My Plan for Dementia Care

In my years of ministry, hospice work, and living life, I’ve seen individuals and families go through all kinds of challenges and heartaches, including serious illnesses and aging.  I’ve witnessed people face these challenges with love and grace.  I’ve also seen some situations create tension, stress, and suffering that go on for a very long time. 

Modern medicine can keep us alive, but sometimes beyond a point where there is any real quality of life remaining.  I’ve visited many people in nursing homes in their 90s who have told me they are “ready to go” and don’t want to “just exist.” And I’ve seen many people in wheelchairs placed in front of televisions looking as if any reason to live has long gone, and they are stuck in a stagnant existence.  With dementia, things can get particularly difficult; families ask, “What would Dad want us to do if he was able to tell us?”

I’ve often thought, “I don’t want to go through that myself.  And I don’t my family to go through that.”

Recently I met with a colleague to update my own “Advanced Health Care Directives” and define how I want to be cared for as I age.  She has worked for years with local hospices, hospitals, medical clinics, and retirement homes to help people define what their wishes are for the last years of their life.  When I told her one of my great concerns is what would happen if I should develop serious dementia or Alzheimer’s, she told me about an article in the New York Times that discusses a new option: “One Day Your Mind May Fade. At Least You’ll Have a Plan.” [i] Then she referred me to a new document discussed in the article that would allow me to put my wishes in writing.

You can find the document on the website  Dementia Directive.  It’s very simple.  It defines three stages:

Stage One — Mild: With mild dementia, people may often lose the ability to remember what just happened to them. Routine tasks become difficult, such as cooking. Some tasks can become more dangerous, such as driving.

Stage Two — Moderate: In moderate dementia, communication becomes very limited. People lose the ability to understand what is going on around them. People require daily full-time assistance with dressing and often toileting. They can sometimes become quite confused and agitated and paranoid. Some people appear to be content much of the time.

Stage Three — Severe: In severe dementia, people are no longer able to recognize loved ones and family members. Some people with severe dementia may be calm and serene much of the time, but many go through periods of agitation. They can be awake through the night. They can be angry, disruptive, and yelling. People need 24-hour help with all daily activities, including bathing and assistance with all basic body functions.

For each stage, you can mark which of the three levels of care you want:

Care goals (choose one for each stage)

• To live for as long as I can. I would want full efforts to prolong my life, including efforts to restart my heart if it stops beating.
•  To receive treatments to prolong my life, but if my heart stops beating or I can’t breathe on my own then do not shock my heart to restart it (DNR) and do not place me on a breathing machine. Instead, if either of these happens, allow me to die peacefully. Reason why: if I took such a sudden turn for the worse then my dementia would likely be worse if I survived, and this would not be an acceptable quality of life for me.
• To receive comfort-focused care only. (Including DNR and Do Not Intubate) I would only want medical care to relieve symptoms such as pain, anxiety, or breathlessness. I would not want care to keep me alive longer. It would be important to me to avoid sending me to a hospital or ER, unless that was the only way to keep me more comfortable, because trips to the hospital when someone has dementia can be quite traumatic.

After discussing my wishes with my friend, I took the form to my doctor during my annual checkup.  When I showed him the form, he asked how he could get his own copy.  Then we discussed my wishes.  We agreed that if I was in the first stage – Mild Dementia – I’d choose the second Care Goal: don’t allow CPR or put me on a breathing machine, but if there are some simple treatments that may help me live a bit longer, that may be OK.[ii]  My guess is that if I can still recognize family and friends and putter around enjoying daily tasks, then it may be worth some modest interventions. But for the other two stages, “Moderate” and “Severe,” I marked the third option.  Keep me comfortable, but don’t take dramatic steps to prolong my life.  For example, if I get pneumonia, don’t give me antibiotics – let me die of natural causes.

Each of us may make different choices. But it’s a real gift to have these options spelled out.

Next month we will be with our children and grandchildren. I’ll be sharing this with them, so they know what I want, and I’m adding this form to my records with my physician and attorney.

If you read my blog, you know one of my constant themes is my sense of awe at the miracle of life, and gratitude for all the opportunities and experiences I’ve had. But I don’t want to live “beyond my time,” and I don’t want my family to be emotionally or financially burdened caring for me when I don’t have a life I can appreciate. 

I am grateful for my friend’s counsel and this new directive.

Photograph: “Starry Night Over the Pacific Ocean,” Michael Shainblum

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[i] https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html

[ii] If your heart stops and you are young, medical personnel can often use CPR to revive you. But with people over 80, only 3% of people who receive CPR are ever able to leave the hospital. (https://pubmed.ncbi.nlm.nih.gov/31840239/)