An Open Letter to Dementia Caregivers

“A million tomorrows shall all pass away, ‘ere I forget all the joy that is mine, today.”
(From Today by John Denver)

For reasons I’ll leave for others to explain, we are witnessing an increase in the number of people that do forget all the joy that was theirs. My circle of family and friends struggling to care for someone with dementia has been steadily growing over the past few years. Last week the challenges of dementia got personal. I helped my sister-in-law move my brother into a memory care group home.

Virginia and I remember quite a few days of sunshine, laughter, travel, and adventure with Ross. After we left him in the group home we swapped memories of earlier, easier days with him. I recounted events from our childhoods. She told me stories of the millions of moments they’ve shared since meeting in college. Today he can’t remember what he said two minutes ago.

Dementia Challenges for Caregivers Increase

The Baby Boomer generation has dominated the social scene since we started showing up in droves in the mid-1940’s. Today society is adjusting to accommodate the wave of aging Boomers with dementia. We are witnessing more research, more  variety in management of the symptoms, and more creative ways to provide the care needed. Memory Lane, where my brother now resides, is a six-private-room group home prepared to do what my sister-in-law no longer can – keep up with my brother’s 24/7 needs.

Though it is clear he needs more care than she can continue to provide, it was none-the-less heart-wrenching to watch her let him go to the care of strangers. True, they are compassionate professionals. Equally true, her own health has suffered from the strain of tending to his needs full time.  In fact, the final factor that led to this transition is the reality she needs some surgery and recuperation time herself.

When Caring Isn’t Enough

Memory Lane Care Facility

No one familiar with the situation has any doubts this was what needed to happen. That didn’t make moving him one lick easier. It appears that within a day of introducing him to his new home, he is adjusting well, but the transition is hard to watch. Dementia diminishes a person layer by layer. Caretakers watch their loved one gradually fade away, sacrificing themselves in hundreds of little ways day by day while the one with dementia grows increasingly dependent on them.

So I want to thank everyone who provides care to anyone with dementia. You are a special kind of hero in my book and deserve all help and encouragement you can get. You remember their better days while they don’t remember much of anything anymore.

Living with someone with dementia means you learn how to respond to the often puzzling and at times frightening changes of behavior brought on by the mental deterioration. Patiently you let them tell you the same story over and over and over – a dozen times in a row. Equally patiently you repeatedly answer the same questions, knowing they aren’t going to understand or remember the answer for even five minutes.

The Toll on Family

Somehow you manage to cajole them into getting dressed and tending to basic hygiene routines. With subtle guidance you convince them to eat the food set before them. When necessary you manage to guide them where they need to go –to the doctor or out for a walk. One by one you drop the activities you used to enjoy. Public places pose too many distractions. The confusion overwhelms them and an awkward scene is likely to ensue. A movie plot is too complex to follow. All day – every day, you keep adjusting the routine to maximize safety and cooperation and minimize the chances they’ll become agitated and belligerent in their frustration and confusion. All the while you realize the situation is not going to get better – only more challenging.

You sacrifice sleep because your loved one’s sleep patterns are all out of kilter and there is a very real risk he or she might walk out the door and forget how to come home. When you find your neighbor’s mail on your counter, you return it, hoping your neighbor understands. Your own activities that once gave you a meaningful outlet have gone by the wayside. There’s no time and no energy to enjoy them. You can’t leave your loved home alone. When you tried taking him or her with you, you learned others don’t understand the temper tantrums and unacceptable behavior.

Bringing people in helps a little – sometimes – if your loved one lets that person cover for you for a few hours. But then your loved one might become hysterical and refuse to cooperate with anyone else but you.

Caring for the Caregivers

Dear caregiver, you have given and given and given some more. I hope you are finding real help and I hope you believe that it is OK to let someone else take over. You are not giving up and you are not giving in. Rather, you are wisely acknowledging that your loved one’s needs exceed your capacity to give. I hope you can let go of hurting yourself while tending to someone whose needs will only increase over time. I pray you can refrain from judging yourself for not being able to do the impossible.

Dear caregiver, thank you for what you have done and are doing. Thank you, and may you be at peace with yourself when you can no keep doing this. Your inability to meet all the needs of someone with dementia is hardly a character flaw or indication of any lack of love. You have done what you know how to do. Thank you for it. Now, please, take very good care of yourself. We need more kind, compassionate, giving people like you in the world.