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. 

You know but you are never ready: Dementia stinks

steepdeclineI have mentioned how often I’m asked about my Mom and I never seem to have a positive answer. I try to remind myself just to thank the person for asking instead of sharing any one of the negative thoughts clouding my mind.

I knew my Mom was going to decline, but as we were on the brink of moving her into a memory care community, her sudden change has thwarted the one positive thing my siblings and I were working toward. She is now unable to move on her own and is mostly bedridden. That is a stark contrast to the woman who was walking the halls just two weeks ago.

Thank you for the kind notes from my fellow bloggers: Mrs. Hsg with Before I forget who has been diagnosed with early onset Alzheimer’s; Joy Johnson with The Memories Project who started her blog as a tribute to her father who suffered from dementia and then needed to care for her mom who was battling cancer; Hallie Swift with A Swift Current who artfully shares her tales of caregiving and loss;  Mariarose of With and Without Her who recently lost her mom to dementia; Sandra Ross with Going Gentle Into That Good Night who shares her knowledge and experience generously; and the many others who aren’t bloggers but reached out. THANK YOU. This journey is tough and hearing from those of you who have gone through it, know it’s coming, or shared encouragement reminds me how much I benefit from this blog emotionally.

We know they are declining, but you never expect the sudden drops that unfortunately, are all too frequent. We also have seen some moments of clarity over the last few days, but know that the inability to manage for herself is gnawing away at my Mom’s will to continue. Shocked.