Stories from Caregivers: Sandy from NEW YORK
NY
Sandy
FROM NEW YORK
I felt the wheelchair break loose and start to roll back. My husband's 300+ pounds began to lean on me and as I began to lose my footing I jumped to the side of the ramp, letting him free roll back down to the sidewalk. The van, fitted with a kneeling system and oversized power ramp, was a great blessing but it continued to be a challenge for him to pull himself up the ramp and I couldn't push him. Against my better judgement I'd agreed to "just stand behind the chair and brace"� William. Never again, I told him now. If he'd run over me I'd be hospitalized and how would he manage then? I do all the cooking, laundry, cleaning - including emptying his commode in the morning. I set him up for his shower and stand by to help, I get him up and walking for a short distance twice a week to keep up the exercises, stay strong for the next surgery, the therapists told us at their last visit, over a month ago. I set up appointments, advocate for his needs, keep track of the calendar, and do the driving. Five years ago I gave up my job as a teaching assistant to be more available to him. I realized his health was deteriorating at a faster rate, his memory and cognitive skills were getting more limited, home maintenance was becoming beyond him and the isolation of our home nestled in the New York State forests was causing him to sink into depression. "Let's sell the house and buy an RV. Let's go see America."� I suggested and he readily agreed. We spent two years living on the road, mostly camping on military campgrounds open to us because of his status as a disabled Navy veteran. Near the end of those years I realized his navigation skills, always strong since he was a second generation professional driver, were failing. I always left the driving to him - I acknowledged that I was severely geographically challenged. But I began to notice we had been headed west for two hours when we were meant to be going east. Setting up and breaking down camp became more and more difficult. His Coumadin levels were fluctuating wildly and we needed to find a lab every week or two to do another Anticoagulation check. Then he injured his "good"� knee and after a short hospital stay ended up in a nursing home for a month. "Let's take a look at independent senior living"� I suggested. At first he was resistant. He imagined it would be like the nursing home. Or that an apartment in the city would be like moving into the projects his family had fought to stay out of back in the fifties and sixties. But we took some tours and he fell completely in love with with the place where we've lived now for over two years. It's close to our veteran's hospital and convenient for his other appointments. There's an indoor pool and weekly exercise classes and he can nearly always find someone to swap stories with. He's become quite the popular character largely because of his plucky attitude and sense of humor. Over these last two years there have been changes. Major knee surgery, damaged feet, increasing weight have reduced his mobility from walking with balance poles, to full crutches, to a walker to near complete reliance on the wheelchair. The VA just delivered a power wheelchair this week, which will greatly increase his independence. In the last five months I've rearranged the apartment completely several times - his first wheelchair was too large to roll down the hall and pivot into the bedroom and bathroom so I had to rearrange the living room to be his habitat. Bed in the corner, commode nearby, plenty of room to maneuver around. Furniture was crammed into the bed - and bathrooms, out of his way. Then the hospital bed arrived and his bed had to come back into the bedroom, the living room chairs needed to be snuggled up closer because the hospital bed had a bigger footprint. I rented a storage unit for the extra mobility equipment. Then he was able to move back to the bedroom and I needed to store the hospital bed for his foot surgery, planned for sometime next year. The bed is too bulky for storage and too heavy to shift much so it's on its side behind screens in the living room. With the power chair's arrival, we needed to set up a charging station and make room to keep two large wheelchairs in the living room, as he'll need both for different uses. I've come to see my life as a caregiver as one of change, a matter of adjusting constantly to our "new normal."� I've learned to be flexible but also insist on guarding my own well-being, which means more than staying out of the way of the wheelchair. I am not flexible about keeping some space in our apartment appropriate for my needs. I have friends in the building who I can go to anytime I need to vent. I do activities like gardening and book club regardless of my husband's objections. I set him up so I can safely go out to see my mother at least once a week. This is my life. This is our life.
