Navigating Caregiving

Navigating the Uncharted Waters of Caregiving

When you are thrust into caregiving, as many of us are, it requires learning on the job.

My parents have been in need of some level of caregiving support for 20 years. First, my father was diagnosed with Parkinson’s disease. My mother cared for him at home for many years. She hired a little help for some of the days, but my dad didn’t love having unfamiliar people there. So, my siblings and I helped some, but she mostly took on caregiving herself.

Four years before he died, my mother was also diagnosed with Parkinson’s. She didn’t need care for several years. She needed support, though — for doctor visits, after-surgery care, and encouragement. In the 14 years since, she has had differing levels of needs. About seven years ago, she started needing several hours of help to take care of herself and her home. In the last few years, we moved from part-time help to full-time, in-home care for her.

We try to make the best decisions as we go. Here are some things I have learned that might help you if you are facing a new caregiving situation.

Boundaries. It is imperative to have time away, even if you are the main caregiver to a spouse. It is good to have help, either from people you hire or from friends or relatives. Even if you just set up a room in another part of the house that is your sanctuary, or you have a workshop in your garage, or you go out to a garden, you have to fight to find a way to keep living.

Routines. As a caregiver, it is good to set up daily routines. It is helpful to have a schedule that others can follow if you or a main caregiver is not there. It can be simple, such as having times for listening to music, doing a puzzle, looking out the windows, or exercising for 10 minutes. Schedule in taking a drive or a walk outside. A day can include all of those things. If your loved one is living in a care home, encourage activities or attend some with them to get them started. Don’t let someone sit in front of a television for 15 hours a day.

Separate Night and Day: Make sure your loved one sleeps in one place and is awake in another. Change clothes for night and day. Keep a healthy rhythm of life to give your loved one the best chance to stay lucid and not get confused.

Comforts. Look to use as much technology or products that help the person be as independent as they can be for as long as possible.

Pay Attention to the Environment: A lot of people who are in need of caregiving stay in one area much of the day. It is good to rotate things your loved one is looking at — new photos, new books, new artwork. It has helped my mom to see different things depending on the season. I recommend you eliminate clutter.

Encourage Visitors/Foster Meetups. People tend to not know how to visit sick people. If your loved one is able, arrange to meet someone for lunch and attend with them to help your loved one converse or keep the conversation going. Encourage people to stop by for a cup of tea or just to watch a show. Visitors help so much more than anyone understands, but sometimes the person who needs care doesn’t feel they can “perform” for visitors, so you or someone trusted might need to be there to help bring calm and comfort.

Because my mom has a lot of children and several live nearby, we have been able to keep her in her home. We try to share the responsibilities, but it does require sacrifice and flexibility. This doesn’t work for everyone, but even if you have chosen a different care method, you can still make a difference.

Processes Everyone Can Access

Our family has found it helpful to put processes in writing using Google documents and spreadsheets that can be shared across the family. Here are some that we use:

Process: Managing Medications

We have a Google spreadsheet that is a daily checklist of all my mother’s medications. It has sometimes included specialty drinks such as Liquid IV to track her drinking. She takes medications every three hours, so for some this might not be necessary. There are also new pill bottles that have a timer on top, or more pricey ones that have an alarm go off. I have a friend who just called her mother twice a day and made her take her medication while on the phone with her.

Process: Managing Caregivers

We have a Google spreadsheet that is a calendar of caregivers’ schedules by the hour each week. That way if we have a gap or need family members to cover certain times, everyone is aware. It was also helpful for our mother to check when she was able to know who was coming. She did resist the caregivers, but we worked up gradually and we refer to them as assistants or helpers.

Today's Transitions Spring 2024 | By Anita Oldham