Since January, our hospice staff has been faithful and professional, and I'm so grateful to them.
It has only recently dawned on me, however, how lonely the struggle (this word is not an overstatement) can be to find the right sources to fill gaps in my mother's care. As a former geriatric social worker, I wasn't prepared for the frustration this would bring up for me, now that such care is a personal issue.
Suggestions from friends. Calls placed. Calls unanswered. Calls placed again. Services promised, but never delivered. More unproductive referrals, which lead back to one's starting point.
The application for Medi-Cal has begun, and it's proving to be a long and complex process. Still, it's a necessary first step. There were some initial glitches. After putting in an internet application, I was told by an IHSS staffer that I shouldn't have done that, and was advised to cancel the application; a phone application to IHSS was sufficient to start the process. A follow-up from another IHSS worker contradicted this, and I was then told to reapply.
In the meantime, I'm being given facile advice to "just take out a reverse mortgage." How easy this seems when it's not your family home of almost 50 years on the line! Others advise caution before taking this step. In fact, AARP Magazine printed such an article just recently. I also get asked daily from various case workers and staff to "just try" hiring a private-pay caretaker, even when I express concern about cost concerns. Many people seem to be pushing their own agenda, or trying to quickly sell me their services, or those of "a friend who needs work." The need to carefully interview anyone, and present them as a trustworthy and consistent person in my mother's life seems also be lost on a lot of these people.
Acting on a suggestion by a family member, I called a referral service almost two months ago, seeking to get as unbiased information as possible about in-home care through In-Home Supportive Services versus placement in a skilled nursing facility. After just a few minutes of conversation, I was told my mother wasn't eligible for their services, but certainly "this other place can help you."
Fine. I called Agency #2, and had to follow up twice. After the second message, I got a return call, and gave clear details about my mother, our available resources, and the care options I was weighing. I was told that a mobile physician would be calling me back "soon" to arrange a home visit for assessment, and this in no way would conflict with the hospice service or physician we want to continue to have in place.
Two or three weeks later, I was contacted by Agency #2, and told them that no physician had ever contacted me. I'd given my cell phone number, because, gee whiz, I'm just stuck with being my own secretary. So, a follow-up was promised, and still, no doctor called. In the same conversation, Agency #2 gave me the name of Agency #3, and said they "would call me." Agency #2 was now saying Mom wasn't eligible for their help, which they might have said in our original conversation.
At another two week interval, and no word back from either Agency #2 or #3, let alone any mobile physician. I researched Agency #3's phone number online (they have sites both here in California as well as Nevada), and called. Again, I believe I clearly communicated the situation, and now I was being passed along to someone at a hospice, even though I told them we were totally satisfied with our current one.
This time I actually got a call within the day, but found myself talking to someone who said, "I was told you're not happy with your hospice, and want to change." Even though I again gave the details of my goals to meet my mother's needs, I felt I wasn't being heard. At that point, my patience ran out, and I told this particular individual, in no uncertain terms, that I felt shuffled around by the system. (Indeed, is there any kind of "system" in place here?) End of conversation.
I called Agency #1, bluntly voicing my disappointment in lurid detail. As I recall, I used the word "idiot" to describe the caller from Agency #3. Too bad it was only heard by an answering machine.
Back to Square One. Here ends my rant.