What to Do When the End Is Near
by: Kathi Koll on
The third in our nine-part guide for new caregivers.
One of the most heart-wrenching aspects of being a caregiver is deciding how to let go of your loved one.
When is the right time to move a patient into hospice, which can provide loving and professional support while someone is dying? When would residential placement be helpful, or would dying at home be preferable? Could palliative care, which helps with pain management, be of use? How do you approach making certain the will and any other legal issues are properly addressed? Should preparations be made in advance for a funeral?
The decisions and emotions can be confusing, and the uncertainty adds to the challenges. When Kathi Koll's husband, Don, suffered a catastrophic stroke, he was initially given 24 hours to live, but he actually lived for 6-1/2 years while paralyzed from the neck down.
“You experience anticipatory grief when you know someone is going to pass away, but you don't know when,” Koll said. “I always knew my husband wasn't going to live long, but the uncertainty is like living in limbo. Every night when I went to sleep I worried he wouldn’t be with me by morning. Every morning when I awakened I worried he wouldn’t be with me by nightfall.”
Taking care of the legal issues, such as a will and the eventual funeral arrangements, ended up being one part of the confusing and painful end-of-life equation for the couple but not the most challenging aspect, which stemmed from making decisions that no one would want to make. During those years, Don’s doctor ask if he wanted to be saved in a life threatening situation, andDon, who was a quadriplegic and needed a respirator to live, repeatedly answered, “Yes.”
“It was Don’s life, and it was important the decision was his,” Kathi said. Eventually Don had a catastrophic event so that he was no longer capable of
being aware or truly living. “I didn’t know what that meant until I lived it”
, Kathi said.
At that point a decade ago, Koll, who later started the Kathi Koll Foundation to help other family caregivers, knew nothing of hospice care, which she later learned might have helped support her as she made agonizing decisions for her husband. Instead, a friend helped her think through the various issues and provided the emotional support she needed.
“You need somebody to lean on,” Koll said. “It's really hard to make those kinds of decisions when you're by yourself or anytime.”
So what can you do during this incredibly stressful time to make your way down a path that you never wanted to travel? Here are some thoughts that might help you find your way:
1)Talk to your loved one
If possible, take the time to talk to your loved one about as much as you can ahead of time so you know what s/he would want in various medical scenarios. Talk about legal issues with an attorney, perhaps visit a funeral home together, discuss funeral arrangements, and consider hospice care. The more you know about his or her wants, the easier it will be to make decisions later on.
Sometimes, it's impossible to talk to your loved one due to dementia or another difficulty. If this is the case, you may have to address the above issues
solo or with a friend or other family member. There is no wrong answer. Remember – you are doing the best you can.
2)Take care of business
Legal arrangements like a will can take time to address, so it's worth getting past those hurdles, so they no longer are worries when the really emotionally
wrenching times come. If a power of attorney is needed so that you can make decisions for your loved one, acquire one. A will and any trusts or other
legal documents should be obtained. An Advance Healthcare Directive can provide guidance in a medical crisis, so take the time to create one. If a
lawyer is too expensive, some documents can be created more cheaply online.
3)Adding to the Team
If your loved one is facing a chronic or deteriorating prognosis, his or her condition will change over time, and various support is possible throughout these stages. For example, palliative care, which provides comfort in varying ways ranging from medicine to therapy during an illness, may be helpful throughout both the illness and the approach to death. It can even be combined with hospice care, which is a support system when a patient ends the search for a cure and instead transitions toward death.
If you like to read, consider the book “Being Mortal,” which offers comforting advice on helping people have a good end to their lives.
4)Time for Hospice?
The decision to forego treatment and instead accept comfort care for an approaching death is a big one. Generally, the medical situation is the first consideration. Has an illness progressed to the final stages? Are treatments no longer working? Are normal and pleasurable activities, such as eating and talking, becoming increasingly difficult or impossible? What do the doctors say about the situation? How do you and your loved one feel about the possibility of ending the fight and refocusing on hospice and end-of-life care?
Are there last things that the patient would like to do whether simple or more complex? Perhaps a grandparent has always wanted to see the Grand Canyon or maybe an ill spouse would like to visit a beloved beach one last time or have some final meals at favored restaurants? Try to include some of these things while taking time to treasure your last moments with your loved one. Know that just the fact you are there is the best gift you could ever give your loved one.
No matter how well you plan, letting go of a beloved person in your life will likely be one of your most painful life experiences.
A last piece of advice and maybe the most important during this time: be gentle with yourself.
A last piece of advice is that you try to have compassion and patience with yourself.