Blog, Fit2B Magazine
My Story of Caring for My MIL with Dementia
My mother in law arrived to stay with us on December 27th, 2023. She had been diagnosed with dementia the prior Summer, and so was my husband’s father. Their situation in rural Montana – where they lived off the land and were vibrant parts of their small community – had severely declined, and she was no longer safe.
We became her full-time caregivers, and our lives and home were rearranged to wrap around her. It was a lot like having a newborn: I often wasn’t sure what day it was or when I last showered. She was always fed and cared for, but I’d realize at the end of the day that all I’d had to eat all day was eggs and coffee. We also had a week-long Winter storm which brought freezing rain which left us isolated indoors with her.
Somehow I managed to maintain exercising at least every other day. She couldn’t be left alone, so I had to make sure my son or husband could keep an eye on her while I snuck in a lifting session or did some rebounding after she was in bed… which was never really, because she got up 27 times every night. Still – exactly like I preach to my clients – just 15-20 minutes made me feel better and more in control of myself.
View this post on Instagram
Caring for her was a twilight stage that demanded every ounce of my physical, mental, spiritual, and emotional strength. I’m glad I was strong enough to support all 98 lbs of her skeletal frame, but I’m still angry at the amount of paperwork and bureaucracy we had to deal with to get her on medicare and medicaid (because she trusted her husband to handle that stuff, but he didn’t) and I was astonished that our home and pantry seemed to simply expand to make room and provide for her when she arrived with one change of clothes and 2 packs of diapers. I felt like the woman in the Bible Story whose jar of oil never ran out. Things kept arriving from friends to help us get her settled, and my son rose to the task of helping with her in a way that warms my mama heart.
Kinda Funny Story:
What do you do when your elderly mother-in-law with Alzheimers needs more cushion to sit her bony buns outside where she can soak up some sunshine? You place your brand new yoga mat and a blanket on the metal patio chair.
What do you do when she starts to shake – despite the warmth of Springtime sunshine – because she can’t form the words to say she’s done and wants to go inside now? You help her directly inside and leave the blanket and yoga mat behind, flapping in the breeze.
What do you do when a wind and rain storm come along at the same time your MIL needs help using the bathroom? Hello to our moody Spring in the Pacific Northwest! You ignore it, completely forgetting about the blanket and yoga mat.
Well, then what do you do when you sign up to take a yoga class, coordinating multiple people to make it possible for you to get out of the house and have a brain + body break – but the chairs have blown over and your blanket and yoga mat are nowhere in sight? You put on boots, go tromp around outside, look until you find them, and bring them in to drip-dry in front of your heater or fireplace.
Yes, that’s what I’d just done as I wrote down this memory while staring at a dripping “natural rubber” yoga mat I’d splurged on for myself, and I’ll be honest: I’m kinda mad about this too!
Oh yes, there was a lot of beauty in that time with my MIL, but it was mostly work and mess and loss, and a lot of it wouldn’t have been so hard for us to sort out if she had taken care of her own healthcare paperwork 20 years before that like she should have, or her husband hadn’t been so stubbornly opposed to signing up for services and asking for help when they needed it a decade ago. They hid their problems, ranted at “welfare recipients” who couldn’t do things on their own, and both ended up sitting in their own feces in their home while having psychotic episodes that were horribly dangerous to themselves and others.
Unsolicited Advice to Avoid This Happening to You or Your Family!
Do yourself a few favors: keep alllll your photo ID’s and important documents in a safe place. Write your will and wishes down NOW and have them notarized. Sign up for medicaid/medicare (if you’re in the USA) at age 65 so you don’t have to pay the higher rates later or lose your property when you require expensive care … and don’t think for one hot second eating all organic and living on a farm will save you, because my in-laws were the king and queen of homesteading! They did EVERYTHING right and wholesome and healthy and still fell apart. My father in law’s monthly nursing home bill is currently $28,000… per month!
No, we cannot care for him. He suffers from violent delusions and wandering episodes and requires a lovely cocktail of meds and constant supervision that would be beyond any of our abilities.
Also, please PLEASE be willing to ask for help. Be sure you have good insurance because you cannot possibly save enough for the cost of brain diseases; I speak from horrifying experience. If your spouse/partner is “in charge” of your legal and financial future, don’t assume. Double check what they have in place for you. Don’t assume, especially as you age (or as your parents are aging, because someone might undo/unsubscribe/unravel something you’re counting on) I’ll say it again: don’t assume!!!
And build your relationship with your immediate family rather than ignore them. Repair the rifts. Have that talk. They will be the ones you’ll need to carry you if you get a disease that steals your independence. And for crying out loud in a bucket, start getting strong enough to lift your oldest loved one.
View this post on Instagram
As I publish this, I’m just over 4 months out from her dying in my dining room after we cared for her for 4 months. She’d been on hospice for 6 weeks, and her week-long lingering sleep in that hospital bed passing acquainted me with the word “liminal” which refers to the in-between phases of life where we can do little but wait and hold space.
View this post on Instagram
I’ve done my best to give myself grace and allow myself the same amount of time to recover as I spent living in a traumatic time. You know? Like, with pregnancy, how they say 9 months in 9 months out? But what “they” say and what happens rarely get reflected in real life.
You see, the reality is that I’m realizing it’s going to take me a bit longer, just like it actually takes 2 YEARS for a woman’s systems to return to some semblance of “normal” after having a baby, and that’s with full education for her, support from others, and no additional issues.
These past 4 months of recovery following such a traumatic 4 months of caregiving in survival mode have healed me in some ways, but I’m just now starting to find a new routine. I’m just now starting to sleep through the night again. I’m just now finding some mental bandwidth to focus on my own nutrition again. I’m just now kinda maybe sort of wanting to write and create again. I’m just now hitting my racewalking pace. I’m still trying to find several other rhythms of routine.
And it’s so humbling. It’s humbling to realize I can know all the things and try to do all of them, yet trauma will always play the ultimate trump card. I am doing the healing work, but there’s no fast track. It will take time for my cortisol levels to not spike every time I go for a walk. It will take time for my body to realize it doesn’t have to hoard every calorie. It will take time for my marriage to find new footing after we worked together to change my mother in law’s diapers. It will take time for me to find my new stride.
I believe I will. I believe that was a hard season, and there will be new seasons. I believe I am designed to heal. I believe I have the resources I need to process what I’ve experienced and allow what was meant for evil to be used for good. I believe I am emerging from this trauma with fresh perspective and strength that will be used to help others.
Oh Beth… as you entered the season as caregiver, my heart went out to you. My first husband had type1 diabetes and even though we’d ‘improved’ our lifestyle, it took it’s toll and I was his caregiver for the last few years of his life. A week after his funeral, my 87 yo Dad ended up in ER. I brought him to my place ‘for a few days’ which turned into over 5 months. Thankfully, we realized at the same time I could no longer care for him and he went into a home and my sister and I visited him regularly. He passed away at 91. Healing from grief comes slowly. There will always be the memories. Praying for all y’all as you navigate it, listening to God’s gentle whisper…