During the last few years of my mom’s life, as her dementia deepened and she shrunk her world down to the confines of her house, I used to have debates with her about can’t and won’t. She always said “I can’t go out: I miss looking in the stores, but I can’t go out.” Or, when invited to friends, “I can’t sit still that long, or my walker will mark up the floors, so I can’t go over.” “Mom,” I replied: “You can go out, you can visit but you won’t: there is a big difference between the two.” Any suggestion on how things could be arranged for her to get out more: adding a ramp, and getting collapsible wheelchair; using a store-provided wheelchair; friends already would take her home whenever she wanted to go, and arranged things to make it as easy as possible for Mom to visit, was met with a stubborn, no, and some irrational reason as to why not: for example, the aisles in stores aren’t wide enough for a wheelchair (even if they provide them).
Rarely, when she was perhaps more like her pre-stroke-dementia self, she admitted the difference between can’t and won’t: she could go out, she could visit, but she didn’t want to. She hid the post-stroke personality and dementia for as long as she could. Maybe a wheelchair was too much of an admittance of weakness – I don’t know. She had agreed to the ramp; a family friend came over and did an estimate. Then she began to back out: it would take up too much room; the town wouldn’t allow it; the list of complaints went on. Like anything that might make her life easier, more comfortable, less miserable, she rejected a chance for freedom from the confines of her home. The stroke and dementia robbed her of allowing for happiness or pleasure. I stopped talking about the ramp and she gradually let it go.
Since her death, I find myself slipping, as she did, into someone else’s personae. Mom developed unhealthy relationships with people, including her mother-in-law who she disliked. After my grandmother’s death, aspects of her personality increasingly crept into my mother: it was like watching a horror movie about possession. I now know even then the dementia was working its dark magic on her reasonings. (Since her death, I have begun to suspect she had frontal lobe dementia maybe linked with frontal temporal lobe dementia based on limited research I have done of late).
In my case, it’s my mother’s post-stroke/dementia(s) personae. After her death, I have a period of inactivity due to extreme fatigue. I think I was finally able after weeks/years to let go of worries, concerns, aggravations, frustrations. When my mind let go, my body went limp. I felt weak, drained, and struggled for weeks to get through daily tasks, let alone the work a death in the family creates. Eventually, I went home knowing I would have to return: decisions concerning the house and its contents had to be made; a yard sale organized; our stuff sorted through. (I’ve blogged about all this before. I tend to stumbletalk, return on my words, repeat myself. My writing of late has this same no doubt annoying habit.)
During Mom’s hospital stay I got into better physical shape by walking to and from the hospital (uphill in both cases). I lost weight, and while my diet was not perfect (the occasional sugar blowout), I had a handle on sugar and carbs most of the time. The period after her death undid all the benefits: I gained weight due to a change in medication, eating more sugar and carbs, binge eating on a regular basis (for the first time in several years), and walking less. I swore when I came back I would begin a walking regime, watch my sugar and carb intake, and regain the improved state of physical health I had gained in the 8 weeks of Mom’s hospitalization. (The irony being her already weak and poor state of health deteriorated while she lay in a hospital bed.)
But, I did none of those things for any length of time. All the weight (and then some remains on), there are days when I don’t even leave the house (when I would be here in a caretaker role, I would go out EVERY DAY to use my computer at the library, to get groceries, to go shopping, to just get out). A friend, who has seen me weight 20 lbs less remarked he had never seen my arms so thin and wasted looking. All the weight is at my middle, wrapping around my waist and a bit on my hips. The issues with my neck and shoulders (spasms, arthritis, osteoporosis, nerve links to my facial pain) make most exercise including weight training, yoga, resistance bands, and aerobic exercise extremely painful and pain-causing).
My depression deepens (an increase in the meds hasn’t had the desired effect: the problem is also due to my system’s inability to absorb/utilize extended release medication properly). My fatigue increases. And I find myself saying “I can’t go out to the store: I’m too tired, or I haven’t gotten enough done today for the yard sale, or I should be writing my blog.” Any excuse not to go out into the world, the interact with people, to exercise, to be the opposite of my other mother.
