The Zen of Caregiving

The Straw That Breaks The Caregiver's Back

We caregivers are often at the limits of what we can handle, and when we are asked to take care of "one more thing" it becomes the straw that breaks our backs. I have all I can manage taking care of my husband, who has dementia as well as hearing problems, vision problems, balance problems, and two bad shoulders.  I am also a professional artist, and managing my art business is another full-time job.

So last week when I was asked to take on one more thing, stress levels went over the top.  In the beginning my adrenaline kicked in and I was operating at warp speed the first two days.  Then the physical and emotional exhaustion set in.

Forget about making art.  I couldn't keep up.

Forget about my morning meditation.  I couldn't stay focused.

Things have calmed down a bit, and I'm getting a much-needed respite this week since Adrian will be visiting with two of his sons.  By the end of the week I know I'll be glad to see him come home.

But for now, I look forward to the breathing space.

The Caregiver Dies First

I just heard of another case where the caregiver died first.  This was a wife who was taking care of her husband who had Alzheimer's.  Tragically, this is all too common.  The stress of caregiving eventually wears out the caregiver, who is physically exhausted, and he or she dies before the loved one being cared for.

I am trying very hard to be more patient, loving and kind in the face of Adrian's disability.  I meditate every morning and try to see the challenges we face as opportunities to practice mindfulness and living in the present moment.

However, this doesn't mean I don't have to set boundaries, maintain my own health, and ask for assistance from family members and friends.  I cannot do this alone.  Ruining my own health and sanity would not help Adrian, either. 

Caregivers, make sure you are getting the help you need and taking care of yourselves!

Hospital Stay Likely to Worsen Dementia/Alzheimer's Symptoms

I vividly remember my father's first hospital stay after we'd brought him to Ithaca to live near us in an assisted living facility.  Dad had been managing very well in spite of a severe short-term memory loss.  He was basically "on his own" at the facility where they provided him with 3 meals a day and a safe environment to wander around chatting with people, playing pool, or watching sports on TV. 

One winter a bad flu virus made the rounds, and when we could not lift my father off the floor where he'd fallen, Adrian and I called 911 and had him taken to the hospital. That was the beginning of the end.  My father became paranoid and unmanageable in the hospital, and developed new symptoms that required him to move to a nursing home when he left.

Now, years later, I see that a hospital visit is likely to worsen the paranoia and confusion of anyone with dementia or Alzheimer's.  Adrian was in the hospital for 2 days recently, and became frightened that "They will put me away if I say the wrong thing."  He even told his regular doctor that they were keeping him institutionalized against his will. 

One morning the nurse called me because Adrian would not take his pills.  She reviewed what they were, and then put him on the phone so I could tell him it was OK for him to take them.  Only then would he do so.

Luckily, Adrian's regular doctor realized he would be better off recuperating at home, and I rescued him that afternoon.  He still considered his hospital stay an awful ordeal, but was gradually able to see things in a more realistic perspective.

The Life of a Caregiver: Making Guilt Your Friend

I haven't posted in a while thanks to a trip to Florida (good) and a hospital stay for Adrian (bad).  But I had a great conversation with another caregiver who told me she "always feels guilty."  The point is, no matter how much we do, it will never be enough.  Therefore, guilt is a constant companion.

This morning, for example, I woke up in a good mood in spite of the fact that Adrian had kept me awake with his coughing.  He has a bad cold, so after I got up, I found some vapo-rub and rubbed it on his chest.  Then I got him his meds and some water.  Later he asked if I'd bought eggs, and I said, "Yes, would you like me to make you some for breakfast?" 

Breakfast was fine.  Then I cleaned up the dishes and went out to my studio.  But I made the mistake of leaving the door open.  Adrian came out to talk to me and said he felt terrible.

"What are your symptoms?" I asked.

"I feel like I'm in prison."

And who might the prison guard be, I wondered. 

Well, it went downhill from there as he wanted me to call the doctor's office about his current symptoms, plus make appointments with the ophthalmologist and the optometrist even though he's just been a month ago and they say nothing more can be done for him. 

At this point my good mood was gone and my patience thin.  I guess it sounded in my voice.

"Do you resent me?" Adrian asked.

I didn't say it, but of course I do at times.  Not all the time, but sometimes. Guilt, guilt, and more guilt.

The trick, I think, is to make friends with the guilt, to accept it as a natural companion to the caregiving life. If guilt is my friend, maybe I can take better care of myself and accept the fact that doing so will make me feel guilty.  But taking care of myself will also help me take better care of Adrian, so it's worth a little guilt. 

I take a deep breath . . . come to me, guilt . . . ahhhhhh.