What would have helped you most in your role as caregiver?
To have had the representatives with whatever ‘agency’ that I have dealt with to explain things to me as the ‘dummy’ that I was in the beginning of my role as caregiver for my parent(s). And for these reps to have explained what I should expect with future dealings, i.e. the next steps in those processes. This would have saved me the following: many unnecessary phone calls, my having to ask many extra questions due to my lack of understanding, extra miles traveled all the added stress, etc., etc.
A couple of examples:
1) It would have been ‘nice’ if the representative with the Social Security Admin. Office (closest one to me is 50 miles) had found it within her job duty description to tell me (when I called ahead before going there) that they close at 3 p.m. daily AND that I would benefit from making an appointment. Then I would not have gone there one day to find them closed and again the next day to find that it was best to have an appt., therefore having to wait over an hour for assistance (I wasn’t going to budge that day!!). Luckily, the gentleman that assisted me explained things well and told me what to expect as things progressed. This was the day that I visited the SS office to tell them that Mom had gone into a nursing home, change her address, and enact myself as her representative payee.
2) Seven years ago my 80 some yr. old Mother and I went to our initial appointment with the Medicaid case worker. We both came away from that appt. feeling as though we were in a completely dumbfounded fog. Having been given that much information in one sitting anyone would feel as we did. However, in addition to the fact that no one could expect to understand it all right off the bat, it was obvious that the case-worker was tired of having to explain and/or unable to explain in layman’s terms the process (which we so desperately needed). As the process progressed, this poor communication on the rep’s part left us with-- many instances where we had no clue as to whether we were doing things correctly or even on time; worried and scared that we could get into some kind of legal trouble with the state due to our ignorance; being afraid to but having to make many phone calls to her to ask ‘dumb’ questions that were answered by her in her usual poor and ineffectual manner. Luckily, after several years of ‘exposure and practice’ things with the Medicaid process have worked out fine, but only with much unnecessary stress!
Trust me, I’m a 25 yr. RN/veteran of the medical field, and I know how tired and frustrating the Medicare, Medicaid and medical systems are to work for or with. But we don’t do anyone or any process justice by not caring enough to make sure things are clear right from the beginning and helping our patients and clients to plan ahead.
3) I feel it would be much more efficient when one goes to the Soc. Sec. Admin. to inform them of any mandated changes, if all agencies connected to Social Security/Medicare would be alerted (by THEM or their system) of the changes as well. I mean, come on, all it takes is a universal computed system, duh.
For example, what I have had to go through with Medicare Part D just to change Mom's address to her nursing home address has been completely ridiculous (especially when I have every form of power of atty., am her rep. payee, and have been co-owner on all of her accounts for a long time, and the nursing home and pharmacy are the only ones actually touching her medications. I really want to cuss right now!!!). Ideally, I wanted all of her mail to come directly to my address but nooooooooo, that would have been even more difficult.
What would you have changed to make your "job" easier?
1) When parents become unable to care for themselves their children should not be able to fully’ divorce’ themselves from the situation and leave another sibling to do it all.
It appears to me that filial laws are designed to even punish the actual caregivers (when the caregiver just can’t do it anymore). I’ve not been affected adversely by these laws other than the looming threat that no matter how exhausted and ruined I became I had to keep being it ‘ALL’ for my mother. These laws should be designed to be protective of actual caregivers and force any able-minded and able-bodied siblings to at least take on portions of the task. The presence of and awareness of this re-designed type of law that mandates all children in a family to do their parts for their parents would help with many aspects. I realize what it is like to have a parent that makes her child’s life unbearable when it comes to being a caregiver. I know what it is like to have siblings that are hands-off where helping is concerned. Based on that experience I don’t believe that adult children should be able to make one sibling shoulder it all or even most of it when the going gets tough and the elderly parent can no longer be responsible for themselves. If, for justifiable reasons, it is impossible for a child to be physically around the parent there are many other things that they can do as part of the family team so that each caregiver can survive much more intact.
2) There has long been something that I have found to be a complete wrong-doing (should have been against the law) by insurance companies. Long ago people bought long-term care policies only to find that now these policies do not actually cover an assisted living. Two points to consider—1) Medicaid considers an assisted living to be ‘long-term care’ and 2) nursing home care is much more expensive than assisted living care.
This is one more affront to consumers allowed the insurance companies. This should have been regulated by law as this refusal by insurance companies to pay for assisted living was taking place.
I will share my thoughts on Mr. Gamble's next question later after I’ve had time to think about it and put it together. Right now the brain is drained! And now I must go on with continued/never-ending arrangements to fully become my mother’s representative… even when years ago we enacted the powers of attorney (medical and durable), and had me co-sign on her accounts. Sheesh!
I hope someone can benefit from this. It's been a good vent. Please, forgive my grammar and punctuation... being good a these has never been my forte’!