I believe that a person can leave their personae behind with someone else: I’ve seen it with my mother. Skeptics would comment that she chose to take on aspects of her mother-in-law’s unpleasant personality. Someone else who made her world smaller by over the years rejecting friends offers for drives, visits, and not calling. Someone, who like my mother, appeared to everyone but certain family members as a “sweet older woman who tended her garden and family with love.”
Now, I wonder if my mother’s depression, negativity, lethargy (which I had already inherited before her death), her need to shrink her world down, her can’t and won’t have crept into me. She rejected computers and the internet: I’ve been considering shutting down my facebook page (I can’t keep up with the prolific folks whose entries are on my wall), stopping my blog (what of interest do I really have to say?), and excusing myself from discussion groups and forums (what do I have to contribute; my contributions don’t further the discussion). To back out of the cyberverse just as I’ve backed out of the universe.
Chronic pain makes connections in the real world difficult; chronic pain can feed the can’t or won’t debate. Chronic illness can make interactions difficult with folks who don’t understand the concept of “chronic”. The cyberverse does provide a way to find folks who get it, who know the ramifications of chronic pain and illness of self, family, friends. They know how small your world can seem when pain and fatigue keep you close to your bed, your couch, your home.
Am I using the excuse of my current lethargy, my chronic pain and on-going health issues to make my world small again? Just when, after years of being out of the work force due to my health and then my mother’s health, my body seems to be sabotaging me looking for work. I can’t find employment if I still have estate issues such as the house unresolved. I can’t look for work when I haven’t got the energy or the heart to do so. My last job search was a disaster and undermined my confidence if myself and my abilities further. Resumes were sent to hundreds of places; applications were completed for jobs that I had all the skills and expertise. But no call backs, no interviews, no interest.
My initial career had faltered, not entirely due to circumstances within my control. My second career was undermined by an individual much the way my previous job had been. Then, no one was interested in what I had to offer. An increase in my facial pain, the development of atypical ondontalgia, a worsening of my IBS, and the beginning of issues which needed me to spend months with my mother stopped the job searching. It was a relief not to be facing rejection on a daily basis. (Rejection has been the story of my life.)
I know I’ve blogged about much of this before. I’m currently working on several blogs (wrote them in my head during my the day I spent in bed) that speak to natural/alternative sources of healing, of positive spins on chronic pain featuring two great blogs on the subject. But the other night, as I once again lay down, tired but needing groceries and a hostess gift for the next day, I said, “Tonight, I’m not going to be my other mother.” Feeling shaky and weak, I got dressed, organized, and headed up the hill to fetch a bottle of delicious hard apple cider, a carry bag and limes for the hostess gift, some groceries including local fresh raspberries, and to indulge in one of my current comfort addictions: a Tim Horton’s Iced Cap(puccino) (the non-supreme version; I have a blog started on Timmies and my other comfort food addiction: oatmeal molasses brown bread).
Now, today, I’m doing the same thing: I should have gone across the river to the newly opened drug store up the hill near the hospital for exercise and to get some drugstorish supplies. But, I used excuses: tiredness, laundry, blogging, to stay in.
To my credit, I did the laundry and hung it out on the line, I blogged (even though the current placement of my laptop (I’m mouse-addicted and need to have a flat surface) causes neck problems and new jaw pains). I’m going out again tonight, so I have to get some sort of a hostess gift (ok, I don’t have to, I want to), and there is a drug store up my mother’s shorter hill because I’m half way up already. And, I can get an iced cap as a reward! (Oops, just used the nutritional calculator: much higher in sugar and carbs than I thought; calories about what I expected. Yesterday day I binged on maple ice cream in waffle cones, so no iced caps for me today. Need to use exercise and getting out as the incentives.
This doesn’t mean the lethargy and fatigue are gone. The pain is manageable so far today though I feel the heightened tension developing in my neck and shoulders which always leads to an increase in the level of facial pain. My IBS is what it is: always with me, never letting me forget I have a “wacky” digestive system. I’ll hit save or publish (not sure I’m ready to let this entry loose into the cyberverse), change my clothes, organize my self and head out. Now, what to get as a hostess gift: wine or chocolate or both?