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My Mother Did What?
Written by Steve B.
Thursday, 04 November 2010 00:00
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My sister and I have been trying to help our parents age with dignity and to maintain as much independence as possible. During this endeavor of many years my mother has been diagnosed with Parkinson's Disease and my father with acute arthritis and a long standing heart condition. Although they are not destitute, they are of modest means so we have tried to make the right decisions the first time around to help minimize expenditures. 

My in-laws are somewhat younger by 10 or 12 years, and although my mother-in-law is in good shape (she has had knee replacement surgery on both legs) my father-in-law has been dealing with diabetes for quite some time. For the last 3 years he has been on dialysis and late last year he was able to have a double transplant. He was doing quite well at first but then a number of complications set in and he ended up having a leg am****ted.

In the meantime we lost a number of uncles, our family dog of 15 years passed on, and my young children had some difficulty dealing with all of this death, disease and hospitalization. Then to add to my stress, the company I worked for was purchased by a large health care organization and all the employees were laid off despite their assurances that “everyone will have an opportunity to have a job”. (I guess they forgot to mention that the job wouldn’t be with them!)

nOver the last year and a half my absolutely wonderful wife has prepared food every weekend for my parents (as their conditions worsen it is becoming more difficult for them to do things for themselves) since they were not particularly agreeable to Meals On Wheels and other similar services. My mother\'s Parkinson\'s has become so acute in the \"later stages\" that she has been having terrible bouts of dementia, which required hospitalization from time to time.rnrnTo say the least, things have been difficult, but with the onslaught of the dementia all our lives were to take a new and even more stressful turn.rnrnThe dementia appeared in the form of acute paranoia. She would refuse to take her meds or she would accuse one of the caregivers (these individuals were truly angels with hearts of gold) we hired of doing something outrageous. Her dementia progressed to where she would accuse my sister or myself of trying to poison her (through her meds) and even worse! (I can’t even talk about the other things that happened. They are just too painful to revisit.) We were aghast, not sure how and why this was happening! Although we felt the specialist treating her Parkinson\'s was doing an excellent job, we were never warned of the potential for dementia nor did any of the research we compiled on the disease mention this possible (apparently probable) side effect.rnrn==============rnrnJust prior to her acute dementia both she and my father were going to move into an assisted living facility. My sister and I spent many months researching and visiting facilities in the general area. We found that they were expensive and, when looking really closely under the covers, not very well suited for non or semi ambulatory residents. My parents would need assistance for things such as going to and from a common dining area for meals, administration of meds, etc. Not such a difficult problem because most facilities would accommodate for this. The issue was what would they do when they were not at meals? Would they stay in their 9x12 foot room and watch TV and make popcorn in the microwave? Most assisted living facilities assume that time will be spent in common areas or occupied with endless hours of activities. Of course if we wanted a bigger room we could certainly opt for a 12x18 room or even larger at a considerable increase in cost! (the national average for assisted living is said to be from $1500 to $5000 or more a month) Oh, and by the way any state or federal assistance programs like Medicare, etc. do not cover assisted living, so if you don’t have private insurance, that covers it - you are on your own. So now after experiencing my mothers dementia and fearing that she would hurt herself or someone else she was admitted to a not so nearby hospital for observation and treatment. This hospital apparently has an uncommon Geriatric Psychiatry ward that specializes in different types of dementia and other ailments of the mind. After being assigned an attending physician and “treated” for 4 or 5 days she was released. At the time my sister and I did not know any better. My mother was literally “set free”, i.e., cast adrift. There was no hospital release plan, no meeting with physicians or any medical staff. What were we to do now? Was she cured? Will she experience more dementia? Do we need to address any specific areas to ensure her well-being? rnrnWhat we were told right after she was admitted to the hospital the first time, was that we should apply for any and all assistance programs because these types of conditions require a lot of care and can be quite costly. We all live in the state of California and so we were directed toward a State aid program called Medi-Cal. How do we know if they qualify? Hmmm, talk to a case worker from the agency that administers the program, we thought. Well, case worker is not the best title for these folks, but rather unsavory salespeople or, probably more appropriately, fraud investigators would suit what they do better. They treat you as if you already broke the law and are extremely adversarial.  I can certainly appreciate the State not wanting to pay for fraudulent claims, but trying to receive a straight answer from these folks is the same as asking a politician to give a direct answer to a direct question – it isn’t going to happen!

When we did contact a case worker we were given the basic (incomplete) facts about who and how one qualifies. In doing my own research and talking to accountants, lawyers and Medi-Cal specialists, I found that they in fact did qualify, which was contrary to what the case workers (fraud investigators) told us. We were also reminded quite frequently (I must look pretty dark, dangerous and desperate because I never asked for or implied that I wanted more than what would be allowable by law and policy) and with pretty threatening language that we would be prosecuted and imprisoned if we tried to defraud the State. (That was stated in more diplomatic terms on the application forms that required signatures)... more in the next installment… - Click here!

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