Monday, May 2, 2011

Caring for the Caregiver

When I became more involved in Robert’s care, I didn’t consider myself a “caregiver.” I thought that term was reserved for people making room in their home to care for their elderly parents. Boy is that wrong!

One out of every five households are involved in caring for someone aged 18 years or older (and those stats don’t even include the parents caring for a sick or disabled child).

Caregiving comes in all shapes and sizes. It can be a mom caring for her terminally ill daughter who spends weeks in and out of hospitals. It is a woman caring for her husband in their home after thirty years of being soul mates. It is a son arranging care for his father who lives three hours away so his dad can continue to live in his “forever” home. It is a wife and children blindsided by their patriarch’s cancer and ensuring his comfort to the end. It is a daughter and her husband and children making room in their home to provide loving care for her mom who is living with Dementia. It is a son keeping track of medications and doctor appointments after his mom suffered a stroke so she can live independently. It is a sister advocating for her disabled brother so he can live a happy and fulfilled life even with his deteriorating cognitive and physical abilities.

Even though Robert doesn’t live with me, there’s still a lot to do to take care of him (aside from the obvious of finding him a home and a day program): making sure he is well stocked with his personal supplies (7-Up, shaving crème, toothpaste, razors – yes, that is in order of priority!); trying out different protective briefs so he can stay dry at night and during the day; keeping a detailed log of personal expenses (I am his “Representative Payee” and need to report expenditures to Social Security); working with him on behavior issues (repeat after me: no standing on the bus while it’s moving even if it is to close a window); teaching New Home to communicate; dealing with seizures and falls and staples and hospital visits; taking him to doctor appointments; shopping with him for presents for the nieces and nephews; even renewing his ID at the always enjoyable DMV.

Playing cards with Robert sometimes even gets put on the “to do” list instead of something I’m doing for fun. (Don’t judge. I’m just being honest.)

Caregivers tend to neglect their own health with one study even showing that women caregivers are six times as likely to suffer from depression or anxiety than their non-caregiving counterparts.

Support groups are a wonderful resource for caregivers. Because caregiving can be an exercise in isolation, the internet can be a valuable tool. An online caregiving community which has proved to be very helpful and supportive to me and several others can be found at Other helpful resources are Today’s Caregiver at, The Family Caregiver Alliance ( as well as the National Family Caregivers Association (

Caring for yourself is as important as caring for your loved one. If you need more assistance than what is briefly mentioned here, please let me know in the comment section and I’ll see what other resources may be of help to you.

Be good to yourself. You deserve it.


Jill Grant said...

You are such a great sister. Being a caregiver is a very exhausting venture. I cared for both my mother and father until their death in my home. It was an experience I would never change but I think you are very wise to have your brother in a care center. I knew my parents would be around a few years at the most but there were times I thought I was going to be the first to go. They were so loving all their lives but having all the care 24/7 was almost too much. I did have my daughter and husband who helped me so much with the physical work but the mental stress of making all the decissions was definately the most difficult.
You are a blessing to your brother! Keep yourself healthy and ask for help from those you trust. God Bless You!
Because of my experiences I developed an internet site which offers products to help when caring for loved ones. Please take a look at it and pass it on to those who may need it. Jill

Trish Hughes Kreis said...

Jill, Thank you so much for your comments. What a caring daughter you were to take care of your parents! It is a tough job but think of the example of love and family you showed your daughter. My husband and daughter are also so supportive and it makes a huge difference to have that extra support. I checked out your website, too, and it looks like you carry a lot of helpful products. I'll be ordering soon and will pass along your website! :-)