Leveling UP
I’ve reached a new stage in my caregiving journey with mom, and, frankly, have been feeling a bit out of kilter on a regular basis since mom moved to memory care in January. Part of that may be because I took three weeks in February off and another two weeks off in March, both of which were times for me to see my family and friends in Kansas. But there is another part with which I am still trying to find a balance.
Not being with mom every day means that I must rely on the caregivers at her (wonderful) memory care facility to keep me updated on her status. Honestly, I wish I heard more from them but realize that part of the benefit (?) of mom being in memory care means that I can ‘turn off’ my hypervigilance.
It is not so easy to do.
After years of being hypervigilant, I am finding that my ability to ‘let go’ is greatly hampered. Let me give you an example:
Last Saturday, I picked up mom from memory care to go to her sisters home to work together on new markers for family graves. (It is a Midwest thing to decorate graves of family this time of year for Memorial Day-is it a thing to do in other areas of the states?) Between my two aunts and myself, with mom is bow fluffing duty, we managed to create several crosses to place on the graves. Mom seemed to be in good spirits working on the crosses, and the four of us went to the cemetery to place the crosses. Mom stayed in the car and observed as we placed them in the vases, though she did think we had put them on the wrong graves. We assured her that we got them on the right ones, pointed out the bench for Grandma and Grandpa L underneath the tree near the family graves, and headed to lunch at mom’s favorite place.
After lunch mom had a bathroom emergency, so instead of heading out to daddy’s grave to place his cross, I dropped mom back at her apartment to shower, and I told her I would return on Sunday, my usual afternoon to visit, and we could go to daddy’s gravesite then.
Well Sunday when I arrived, mom was greatly agitated, insisting that somebody needed their butt kicked (NOT mom’s ‘usual’ language at all!) and insisted I come with her to address the problem. I attempted to ask gentle questions to try to determine the issue to no avail. Imagine my surprise when she led me to the apartment next to hers where she knocked aggressively, and we were told to come in.
A lovely gentleman was eating his lunch as we entered and mom said ‘this isn’t the person I thought it would be’ but then began to interrogate this man and wag her finger at him demanding her agree with her version of the events from the evening before.
I immediately apologized to the man, removed mom from his apartment and returned her to her own apartment before searching for one of the attendants to try to find out what was happening. When the attendant arrived, they said that Saturday night mom had insisted that another resident be taken to bed. And then related that mom had another resident visiting with her the evening before, and that while she was a little agitated, it didn’t seem out of the usual for the attendants.
Here is where my years of caregiving offer a more detailed perspective.
I knew that the behavior and the language mom was showing WERE out of the usual for mom. And there was something underlying which needed to be brought out into the light.
I have learned, and continue to learn about dementia and how it presents in our loved ones behaviors, and one of the things I have learned is that a PHYSICAL ISSUE can often be the cause for these personality changes: pain which is not being addressed, dehydration, lack of adequate sleep and even UTIs can cause these changes. So after sitting with mom for a couple of hours, I ended my visit with her and immediately requested a urinalysis to determine if mom had a UTI.
The Nursing coordinator took a sample early Monday morning and requested via fax an order from mom’s primary care doctor but also asked me why I was requesting the test. I explained the above to her, that her behavior and language were NOT usual, and that I understood UTIs could cause such things in dementia patients. Order came through and test was run.
Guess what? Mom has a UTI and is now on antibiotics.
I guess what I’m saying is that even when the caregiving journey takes a shift, our hypervigilance, our gut feelings as the one(s) who have been in the trenches 24/7/365 are STILL necessary for our loved ones. And getting used to the shift from the constant in-person caregiving to a less hands-on caregiver is yet another off-kilter part of the journey. So trust your gut feelings, ask for the things you believe your loved one needs, and do your best to unplug when you can from hypervigilance mode.