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.

    The level of care my mother required racheted up very quickly beginning in 2000; although, by this time, I had already taken over her personal business. Medical affairs became involved. By the midpoint of 2001 I was foundering in trying to handle everything, including the personal, human detail of tending to someone who is old, ailing and isn't sure what physical or mental faculties she retains. One of my sisters, thankfully, noticed my predicament and, without judgment, began to coach me on how to solicit family help in order to make things easier on me.
    There are a flurry of historical posts, listed below, describing this period in detail:

1. Communicating Relief
2. Relieving Communications
3. Just an Example
4. Continuing Saga of What It Will Take

    Over the days in which the above emails were exchanged, MFS and I addressed, in detail, how to solicit family help, who we thought could best do what and how to rally the family. During this heavy duty organization, MFS volunteered to take over paying our bills, probably because I had lately and briefly gotten behind on paying bills and mentioned this to her. This was only a momentary aberration, though, connected with loads of other hectic business stuff with which I was suddenly struggling. I was a little surprised at her offer. I mean, no matter how bad things get, one can always pay one's bills; and, besides, she was in Florida, it would have been silly for her to be paying the bills for a household across the country within which lived someone who was alert enough to do this. After some consideration (maybe I was missing something here, I thought), I declined her offer but met her head on with a detailed list of how I would like various members of the family to help out: Such duties as taking over the handling of her stocks and twiddling with her financial profile to keep it healthy; taking over the handling of her taxes (which were challenging, at the time); taking over medical management (this was before I jumped into it feet first, but was still flirting with it; I was still feeling, though, that I would be damned if I became that familiar with her affairs); handling her military status and its effect on everything else in her life. Once I had given the matter of my mother's life and my caregiving some thought, I composed a list and even approached family members, individually, hoping to solicit the best qualified member to each task.
    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 about "Involving the Whole Family in Caregiving". [9/15/2013 Update: This article seems to no longer exist on AARP's website. The entire, article, however, is available as a reprint here, at least for the time being. Scroll to page 2 to access it.] 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.
- posted by Gail Rae @ 18:59   email...this post