A friend of mine recently told me she admires my ability to be a “selfish caregiver” or one who practices “self care”. She asked for me to write it up thinking it might help others. My main goal was and always has been for my husband to maintain as much of his independence as possible while remaining safe. This also gives me a certain amount of freedom.
Dave has been handicapped with a traumatic brain injury for 18 years. Early on, we decided not to move from our 2 story house thinking we could make it work. When he first came home from the hospital, we converted the dining room into a “bedroom” with a hospital bed. Later that year, we converted our first floor half bath into a full bath and added grab bars in that bathroom and our shower upstairs. We also put handrails in the front, back and garage exits. Giving him independence, gives me freedom.
Between then and now, we purchased a transport chair (always in the back seat of our van) and a large wheel chair which normally is in the back of the van. Also, I’ve purchased aluminum walkers and roller walkers from thrift stores. We have one walker on each floor and one in the garage so his hands are always free to go up and down steps.
Until recently, he does the dishes, puts the dishes away, pays the bills and does most of the driving when we take trips. He folds laundry and when feeling well, he does the laundry. With a rolling chair in the kitchen, he can also put his dishes on the island when we are done eating. A basket in the middle of the table holds medicine, salt, pepper, sugar and napkins. A pitcher of water is always in front of him to pour himself a drink.
Recently, he was diagnosed with cancer. After chemo #4, he could barely move. Getting him from the 2nd floor to the first was a bit challenging—he has not been on the 2nd floor since then. At first he slept in the recliner, but eventually my daughter, son-in-law and I created a bedroom in the old dining room again. There’s a small shelf that holds his clothes, a floor lamp which he can reach and a kitchen chair which holds a tub of toiletry items: tooth brush, tooth paste, cup, deodorant, medicine, mouth wash and a bowl. This room had one swinging door to the kitchen but was open to the entry way where we have set up a screen.
He became so weak that I had to push him in a wheel chair while managing the walker for him to go to the bathroom. My shoulders and back ached—I was frazzled. We bought a light-weight motorized wheel chair which has worked out great. With me assisting him into the chair, he can go to the kitchen, bedroom or bathroom while I take the walker when it is needed or continue fixing dinner.
To make our first floor more accessible, we have added a new tub chair. Although we put in a full bath on the first floor, it has a tub which has worked out great over the years with young grandchildren. But, we needed a tub chair for Dave. With a little research, I found a tub chair which slid and swiveled. His skin is so thin from the swelling, I was afraid a traditional chair would cause skin tears. But with this sliding and swiveling, and having a hand-held shower, he can shower himself with minimum difficulty.
Last year, we put in a Nest doorbell so we could see when someone was at the door and could tell when packages were being delivered. We now have nurses and therapists coming at all times. To give me a little more flexibility, If I’ve stepped out to go to the store, I’m teaching Dave how to use the Nest to tell them to come in through the speaker on the Nest.
Friends have often asked us if they can bring a meal over or help out in some way. Last week, I took a friend up on the offer and asked him and his wife to bring lunch for all of us to share. That way, they helped, and we had a chance to catch up with them. I had forgotten, Dave hadn’t socialized much with friends since November.
I continue to take exercise classes to keep my body strong and healthy. I know that if I get hurt or sick at this time, we are in trouble. It’s important for the caregiver to stay strong. If that means getting out and taking a walk, then I do it. I carry my phone, don’t go far if he needs me. On wintery days, I use my Wii Fit to exercise.
In addition to maintaining a strong body, I need a strong mind. Social media helps me stay connected with friends and family around the world. Writing helps me sort out my feelings, organize my thoughts and is very therapeutic for me. Church work has always been important to me and I continue working on the church blog, selling items on Ebay for the church and using social media to stay in touch with church friends.
Blue Apron—eating healthy—has been a priority for several years. By having 3 dinners a week delivered, I only need to go to the grocery store for breakfast items, snacks and a few dinners.
When Dave started feeling better, friends came in to sit with him while I went to the doctor or dentist or got a hair cut. Often the caregivers neglect their own health. But like they tell us on the airplanes—first put the oxygen on yourself before helping a child or a person needing assistance. If I don’t maintain my health, then how can I care for my husband?
Although we have had lawn care and a cleaning person for many years, I’ve needed other kinds of help——getting my husband safely in and out of the house for doctor’s appointments and chemo. Friends and neighbors have stepped in. Since his chemo lasts 5 hours, I arranged for one person to come over when we left and I’d text another person to meet us when we got home.
Ways people have helped us:
- lending us ramps and equipment
- bringing flowers to cheer us up
- bringing us dessert when we missed small group
- helping me get Dave in and out of the house safely
- following me to the doctor’s office to help me get him out of the van and into a wheel chair
- sending cards
- prayers
- calling on the phone to chat or to see if we need something
- bringing and sharing lunch
- bringing dinner
- sitting with Dave while I go to appointments
- re-arranging our house to get a bed on the first floor
- picking up a few items for us at the grocery store
We were arriving in New Orleans in the rain after a Caribbean cruise . I always feel anxious disembarking from the cruise. It's not so much leaving a pampered life style behind as it is being in long lines of grumpy people who are worried about their flights home, finding their luggage, getting someone to help them get the luggage to the curb or they just need another cup of coffee. I have more anxiety than most because I feel like it is all up to me---getting the luggage and managing my husband Dave in a wheel chair, navigating the whole process.
