The Complete Caregiver's Organizer. Robin Porter

when absolutely necessary to protect a loved one. Guardians are typically required to provide the court with regular reports and financial accounting.

      The bottom line—many times being a caregiver involves not only caring for a person’s personal and health needs, but also means being someone’s financial guide, legal aid, and voice when they are not able to speak for themselves.

       Care for the Caregiver

       Avoid the Guilt Trip

       When Henry’s wife, Ann, had a stroke, he took on the role of caregiver with love and compassion. With time, they developed a comfortable routine, and Henry, who was a planner by nature, felt he had all the bases covered. He even scheduled a weekly poker night with his friends to get out of the house. While Ann still needed help with certain tasks, she was doing well enough to be home on her own for a few hours. In fact, she had developed a habit of watching various home shopping channels and was often still in front of the television when Henry returned.

       “I thought she found these programs comforting,” said Henry. “Sometimes she didn’t even seem to be watching—it was background noise while she read.”

       But Ann was doing more than just watching. Packages began arriving at the house that Henry didn’t order—including expensive luggage, a blender, and a pair of high-end tennis rackets.

       “Well, it was a little strange, since we’ve never even played tennis,” Henry chuckled. “Ann was ordering things that we didn’t need and couldn’t really afford. When I asked her why, she couldn’t explain. Sometimes she didn’t even remember placing the order.”

       It had never occurred to Henry to remove his wife’s credit card from her purse. She wasn’t able to drive after the stroke, and he never thought about placing orders over the phone. Unfortunately, he had no choice but to take the card away and explain to his wife.

       “Initially, she was very angry with me,” said Henry “She saw it as another step in losing her independence, and I was considered the ‘bad guy’ for a long time. I can’t tell you how awful that felt.”

       Taking things away from loved ones, such as car keys, credit cards, and financial freedom, is very difficult for most caregivers. Even when you know steps such as these are necessary, your actions can feel punitive and seem hurtful. Those feelings of guilt can cause a great deal of stress. In fact, guilt is so common among caregivers, the term “caregiver guilt’ is a widely used and recognizable term (see chapter 8 for more on handling emotions).

       In Henry’s case, he felt so guilty that he canceled his weekly outings, along with his morning walks. However, after a few weeks, he began feeling irritable and cranky, and so was his wife. When he confided in Ann’s physician, he told Henry to lose the guilt and reclaim his personal time for both their sakes. Instead of focusing on what was being taken away, he suggested that Henry “give something back.”

       “Our physician suggested that part of the problem for Ann may be boredom and not feeling useful,” said Henry. “So I taught Ann how to play some simple computer games, which she enjoyed, and also helped with her cognitive functions.”

       Henry also identified some easy tasks for Ann to do around the house, which made her feel like she was contributing to their life together. Finally, he asked a friend to come over and keep Ann company one night a week.

       “When Ann first had the stroke, some of our friends offered to help,” recalled Henry. “But, I didn’t want to impose and never really thought to take them up on their offers. When I finally called one of Ann’s friends, she was happy to help out and wondered why I hadn’t asked sooner. It turns out she was feeling helpless and looking for a way to reconnect.”

       It would have been easy to let the guilt get the better of him and just stay home, but Henry realized he needed those nights out to interact with friends and relax. It made him a better caregiver and allowed his wife to have a break from him, too!

CHAPTER 3

       PRESERVING INDEPENDENCE

       “I was born with a fierce need for independence.”

       —Michelle Williams

       Not Today

       Even as it became more difficult for my mom to do simple tasks, she always insisted on getting dressed for the day. It made her feel less infirm to be presentable, even if she was staying home. This makes sense since taking care of one’s appearance can have positive psychological effects. However, I never realized what a monumental effort this was for her until I came over early for an appointment. Usually if she had a doctor’s appointment, I would find her already dressed and ready when I arrived, but one day I decided to get a few things done around her condo before we left and showed up sooner than expected. While I was putting in laundry and unloading the dishwasher, I could hear her getting ready in the bathroom and bedroom. Time ticked by, and before I knew it, we were running behind. But my mom had still not emerged from her room. When I went in to get her, I was amazed to find her still struggling with her clothes—it had taken her nearly an hour to get this far! It became obvious that she needed more help than she was letting on.

       In addition to the spinal condition, she was battling ever worsening arthritis and damaged rotator cuffs (as well as a host of other ailments), which made everyday tasks extremely difficult. By this time, I had already made many modifications to help her in the kitchen and bathroom, but I hadn’t thought of the effort of dressing and, of course, she didn’t say anything. (This would have been seen as more evidence as to why she shouldn’t be living alone!)