Watching someone you love slowly decline is gut wrenching.
My family and I recently returned from a nine day family vacation in Northern Michigan. Here’s the odd part…we vacationed at what is now the permanent residence for my 81 year old mom who is bedridden and needs 24 hour care. My older AMAZING sister Susie is mom’s primary caregiver and the future guardian for my older developmentally disabled brother who is also currently living in Michigan.
In past years, my extended family from various US cities has all tried to overlap vacations so we could all see each other. At the time, the house in Hubbard Lake was a summer home for my parents and a retreat for all of us. This year, we planned in advance that spreading out across as many days as possible would be best to give mom a longer time span of visitors and my sister Susie some mental sanity and self-care.
My little sister and I overlapped a few days together – because you just can’t pull the #sisterpower completely apart. We are stronger together and we have topics to discuss that warrant face-to-face conversations. Sometimes the topics are power of attorney type stuff. Other times we just need to hear validation from each other that we are doing enough and not losing our minds.
As a family, we have done this trip to Michigan every year – by car. It’s a 15-16 our drive with stops. Sometimes I have done this long trip solo with my kids or with just my mom! A true testament we all really enjoy our lake time. This year, as my family and I approach our annual happy place, I prepare my kids and husband for what they are walking in to. They haven’t seen my mom since she was put on hospice and confined to her bed in the living room last fall. I had just seen my mom earlier in the summer. I’ve been striving to fly up at least once a quarter to provide my sister some extra hands and cherish the moments with mom. I remind my kids to spend time with their Mimi as this may be the last time they see her alive. They quickly comment that I have told them this almost every year of their lives – all 17 and 19 years of it. That lines up since my mom’s health (and up until 2014 dad too) has been incrementally declining every year that they can remember.
Here are a few of the sweet moments I captured with Mimi’s grandkids. There were several others I missed with my camera.
Thankfully, mom’s mind is still really good. She might have been guilty of mixing up the kids names from time to time but she’s been doing that for years – with six kids sometimes she’d just run through the list and even include the pet names! On each of my individual visits this past year, I have found her to have some hallucinations or “stories”. Some of them repeat. She asks us if we see the wooden people. She comments about seeing a former neighbor and her kids from over 50 years ago. She told detailed stories about seeing a young version of her mom at the bottom of her bed and being upset that she wasn’t speaking to her. We usually ask questions about the “stories” rather than discounting their existence. Contradicting her completely frustrates her and our overall desire right now is to keep her comfortable.
Mom is definitely at her mental best in the mornings. I enjoyed sipping on coffee with her and savoring the beautiful outdoor view. She has seen the same view for 8 months. I’m amazed how she still finds it beautiful.
I do have to mentally prepare myself when I walk toward her bed. Will she be content? Will she be spiraling down her list of grievances that I affectionately call her ‘greatest hits’? Will she find joy in reminiscing? Is it safe to share what we have been doing without feeling guilty about her lack of participation? Is she seeing dead people or elaborating on her true “stories”? It’s a walk over to her bedside which requires a mindset of acceptance.
Sometimes keeping her comfortable means we are uncomfortable. Our patience is challenged while we play Uno or King’s Corners with her. We verbalize the played cards and explain all the potential plays to her. There is no good place to sit around her miniature brown hospital table. Sometimes she forgets that she can’t get up and asks why we don’t all move to the nearby card table. My sisters and I, or the visiting care professionals, stand or slide a hip along the side of her bed or grab her hand from a nearby lower than her bed chair. I often contemplate sliding next to her in her bed but much of her body is sensitive to touch – particularly her arms and legs. Instead, I revert to what is safe and best for her – snuggles and smooches and make mental notes to remember the scent of her skin.
While we were visiting, mom slept A LOT. Since she is bedridden, she cannot be left alone anymore. My brother with developmental disabilities has always been nocturnal. We are all truly grateful for what used to be an annoying habit for our family. My brother enjoys have the space mostly to himself while watching TV or on his computer. He sits near mom and will grab Susie if mom really needs something.
During the days the family was visiting, we all wanted Susie to participate as much as possible and wanted to have true family vacation type moments. This took planning. Many texts were shared in advance about the overall plan for the weeks we were up there. We identified where Susie would need to secure private or professional caregivers so she could enjoy what we love most about the lake – boat rides, sunset views, lounging in the floating party raft, playing games and napping outside on the quilt.
It’s odd coming back from a vacation and having people ask you how it was. Only truly a family caregiver would really understand what vacationing in a caregiving home with a loved one who is currently on hospice and requires much care can be like. Instead, I simply answer “It was wonderful to spend time with mom and the family and relaxing to be at the lake.”
You may enjoy these episodes of the Happy Healthy Caregiver podcast:
