The Long, Tough Slog of Caregiving

Footpath in FieldsMy visits with mom now feel more like a “spot-checks” than visits. The good news is that she is finding enjoyment in the community events (or at least more interested in them than a visit from me most days) and I won’t pull her from something when she is engaged. The medical team has mentioned this several times. If the doctor comes to visit and my mom is in an activity, she will refuse to leave and tells him to return when the activity is done.

That level of thought and conversation are rare for someone in her later stage of vascular dementia. She moves in and out of this stage and has some days where she just doesn’t want to get out of bed or can’t put a sentence together. But when she’s on, she is still quite witty. I’m seeing less and less of witty mom.

I’m having to address some other health care issues like an ear infection and some suspected basel-cell skin cancers that need to be removed. Now that she is in a wheel chair, it’s quite difficult to get her to the appointments and the waiting room stay can be difficult to navigate because mom doesn’t want to wait on anyone else, but it’s still manageable.

We were hopeful that mom would get out of the wheelchair but her fall a few weeks back has dampened that glimmer of hope.

The periods of little hope and all care management are emotionaly difficut for me. I want to pull back, but know I need to continue to advocate for mom. I’m still trying to navigate hospice services, her community care services, external medical appointments and keep it cohesive and within the parameters of her wishes. It’s so easy for the medications to escalate or an issue to linger.

You know you are on a tough journey, but want to have something positive to look toward. I had accepted this decline before, but when she fights back you still want to celebrate the victory. Then you realize she unknowingly is fighting to extend a quality of life she wasn’t interested in living. I work to find the bright moments to make this long, hard path tolerable. Maybe when I visit tomorrow I will find witty mom and we can share a laugh. Hoped. 

Others step in when you need it most on the caregiving journey

amymessageI was recently asked about my caregiving journey. It’s been long, strenuous, challenging, rewarding, heart-breaking, fulfilling, and relentless. We recently moved mom to a new community focused on caring for those with dementia. I immediately lost one of our long-term caregivers, and then a second regular within the first two weeks. My mom’s not integrating into the scheduled activities. I got enough calls about it that I met with the Executive Director who suggested we consider new caregivers. This week we are trying out two new assistants to help get mom in synch with her new community. I know the change isn’t good for her, but for the short-term, I know if we get her to participate in the scheduled activities, we can get the extra-assistance out of her room.

She is now in a smaller room and the caregivers are with her from 8 a.m. to 8 p.m. She doesn’t like that others are with her. In her old community, they could sit in a connecting room and she didn’t know they were there. Now they are within a few feet of her during the day and she’s choosing to sleep more.

My golden rule with mom: If it doesn’t make her happy, don’t do it. I am trying to figure out how to get her more independent so we can eliminate the personal daily assistants (pdas). To do that, we need her to engage in the community. This challenge is weighing on me. Thankfully, I have very engaged siblings and my brother and his wife are coming to town to visit with mom this weekend.

Yesterday, a volunteer with the hospice company called me to ask if she could stop by and visit my mom? YES! I call her back to share more information about my mom and she tells me she will stop by to visit mom at dinner. I know my mom with enjoy company for dinner. She sends me a nice text after her visit and tells me she will visit her again on Friday.

This woman is a ray of sunshine to me. She has no idea that for decade leading up to the early signs of dementia, I ate dinner with my mom every Tuesday night, and then my parents came to my house for dinner every Friday night. The reconnection to this memory brings a smile to my face and the idea that someone else will stop by to visit mom in her new community and have dinner with her every Tuesday and Friday night brings joy to my heart.

The journey is long, but there have been and will continue to be so many people who have walked with me it makes it easy to continue on. Appreciated.