At the end of your life, you will never regret not having passed one more test, not winning one more verdict or not closing one more deal. You will regret time not spent with a husband, a friend, a child, or a parent.–Barbara Bush
This quote calls to mind why we shouldn’t shy away from thinking about end of life. Barbara Bush reminds us of what will matter as we face our final moments. In our time working with clients handling their end of life care, we have learned a lot about what people regret. They regret what they did not do…opportunities they didn’t embrace, relationships they didn’t mend, time they didn’t spend with loved ones. No matter what stage of life we’re in now, we can benefit from thinking with an end-of-life mindset. How do we want our lives to look when we reflect back?
This also becomes quite clear as we work with the adult children of dying loved ones. Sometimes they’re so caught up trying to provide the care their parents need, they become solely focused on tasks. They may even get swept up into fights with other family members. Over and over, we hear from people that this is one of the biggest benefits to getting home care and care management assistance. They can go back to “being the family member” again. When you have limited time left together, you don’t want it to be focused on practicalities. You want to spend that time holding Mom’s hand, listening to her stories.
In the end, it’s not the years in your life that count. It’s the life in your years.–Abraham Lincoln
This quote embodies “quality of life”, a phrase you hear a lot in end of life care. Modern medicine allows us to live longer lives. But, our advocates always open up a conversation about what it is you want out of those years.
We help clients and families ask questions about their prognosis and expected outcomes vs trade offs of treatments. Many elderly clients find themselves spending most of their time in doctors’ offices. They get tests for things when the potential treatment no longer makes sense for them. At other times, in our concern to keep older loved ones safe, we forget about their choice and desires. Many of us wouldn’t want to give up certain things just because of some risks.
It’s not what you have at the end of life, it’s what you leave behind that matters.–Stedman Graham
This might call to mind inheritance of possessions i.e. what you will physically leave behind. But, this really is about the intangibles, in other words the legacy you leave behind. How will people remember you? What values did you impart or impact did you have on others? This does not have to mean you are Bill Gates or Oprah, giving millions to charity. It could mean spending more time with family, reaching out to friends, helping a neighbor in need.
At the end of life, in particular, many clients seek to tend to unfinished business. This could be a simple apology or reconnecting with someone, or a more complex process of mending a long-estranged relationship. When our care managers provide end of life care this is one aspect of the comprehensive way we approach it. Often, we help clients examine these things and find closure where possible. Sometimes that also means coming to terms with relationships that cannot be fixed and dealing with the repercussions.
Our worst fear isn’t the end of life but the end of memories.–Tom Rachman
When you really think about death, this quote captures what it is we actually fear. For most, it is not the physical end but an existential crisis. This ties in with the previous quote. What memories will people have of us? Will we live on in what we left behind?
It also reminds us to make and cherish memories. A part of end of life care is tending to these psychosocial needs. We encourage families to spend time together and reminisce. Useful tools include photo albums and memory books (there are some nice ones that have prompts such as this one or this). Some families record their loved one’s story on audio or video. Or, they help write down life stories or even put together a memoir.
This also gets at the heart of the fear surrounding Alzheimer’s and other dementias. Losing one’s memories is a painful loss. Family members face grief while their loved one is still alive. It is a progressive loss, made more difficult by the complexities you might face in providing care. Don’t face this alone. Reach out for help. Help is available, from online caregiver communities, support groups, professional organizations, care coaches and counselors.
I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle and end.–Gilda Radner
Gilda’s wisdom probably resonates with most of us with any life experience. We cannot control or imagine how life will go, and the same holds true for the end of life. This unpredictability is, in fact, the beauty of life. But, it can be a struggle too. Things won’t always go the way we want. Life is messy. People are messy. Families are messy. And, naturally, caregiving is messy.
We help many families come to terms with the unpredictability of it all, and to find control where they can. Often, individuals and their families are surprised by the gifts they receive in the end of life care process. As Gilda shares, it is not always the neat ending we imagined. But, sometimes, it is a new and even more interesting story.
