My name is Chamundi Sababathan. I cared for my mother for her last six years, until about two months ago, as she struggled with Alzheimer’s. After she passed on, Leah Eskenazi asked me to accept the position of “Peer Facilitator” for the Link2Care online support group.
I’ve read that a large percentage of caregivers die before their loved one. I believe this is a direct result of the stress involved in the task.
In my experience, one of the primary stressors for the family caregiver is the terrible sense of isolation. Frequently, friends and family simply disappear, fearing that if they start helping, they could be sucked into what they perceive as the “black hole of caregiving.” This is actually not an unreasonable fear.
Other huge stressors are the fear that you don’t have the required knowledge, training and experience to cope with the challenges your loved one is presenting, and the fear of the future—not knowing the unique course your own loved one will take through the trackless wilderness that is Alzheimer’s, and not knowing how to be prepared for what may come.
When I first started taking care of my mother, I knew very little about dementia, except that her sister had had Alzheimer’s disease; but it had become evident that something was very wrong. For example, balancing her checkbook each month had become impossible for her, yet she was extremely resistant to accepting any help. She had abandoned her earlier very realistic recognition of her deterioration—the recognition had become much too painful—and had become very defensive, even aggressively so, if she felt anyone was questioning her competence. And yet, in unguarded moments, she would say, “I just don’t know what’s the matter with my memory.”
Everyone caring for a parent with dementia must learn to function as a “parent” of their parent. This transition is fraught with difficulty and with pitfalls. If not handled carefully, the parent may become antagonized and fearful rather than comforted and reassured. In the Link2Care group we frequently discuss ways to minimize such problems.
After I got up the nerve to arrange for an evaluation and Mother was diagnosed with Alzheimer’s, I was invited to join the Link2Care online support group for caregivers.
That online support group was my lifeline in many ways. As I (like many caregivers) was house-bound for the most part, in-person support groups were not a feasible option for me. But with Link2Care I could check the messages whenever I had a free moment and jump up as needed to care for Mother with no fear of rudely disrupting a meeting. At any hour of the day or night I could post questions, share observations and concerns, and offer support to others who are dealing with similar problems. Members can even just “vent” their frustrations, fears, or grief and know that their words will receive sympathetic, knowledgeable and helpful responses from others who are also “in the trenches.”
The Link2Care website is another invaluable resource for information. It brings together caregiver and Alzheimer related articles that I would not otherwise have seen. In addition, there is a link called “Ask an Expert” which members can use to contact a doctor, an attorney, etc. and have their questions answered within a few days.
A caregiver must learn a tremendous amount of information. Earlier, I mentioned the necessity of learning to function as the parent of one’s parent, figuring out in a hurry how to effect this change without generating resistance and aggression. In addition, the caregiver must become knowledgeable about all of the loved one’s medical conditions—which are apt to increase both in number and in severity as time goes by; must deal with doctors and other medical personnel, accompanying the loved one (LO) throughout all appointments in order to facilitate communication and record all instructions; must be constantly vigilant, at home and elsewhere, for the LO’s safety, ever mindful that even the most basic safety rules are apt to be forgotten. In many cases the caregiver is also responsible for making complex health insurance decisions and managing all of the LO’s financial matters. This may simply entail balancing the checkbook and paying the bills and taxes, or may also include managing various sorts of investments. The caregiver’s job is definitely apt to include dealing with Social Security, Medicare and other government agencies—and those are daunting tasks under any circumstances.
The complexity of the caregiving task can seem—can be—overwhelming. Depending on the LO’s need for constant assistance and/or supervision and the caregiver’s own health issues, job and family responsibilities, the caregiver may have very little time and energy available for even locating the sources for all of the above information, let alone coming up to speed with an understanding of it all. Many of us would be unable to cope adequately without the various resources I have mentioned above. The Link2Care members frequently direct bewildered caregivers to the proper agency, information source or course of action.
I was much luckier than most caregivers. My parents planned well and saved carefully, and as a result I was able to focus on my mother’s care without juggling another job. As a widow whose children are grown, I was not burdened with guilt about neglecting my family responsibilities and I remained in good health and good spirits. I was able to have a substitute caregiver come so that I could not only do the weekly errands and attend an occasional class but even take eight hours off—for myself!—once a week and see my grandchildren.
I found it very odd that I used to get 16 hours off every day, plus weekends and paid vacation, and took that for granted!
Chamundi lives in Northern California. For more information about Link2Care, go to www.Link2Care.net.
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