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Learning caregiving the hard way

My 84-year-old father had a heart attack and stroke seven years ago, right inside the doctor’s office. Although he spent a few weeks in a couple of area nursing homes, the majority of his care has come from his wife and myself. I have never had any training in caretaking and what I learned, I got from watching the nursing personnel at the nursing homes Dad was in.

My dad only liked the physical therapy part of rehab at the nursing homes and even though the stroke caused swallowing difficulty, he hated speech therapy. Because of aspiration issues with swallowing, Dad needed thickened liquids and semi-ground foods. At one point, Dad even had a Peg tube placed, but was taken out several days later. Dad’s only thing he really enjoyed, was his ability to eat. He lost a lot of weight though his dietician was strick with his diet choices. Well after Dad came home, Mom’s great cooking got Dad back to more healthy weight.

Next problem with Dad’s health is his irregular bowel patterns. Now many of you probably never heard this “code brown” expression, but it fits my father to a tee. The cost alone for supplies Mom needed to get to take care of this problem is very high. Diapers, pads, wipes, gloves, creams, and powders and Pepto-Bismol and limotol cost $100 every  month!

Mom has two compression fractures in her spine, and is only 5 feet tall. Dad is 6 feet tall. Now envision these two walking to the bathroom … Dad with gait belt on and using wheeled walker and Mom holding onto Dad to get into bathroom and bedroom everyday by herself. Sometimes Dad knows he has to go poop and other times, he stands up and it just comes out like a cement truck! He cannot hold it and can only walk so fast.

Mom and myself are so tired and frustrated dealing with all this, but when it cost $3,000 a month for nursing home care, what are our options? I have my parents live with me over the winter in my small condo. This gives my Mom a little break as I am around to assist with Dad’s daily cares.

I guess what my mother and I need the most, is a support group to get emotional support.

We recommend that caregivers find services in their area for support. Visit FCA’s Family Caregiver Navigator for state-by-state information and resources: www.caregiver.org/care-navigator. FCA hosts online support groups and local (San Francisco Bay Area) in-person groups. More information is available at www.caregiver.org/support-groups.

FCA resources for toileting may provide some help: Toileting for Dementia tip sheet and Ch. 5: Toileting & Incontinence (Caregiver College Video Series).