Excerpt

Show Up, or Shut Up: If They Dont Help, They Cant Criticize.

Commitment + Accountability = Entitlement

Sometimes, family members offer to help and fail to follow through, but they still feel entitled to comment on the care plan.

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Mr. OM developed heart failure and liver disease after years of hard drinking. His legs were swollen; he walked slowly and he often forgot to take his medicine. He lived in his home with Daughter E, who worked nights in a bakery. Son A was a successful lawyer who lived downtown. Mr. OM chose Son A to be power of attorney for health care and finance, because of his sons profession and his status as the eldest child. There were no other family members.

Daughter E gave Mr. OM his medicine, prepared meals, cleaned the house and did laundry before going to bed at about 2 pm. She left for work around 10:30 pm after bathing her dad and putting him to bed. Mr. OM woke his daughter several times each evening and he called her frequently through the night, complaining that someone was in the house. Sleep interruptions left Daughter E exhausted; the phone calls caused problems with her employer.

Federal Express delivered packages to the house every day. The packages contained merchandise from television shopping programs, but Mr. OM denied placing any orders. He also hid the packages. Mr. OM became angry when his daughter asked him for a permanent marker to make return labels. He could not understand what she wanted even though he had used markers to label packages in a shipping department for over thirty years. Return shipping was costly; Daughter E often found the packages too late to return them for refunds. She worried about finances; she worried about leaving her dad alone and she worried about keeping her job.

Daughter E needed to curb Mr. OMs spending; she needed to rest, to work without interruptions and to relax with friends. She asked her brother to help by calling their dad in the evenings and taking him out for a few hours on the weekends. Son A agreed wholeheartedly, but every time his sister asked for a specific time, he gave her a list of his many time commitments. Son A saw no reason to cancel Mr. OMs credit cards, to use his dads money to hire help, or to arrange adult day care.

A neighbor agreed to help Daughter E by sitting with Mr. OM for a few hours three evenings a week and every other weekend. One winter night, the neighbor called Daughter E at work. Mr. OM had come to the neighbors door at midnight, wearing only his pajamas, without a coat or shoes. The neighbor could not convince Mr. OM to come into her house, so she walked him home. Daughter E left work early; the bakery manager was not pleased.

Daughter E tried to convince her brother that their dad needed help, but Son A made light of all of her concerns. Why shouldnt Dad buy whatever he wants and why should he recognize a permanent marker after all these years? Son A was not concerned about Mr. OMs midnight trek in the snow. He just needed to stretch his legs. Son A accused Daughter E of being too eager to restrict Mr. OMs independence; he also said his sister was selfish and ungrateful. You left Dad with a stranger after all hes done for us!

Daughter E was angry and heartbroken. She had always looked up to her brother and she did not want to fight with him. She wanted to take care of their dad, but she could not continue under the current conditions. She gave her brother several options. He could either:

* take more responsibility for their dads direct care, or
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* respect Daughter Es concerns about their dads needs, giving full emotional and financial support, or
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* give up his power of attorney and agree not to contest his sisters petition for guardianship of Mr. OM
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Daughter E decided to move out and leave her brother with both responsibility and authority, if he did not get with the program.

Son A was shocked into action by his sisters ultimatum. He agreed to a comprehensive geriatric assessment for Mr. OM and he worked with his sister to put the level of care prescription into action. They protected their dads money; they hired workers for evenings and weekends and they arranged respite care for vacations.

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No matter how much caregivers may love and respect them, family members lose the right to criticize when they offer no help, or when they offer help and fail to follow through. Caregivers do not have to actually tell anyone to show up or shut up. Just inform family members about the level of care the doctor prescribed; ask them for help and hold everyone accountable for the help they offer. Remember the conversation I suggested in Chapter 2: Getting Help From Family and Friends. The doctor says Mom needs A, B and C. Ive done A. Can you do B, or C by D time? When relatives do not come through with the help they offer, the caregiver should do what she needs to do. She can remind relatives of their broken commitments when they criticize, or she can just ignore them and get the job done in a way that works best for her and the senior.

Do not accept responsibility without authority.

Daughter E was Mr. OMs primary caregiver, while Son A had the right to make all of the financial and health care decisions. This is unfair. The person with direct caregiving responsibility cannot have her hands tied as she tries to provide the care. Frontline caregivers must have a major role in deciding how to use financial resources for care. If the caregiver is not the guardian, or legal power of attorney, the person who has that authority must support the caregiver completely.