Sunday, June 25, 2006
Paying the Bills
You know my situation: I am the sole caregiver for my Ancient One mother. I pledged myself to her as her final companion in December of 1993. My level of care for her has gone from sharing a household and a sense of family to me doing just about everything for her, including being her (very assertive) medical advocate, handling all her life business and setting up and putting to bed her life for her everyday. I remain her main companion, her main stimulation, her main human connection with life. I am my mother's sole, full time caregiver. I do it all, including being her personal maintenance director, which includes such jobs as:
- operating as her thirst;
- setting her on an accident free visiting-the-bathroom schedule;
- reminding her, several times a day, to blow her nose;
- maintaining both her sense of humor and mine over how minute and thorough is my invasion into her life, now, to the point of being directly responsible for whether she lives or languishes.
There are a flurry of historical posts, listed below, describing this period in detail:
Almost five years later, I am doing everything alone. How did this happen? I didn't ask this question until recently, provoked by a chance caregiver-article scrounge in which I decided to catch up on The Literature. I happened across an AARP article about "Involving the Whole Family in Caregiving". In reading it through I stumbled over the sentence: " A sibling who lives far away can still help with jobs such as paying bills, talking with doctors, researching local agencies, or calling regularly."
Oh, I thought. That's where she got the suggestion of paying our bills. It was bizarre, but, it was a thoughtful suggestion in the middle of a thoughtful article respectfully encompassed within The Literature; The Literature about helping Mom or Dad to remain independent as long as possible. The thing is, our Mom was, by that time, long past independence. I vaguely (not well enough to reference, I'm afraid) recalled reading another article, some years previous, remembered because the following suggestion to caregivers and caregiver-helpers alike shocked me: Don't do anything you don't want to do, or you won't do it well and you won't enjoy yourself in the role of caregiver. The example used was: If you cannot face changing your Ancient One's diapers (which, admittedly, isn't nearly as sweet as changing an infant's diapers) hire someone to do it. No wonder, I thought, between the two Advisements of the Day, I had people volunteering to do things it's easier to do myself and people refusing to do jobs with which I was sure I needed help.
I am living proof that it is not enough, as a caregiver, to try to never refuse offered help; to have a list of alternative jobs to offer if the offered help isn't necessary; to outright ask specific people for specific help for specific reasons. Now, we have to contend with potential caregiver-helpers deciding, under professional advisement, not to do anything they feel uncomfortable doing; to set up very specific safe zones and stick to them; for their protection.
I didn't need help paying the bills. I needed lots of other types of help. I was specific about the help I needed. I explained situations in detail and how things in various areas had been handled up to the time of the need for help. The best I got were suggestions of how to make the task easier on myself (suggestions I had invariably already put into use); one sister fishing out needed military files which I've since used to conduct Mom's military business; to be fair, one offer to help me go through files, which I willingly threw to the winds in the name of enjoyment when that sister arrived here...by that time I was so sick of hearing about how to help myself, since I wasn't going to be getting the help for which I was asking, that I decided a vacation was in order.
So, see, the thing is, if you are a potential caregiver-helper and live long distance from the caregiver and care recipient, it's important that, if you want to help, you initiate the situation with an openness to expand your boundaries and find out what you have to offer, rather than dictating, ahead of time, only what you think you can offer. Think generously with a willing-to-be-challenged attitude. Be open to giving more than advice; chances are the caregiver with whom you are dealing is aware of the advice you have to offer. Give time. Give involvement. Consider the overwhelming adjustments the caregiver has made and be willing to allow your life the flexibility to adjust for the inclusion of your family caregiver and The Beloved (By All) One To Whom Care is Being Given.
All material copyright at time of posting by Gail Rae Hudson