In the beginning of life, when we are infants, we need others to survive. And at the end of life, we need others to survive. But here’s the secret, in between, we need others as well.–Morrie Schwartz
We couldn’t agree more. Sometimes we see too great an emphasis on independence in our society. The reality is we don’t exist as independent entities. We need others. There is nothing wrong with that. This value on independence, while it can be a strength, often creates more angst with the process of aging. Though we always need others, it becomes clearer as we near the end of life. When we think the most important value is independence, this creates internal conflict. Our language around aging reflects this. We neglect to take into account all the ways we need others throughout life and all the ways we are needed, even as we near the end of life.
You can read more about difficulties in how we talk to our aging loved ones and ways to improve.
Culturally, now, we’re really tight around death, and as a result I think people miss out on a lot of the beautiful aspects of the end of life process that can be very helpful for the grieving process, that can be a really beautiful part of transition of life that we don’t get to experience because it’s not in the conversation.–Chrysta Bell
With greater openness, we can grow. Being involved in the end of life process and caregiving more broadly can help us build relationships, reconnect, and grieve more naturally. We may be able to deepen our relationships with family members and ourselves. Most caregivers cite personal growth as a benefit of caregiving. One example we often see is that older husbands who provide eldercare discover nurturing aspects of their personality. Some of them grew up in a time where they weren’t very involved in child rearing or other caregiving duties. Many of them treasure their caregiving time and embrace the role. Of course, this isn’t just true for men.
If we continue to avoid talking about end of life, we may deny ourselves the opportunity to be involved in end of life care. It can close off the chance to talk about our feelings and process what is happening, for both the person who is dying and those around them.
Have a conversation with your family about your end-of-life wishes while you are healthy. No one wants to have that discussion… but if you do, you’ll be giving your loved ones a tremendous gift, since they won’t have to guess what your wishes would have been, and it takes the onus of responsibility off of them.–Jodi Picoult
This is also echoed by an uncredited quote, “End of life decisions should not be made at the end of life.” Do not wait until the crisis, when it may be too late for you to do planning or express your wishes. You leave your family members in a tough spot when you do that. On the other hand, you give them a gift when you plan ahead and share your wishes for end of life care.
As a young social worker, I had an experience with this that sticks with me to this day. A resident’s daughter was insisting on extreme measures for her Dad, who was in late-stage Alzheimer’s with numerous health issues. Our staff felt this was unreasonable and even cruel to the resident. I sat down to talk with her. She tearfully explained that she understood the situation. But, her Dad had always refused to talk about anything personal. He was a real fighter and she didn’t feel confident about what he would want. She went on to explain that she took care of her aunt and made many of the decisions we were now advising her to make for her Dad. However, the key difference was that her aunt was clear about her wishes. If only she’d been able to talk with her Dad (or if he’d put things in writing at least), she wouldn’t have faced this turmoil.
Having the choice at the end of my life has become incredibly important. It has given me a sense of peace during a time that otherwise would be dominated by fear, uncertainty and pain.–Brittany Maynard
Choice is vital in end of life care. Fortunately, our laws provide us with agency over our healthcare decisions. And, they make provisions so we can have someone make them on our behalf when we can’t. Knowing we’ve done this advance care planning can reduce fear and uncertainty. A sense of choice gives peace.
Read more about some of the key documents in advance care planning. Contact us if you’d like to discuss getting your plans in place and starting the conversations.
You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.-Cicely Saunders
This quote from a pioneer in the hospice movement illustrates why palliative care and hospice are so important to end of life care. Many people fear dying in pain and want a peaceful death. This is quite achievable with the resources available. But, too many people don’t access palliative care or hospice until the last days of life, if at all. They should come in much sooner, so they can assist you in living, not just the actual dying process. When I worked at hospice, it was a common phenomena for people to be admitted and die within a few days. We could have been working with them for many months, being sure they weren’t in pain, had what they needed, and addressing their (and their family’s) psychosocial needs.
The end of life deserves as much beauty, care and respect as the beginning.– Anonymous
This quote sums up what this piece is about and what we hope you take away about end of life care.
