The Imperfect Caregiver

“Mom has Alzheimer’s.” Those incredibly sad words are repeated daily to friends, coworkers, friends, people at church, , even those we meet for the first time. Everyone saying them is lost and alone trying to cope with the devastating effects that Alzheimer’s and the other forms of dementia have on the patient the rest of their family.

For seven years I was a caregiver for my father-in-law, Rodger who had dementia, Parkinson’s disease, severe swallowing problems, congestive heart failure and a myriad of other ailments. Caring for him was the hardest thing I ever did. Often I felt alone and wished for someone to talk to, someone who understood what I was going through. Someone who would listen without judging me when the need to vent the frustration or anger that popped up on the most difficult days. That is the person I try to be now. I hope the things I learned making it up as I went along and what I have learned since becoming a caregiver advocate help you and let you know you are not alone.

Create a care team.

You can’t do it alone. Enlist friends and family members to help. Even if siblings live far away they can pay bills or prepare the tax forms for you. Even calling you once a month can help.

Determine who will have Power of Attorney to make medical and financial decisions for the person with dementia. Get the paperwork done as soon as possible. Siblings often disagree when it comes time to make end of life decisions.  One person must be able to speak for the one who no longer speak for herself.

Find a caregiver support group. You need to spend time with people who understand what you are going through and who can offer practical tips on dealing with issues that arise daily. www.Alz.org  has listings by state and local community.

When someone says, “Let me know if you need anything.” Give them something to do.

Cook dinner for us once a month.

Call when you are going to the grocery store and ask if we need anything.

Get my car inspected.

Cut the grass or shovel snow.

Visit with Mom now and then. She enjoys the company and I can use the time to take a shower.

Spend time with me and allow me to vent without judging me. This is the hardest thing I’ve ever done.

Respite care will become critical as time passes. Being on call 24 hours a day, seven days a week for several years is impossible for anyone to maintain. Believe me, I know.  A sleep deprived caregiver is not an effective caregiver. Plus, your own health will begin to suffer.

People will tell you to take care of yourself first. Unfortunately, they can’t explain how to do that when every minute of your time is dedicated to someone else.

Even well-meaning family members and friends can’t be there every time you need them. Fortunately, in addition to the caregiver support groups mentioned above there many other agencies dedicated to supporting caregivers. Here are a few available locally.

Respite Care:

Right At Home: www.rightathome.net

Blue Ridge Hospice: www.bridgehospice.org

Veterans Hospitals:  If the person you are caring for is a veteran, he or she may be eligible for respite care at a VA hospital near you. Veterans may also be entitled to in home respite care allowing the family caregiver time to rest and recoup ones strength.

Caregiver blogs: An addition to my blog, The Imperfect Caregiver, www.theimperfectcareigver.com some of my favorites are: The Caregivers Living Room http://www.donnathomson.com/; A Place for Mom http://www.aplaceformom.com/blog/; The Caregiver Space http://thecaregiverspace.org/blog/

Caregiver apps can be found here: http://www.aplaceformom.com/blog/best-and-worst-apps-for-caregivers-07-03-2013/

Bobbi Carducci is a caregiver advocate, blogger, support group leader, international speaker on caregiving issues, and author of two books for caregivers, Caregiver You Are Not Alone and Confessions of an Imperfect Caregiver. She is a Certified Caregiving Consultant and a Certified Caregiving Educator. contact Bobbi at bcarducci@comcast.net www.bobbicarducci.com www.theimperfectcaregiver.com