My dad was diagnosed with congestive heart failure ten years ago; my mom with dementia a short while after. At first, my parents got the majority of the help they needed from their doctors, but as their health concerns multiplied and their daily challenges intensified, I became completely overwhelmed. Although many people told me to transfer my parents to a nursing home, I was determined to get them the help they needed so they could stay together in their home, surrounded by the neighbors they knew since 1954. And so began my journey of discovery. The people and the help I found changed everything. Hopefully, my story will make life a whole lot easier for you.
When my parents’ strength first started to falter, walking became a challenge and getting out of bed was a problem, but I soon discovered that I had no idea how to navigate the medical supply market. I googled “walkers” and searched through scores of bed rail options on Amazon, relying solely on consumer comments for guidance. But I soon discovered that the wide walkers known for increased stability can be difficult to navigate between sofas in a living room and through narrow doorways. Bed rails that are easiest to install under a mattress can be the same bedrails that a person with dementia can dislodge or wiggle around, resulting in wandering parents who are hard to find in the middle of the night.
Finding a geriatric care manager certified by the Aging Life Care Association finally got me on the right track. I found Samantha Fox Hollander in Manhattan and she was a godsend. Samantha came to my mom and dad’s house, walked through their living space and met with my parents individually. She then put together three recommendation sheets: one for home, one for my father and a third for my mother. I’ll never forget her advising us to get a chair lift for the stairs and a seat in the shower. At the time, both my parents navigated stairs well and they had no problem in the shower. But the lift must have taken away some fear because they moved about the house more comfortably and changed rooms more fluidly after it was installed. The seat did the same for the shower. Both my mom and dad entered the shower with greater ease and they took advantage of the seat from day one. As time passed, they truly needed every piece of equipment that Samantha recommended and we avoided countless falls and accidents by heeding her advice.
Besides my parent’s physical safety, their emotional health steadily grew as a concern. After my father’s 90th birthday, he had few friends who were still around. He missed the guys who he used to meet for cards and he had trouble hearing the discussions when I brought him to the local JCC for their social hour. My mom’s mental health made it difficult for her to get out into the community and she too was missing out on the opportunity to share with others. For us, synagogues provided the best opportunity for emotional expression. I took my parents to Shabbat dinners at one location, monthly song festivals at another and gentle exercise classes at a third. Look around your community and find the meeting places that will provide your parents with the chance to enjoy the things that have always brought them joy. Churches, mosques, synagogues and community centers are good places to start. Museums and concert halls often have free programs for people with disabilities. Arts and Minds is an organization that offers museum-based programs for people with dementia and their caregivers.
If you notice that your parent has reached the stage where they will not be getting better from whatever ailment they are experiencing, hospice can offer support that is covered by Medicare. When my mom was no longer able to swallow and she was clearly drifting away, hospice provided us with social workers who offered everyone in the family emotional support. They provided twice weekly nursing visits with backup medical support so I no longer had to struggle to determine if my mom needed to see a doctor for a cough or if she needed to go to the hospital because she banged her arm on a chair and needed bandaging. I used Calvary Hospital’s Home Hospice Care and appreciated their support in every way. However, there are many good hospice programs throughout the country. Your parent’s medical doctor may be able to make a recommendation when he or she feels the time is appropriate.
My mom passed away in January of 2021. She died peacefully in her sleep in the same bedroom that she shared with my dad for 67 years. Because she was registered with hospice, we were able to sit with my mom after she passed for as long as we wanted. My dad was able to kiss her goodbye and whisper loving thoughts into her ear in the comfort of their home, just as both of them dreamed.
My dad turns 102 years old this December. He misses my mom, but he is happy to read the New York Times by the window, looking out on his neighbors as they walk their dogs each morning. And he is happy to smile at the little children who stop by to say hello when he sits in his wheelchair on the driveway on sunny afternoons.
This is the end of life my parents wanted and this is the reward I’ve gotten because I finally figured out how to manage their care.
Resources:
https://www.aginglifecare.org/
Home safety checklist:
- Apply anti-slip stickers in the bathtub
- Tape down rugs to avoid tripping
- Install grab bars in showers
- Purchase a raised toilet seat and consider placing a commode by the bedside if helpful
- Use a baby monitor if you have a parent who wanders
- Install a question mark shaped grab bar to help your parent get out of the bed
- Consider voice activated lamps ( like Alexa) to lessen risk of falling out of bed
Other Miscellaneous Support
- Connect to an elder care attorney to be sure all your parent’s documents are in order