The Zen of Caregiving

Does the Caregiver Die First Because It's the Only Way Out?

Yes, I admit I'm depressed this week, and not seeing any way out of my dilemma.  When you are facing years of caregiving with a spouse whose Alzheimer's or other dementia is progressing slowly, who is in otherwise excellent health and destined to live a long life, what other way out is there???

Studies show that the caregiver often dies before the person they are caring for.  Supposedly this is because of the stress they are under on a daily basis.  As loving spouses, children, brothers or sisters, they cannot imagine abandoning their loved one or institutionalizing them.  In addition, family and friends of the caregiver do not comprehend the magnitude of the problem, and do not offer enough support.  

It's not just that.  For me to send Adrian to stay with one of his four sons, for example, feels like a rejection by Adrian.  Why do I need a break from him?  So while I do, and do send him off when I can, I still feel guilty about it.  If I take care of myself, I hurt Adrian's feelings, and thus the ongoing guilt no matter what.

I can't leave because I love him and care about his welfare.  I can't stay because it's killing me.  Thus, the dilemma.

Can meditation and mindfulness really help with this?  I'm seeing my therapist today.  Then I'm going for a walk in one of our beautiful state parks with my sister. 

Caregivers Need Breaks - They Are Rejuvenating!

Adrian went to California to stay with two of his sons for a total of eight days recently.  By the end of that time, I really missed him and was glad to see him come home.  I felt so much more relaxed, rejuvenated, and ready to be a compassionate caregiver.

His sons told me of their struggles to help him figure out how to keep track of his two pairs of glasses so that he would have the right ones when he needed them, and also tell them apart (reading from distance).  They worked on his low-vision reading problems, helping him find large print books.  They reminded him to take his meds.  In other words, they got a taste of what the caregiving was like.

I am fortunate that Adrian has loving, caring sons who can help out now and then.  But caregivers still need breaks, whether family is there or not.  If you have no one to take over for you, consider a home nursing service or temporary stay at a care facility.  Getting a break can make all the difference in the world.

Free NIH Conference on Preventing Alzheimer's & Cognitive Decline

The National Institute of Health is offering a free conference on Preventing Alzheimer's Disease and Cognitive Decline on April 26-28 in Bethesda, Maryland.  If I lived anywhere near there, I'd certainly want to attend.

This conference is for both health professionals and the public: invited experts will present the latest information; attendees will have a chance to ask questions and join discussions; and at the end a panel will prepare and present a consensus statement on the issues.

Some of the questions that will be addressed include:

    1) How can the risk of Alzheimer's disease be reduced?

    2) How can cognitive decline be reduced?

    3) How are the factors that affect cognitive decline and Alzheimer's related?

    4) What are the therapeutic and adverse affects of intervention?

    5) What studies should be done to improve our knowledge of such interventions?

It is easy to register online for this conference.  To find out more about it, see Preventing Alzheimer's Disease and Cognitive Decline. 

Best Depiction of Alzheimer's & A Great Read: STILL ALICE

If you haven't already, you must read Lisa Genova's novel, STILL ALICE, told from the point of view of a Harvard linguistics professor who gets early onset Alzheimer's disease. Genova has a PhD in neuroscience, and has researched thoroughly, but her real talent is making us laugh and cry along with Alice and her family of caregivers.

I found myself caught between identification with Alice and her husband, John.  Alice wants to savor as much life as she is able to before she no longer recognizes the people she loves.  John finds it heartbreaking to watch Alice forget how to do simple things, like turning on the TV.  And he does not want to give up his passion, which is his work. 

I find myself in a similar position.  I do not want to give up my passion, which is my art and the thriving business I've made of it.  I also find it exhausting and heart-breaking to spend my time watching Adrian trying to find his glasses, tie his shoelaces, turn on the TV, etc. I feel that Adrian needs more from me than I can give.

One of the great things about STILL ALICE is that life is still worth living for Alice even after she no longer recognizes her children.  She appreciates them as people:  "the mother" and "the actress."  She finds joy in being rather than doing.  That's something I wish for myself right now.

When a Parent Has Alzheimer's or Other Dementia, Children Have to Grow Up

Most children change roles with their parents at some point in their parents' aging process.  Usually a child who is self-reliant and doing well in life will be ready for the change sooner than a child who continues to struggle to get his own life together. 

Adrian has always been the kind of father his sons can turn to when they need help.  He has taken on that role happily, but now that he is 83 years old, frail, and suffering with dementia, possibly Alzheimer's, he can no longer do it.  No one in their right mind would expect him to.

Having a parent with Alzheimer's or another form of dementia requires that you immediately grow up, if you haven't already.  You will now have to be the strong, protective and caring one. You will no longer ask your parent what he can do for you, but what you can do for him.