Several times a week, my siblings and I check in on Mom and Dad who have been living in an independent living community for the last few years. With each visit, we have all observed declining cognitive abilities, limited short term memory, and balance issues. As they stroll together arm and arm from their apartment to the common dining hall, they stagger with a shuffling gait which often appears as if they’re going to tip over at anytime. They both depend on the other for stability yet each of them alone is like a brittle branch about to break away from its trunk.

Mom has had two falls this past year, one resulting in stitches to her head due to a cut from the corner of the bathroom counter. Dad lost his balance getting up from his desk and hurt his shoulder; fortunately without a break. Dad’s complaining of sore feet which required Mom to transport him to the dining area in a wheel chair for a couple of dinners. He also has problems swallowing his oral medications, complaining that the pills are getting stuck in his throat. As their healthcare proxy, I contacted their gerontologist and requested a home care evaluation for each of them. In advance of any appointment, I discussed the need for the evaluation with both Mom and Dad since the family was concerned about them falling and hurting themselves more seriously. They did not object to an evaluation- in fact, Dad seemed excited to know that “help was on the way.”

A physical therapist and speech therapist came to their apartment for an assessment within one week of my request.  Shortly after their visit, the physical therapist and speech therapist contacted me with their findings, suggesting a walker for both Mom and Dad. They also recommended home care support with medication management due to their limited capability to reliably take daily medications as prescribed.

I advised our parents that a durable medical equipment (DME) company would be delivering two walkers to them within a few days and that the physical therapist would be by several times to train them on usage and to check up on them once a week for the next 3-4 weeks. Late Friday afternoon, the DME vendor called to report that Mom refused to accept one of the walkers. She told the delivery person that the apartment was too small and could not accommodate two walkers, to leave the large one for her husband and take the smaller one away. She did not feel she needed it, insisting that she had Dad to lean on if she experienced balance problems or she could just use his walker.

When I called Mom to ask her what happened, she could not recall the encounter with the DME vendor but reiterated that she doesn’t think she needs a walker. Whether she has selective memory or her severe short term impairment is real, she was not ready to use a walker despite the encouragement of family and healthcare professionals.

In the last day, the social worker has called for a family meeting to discuss the situation and to design  a care plan that is consistent with the wishes of our parents and the rest of our family.   We found the following reference tool to be a helpful guide in having our conversation about long term care needs: In Case of Emergency Information Checklist.

Our most important focus had to be that the will and determination of our loved ones must be respected. We could force the other walker to be delivered but if Mom doesn’t think she needs it, it will only take up space and gather dust. We all recognize that the risk of another fall, possibly with more serious injury, is highly probable. We, as a family, will have to deal with the consequences of the risks that Mom is ready to accept. From a clinical diagnosis, we know her judgment is impaired but we can’t make her use the walker if she is determined not to. Now the challenge is having her understand that leaning on Dad who will be using his walker is not safe.

However, I can’t help but remember my kids when they were learning to walk as toddlers. As a  parent, I had to let them learn on their own, fall down and pick themselves up. It was only natural to want to prevent the fall by jumping in to save the bump, inevitable screams and crying. Although the situations with our parents and history with kids seem similar, the reality is their frail bones will not likely withstand the trauma as well as a youngster and they will not have the energy to pick themselves off the floor.

The truth is that both Mom and Dad would be safer in an assisted living setting with clinical staff on premises. However, they are happy and content with their social network and their familiarity with their current community is important- after all, it is their home. Our family’s concern about the disruption another move would cause to their overall well-being is legitimate. Like all major decisions, we have to weigh the risk-benefit of making a change.

If keeping them in their current apartment is the goal, then there are immediate steps we can take to improve the current situation.

•    Complete the emergency contact form with up to date information for Mom and Dad. Give a copy of each to all first responder family members.
•    Hire an independent home care company to make with brief visits five times a week to help with bathing and medication management.
•    Subscribe to a personal monitoring system for each of them so if either of them fall, they can call for assistance and the appropriate family members can be promptly notified.
•    Engage physical therapy (PT) to train and reinforce the proper tactical use of the walker by Dad. Offer Mom the same with each visit if she will accept a walker.
•    Install hand rails in the bathroom wall and shower.
•    Change the bathroom door to not lock from the inside or add the capability to unlock from the outside in case either parent falls in the bathroom against the door or when they have locked the door.

Our objective is to keep them together as long as possible so they can age in place. Time will tell. For now, we must remind ourselves that as caregivers, we must involve the individual’s feelings and wishes into the care planning process. At any age, we would want the same respect.