Posted in after the diagnosis, care for the caregiver, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness

Bicycle Built for Two:Celebrating Caregivers

It has been a while since I wrote a post focused on caregivers but I had to address the amazing souls walking this earth; the caregiver. Caregivers have been called co-patients because when an individual is diagnosed with an illness they too face many of the same issues as the person with the disease. Those in relationships with the patient experience the same life interruption and on some level there is a death that occurs for them on the emotional and spiritual levels.

Thanks for Facebook I saw this commercial about a couple that warmed my heart, renewed my faith in love and relationships, and showed how caregivers are plugged in on the physical, emotional, and spiritual aspects of the person they’re caring for. The commercial shows the relationship between a husband and wife and the wife has Alzheimer’s disease. The love and compassion this man shows is amazing and serves as the gold standard for love and compassion. It also punctuates the level of devotion he has toward making the end of his wife’s life as enjoyable as possible by plugging in to the things that gave her joy during earlier parts of her life.

Aside from the stress and strain of being a caregiver, I learned from this commercial the importance of paying attention each and every day that I’m with the one I love. We never know when we will have to rely on that information to make the life of the one we love more comfortable and peaceful. The knowledge caregivers acquire over time are not only an archive of their relationship but an exhibition of love, understanding, and matching one’s words and thoughts to one’s actions.

Please watch this video and think about someone in your life (doesn’t have to be a spouse) and a special moment, activity, food, or some other defining experience that may bring him or her joy in his or her time of need. You’d be surprised how the little things have a huge impact!

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Posted in Caregiving

How It Looks Isn’t How It Is

Welcome to Caregiver Friday!!

Every so often Oprah has a show with some big socialite or other well-to-do individual who has been in a domestic violence situation.  Over and over Oprah will say, “You never know what goes on behind the doors of someone’s home…looks can be deceiving.”

It took me to that tickle file in my brain with stories of caregivers who held on taking care of someone at home because if they put their loved one in a nursing home it would “look bad”.  What does look bad mean?  Are you, the caregiver running for Mr. or Ms. Congeniality in the Miss/Mr America pageant?  We’re worried about how we look to others including our own families. 

My mother-in-law took care of my father-in-law at home for over ten years before we convinced her to place him in a nursing home.  At the point we placed him he had deteriorated considerably from small strokes that followed the years after his massive stroke.  He was falling out of bed in the middle of the night (she’s a whole 98 lbs soaking wet and he was a bigger guy) so eventually she began calling the fire department to help get him in bed.  You may have a fireman fantasy, but they don’t like doing these types of calls on a regular basis.

I spoke with another gentleman this week whose mother has Alzheimer’s.  He had built a suite onto his home for his mother and she lived with him for over three years.  The tipping point, as it is for many if not most people, when deciding about a nursing home is the incontinence issue.   The research shows that incontinence is often the straw that breaks the camels back when making the decision to place someone in a nursing home.

Then there’s the issue of trying to be the hero.  A family where the man has Parkinson’s Disease (quite severe at this point) and his wife keeps him at home.  She does have some help getting him dressed the morning and put back in bed in the evening, but he’s a bigger guy and their in their late 60’s early 70’s.  A couple of times she has gotten hurt trying to help him get up when he has fallen out of the wheelchair.  What good does it do either of them to be trapped in this tug-o-war of guilt, shame, and emotional pain.  The decision is difficult, but we have to consider safety, health, and fairness on both sides of the aisle.

Only you know the true story of your caregiver/loved one relationship.  The decisions about care can be quite complex.  I’ve consulted with hundreds of families over the years to come up with a plan that is (according to Stephen Covey of 7 Habits of Highly Effective People) a win-win situation.  Being a martyr, a hero, or a servant takes it’s toll….is it a price you can pay?

Posted in Caregiving

Rationing Valuable Resources

Welcome to Caregiver Friday!!

When you think of valuable resources maybe you think of fossil fuel or precious metals.  Depending on where you live in the world valuable resources may be water or food.  It Western, industrialized nations, the most valuable resource aside from money is time.  Have you ever heard someone ask, “How much is your time worth?”  Our culture thinks about time constantly; so it shouldn’t be a surprise that time for a caregiver/wellness partner is a valuable resource.

One of the iconic books related to Alzheimer’s Disease is The 36-Hour Day.  For many, it has become the guidebook to sanity when it comes to caring for a loved one with dementia or memory loss.  The book has been around a long time and has saved the sanity of many a caregiver. 

When caring for a loved one with a chronic or life-threatening illness there is so much to do that a couple of extra hours wouldn’t be so bad.  In fact, the extra time might even make you feel as if you’re accomplishing a lot of territory.  Unfortunately there are only 24 hours in a day.  It doesn’t matter how much you hope and pray; the day doesn’t get any longer.

Where am I going with all this?  Since time is a valuable commodity, it’s important to treat it in that fashion.  It may require that you become a bit frugal when doling out time to others.  I say this because when push comes to shove, you are in more need of your time than anyone else on the planet.  How can you hold back some time during the day or the week just for you.  Even if you don’t do anything momentous; having that time for yourself  is a life line.

Where’s the catch?  It means you’ll have to familiarize yourself with the word “no”.  This is probably the hardest word in any language for  caregiver, but it’s the equivalent of performing emotional CPR on your soul.  It will give you the space to regroup giving you greater ability to tackle all the challenges that come with being a caregiver/wellness partner.

How have you rationed your valuable resource of time?  I’d love to hear what you’ve done to take some time for yourself and at the same time you can inspire others to do the same.