working with Michelle on my mother's behalf on the first task and thus far I am satisfied. I will be able to provide updated feedback after this task is complete.Thank you Michelle.
Great experience with Michelle. She was very informative and shared lots of good information. It take a load off my mind to know that I have Aging Well Care to turn to when I need assistance with the care of my sister in law who has Alzheimer’s. I would recommend them highly.
Michelle has been wonderful as a long-distance liaison for me as I have helped my parents transition in/out of rehab and assisted living facilities over the past year. Knowing I can count on her from afar to help when needed with scheduling appointments, following up with facilities, and transportation has been a relief and much weight off my shoulders. She is experienced and can help you navigate/advocate. Even if you live locally she can provide welcome relief and support when caring for others. I highly recommend Aging Well Care Management.
I have known Michelle Spencer for two years she has been a well liked and available social worker to many people in Village Park residential apartments I employed Michelle last year and this year to assist me with editing our handbook also minutes of our residential Council Michelle has also also given me advice on medical billing I have found Michelle to be professional very knowledge flexible as she can be in her busy schedule she answers my text quickly and projects her schedule so that I can easily arrange my date I enjoy working with Michelle because she is professional easy in her conversations and willing to teach I would certainly recommend Michelle to any person or organization that needs casework or professional guidance
Working for Aging Well Care Management, LLC has been an absolute pleasure. Michelle goes above and beyond for her client’s & their families. She expects nothing less than the best from her staff. I look forward to watching this company grow & being a part of it all.
Michelle has been fantastic. Offering words of encouragement and giving useful suggestions. Our family member can be more than challenging and she has been very good at helping us through difficult times.
Thank you for your care, concern and assistance with my disabled relative. Your experience and support were much appreciated as we navigated through the variety of challenges that came up. He enjoyed your visits.
Recently our family went through a life changing event with my aging father. After unexpected time in the hospital, it was clear that dad needed full time care outside of his home. Faced with the daunting task of finding the right place for dad we retained Michelle Spencer to help us through the process. She was a huge help navigating medicaid, facility selection and all the issues we were facing for the first time. I would highly recommend Michelle to anyone that is dealing with similar decisions.