I wasn’t sure where, how to start this. I wanted to somehow inform others, the world what we go through on a daily basis. My ‘plight’, for example is a long, painful , perhaps agonizing one that never seems to end. Much of it is because of things that are out of my control, hence unresolvable. In the past this was never the case, personal struggles would enter my life and would be figured out on their own or I would figure them out. Writing this I’m thinking of times when I heard, or read things like ‘life gives us that which we are able to contend with.’ I surmise this happens when we are, perhaps less of an adult, not mature enough to deal with the hardships given us. I feel like I never was, until recent years, as a middle-aged woman.
I want to share my plight,things that I am in some ways embarrassed. but some things I have shared with only my closest friends (and even feel a bit awkward about that).Some things I have posted in social media but not of my ongoing-never-ending struggles I’m also hoping it will encourage others to share their troubles and hopefully in doing this we can help one another. I’m not trying to get attention ( well, maybe to the right people) or engage sympathy; I guess in posting for all to see is in some ways therapeutic and may provide me some answers.
My mother died suddenly in 2000 and at the time I was living with my parents; my Mom was still working at age 66, or, actually seeking work ( she had been an occupational health nurse) as she had been laid off , or had her hours cut to part time from a position she’d had for many years. She still wanted to keep working. I was an immature, single woman in her 30s, still living at home. She had collasped form a brain aneurism and was in the hospital for a week before my father decided to have her taken off life support, without my knowledge. I wasn’t handling it very well, I remember feeling spaced out and saying off-key things.
My father had developed Multiple Sclerosis some 15 years previous and at the time was retired but still functioning independently. I do remember him being in a wheelchair for my mother’s interment but he was still driving, doing errands, going to appointments don’t the exact year I had to determine he could no longer drive, being in his 80s and with the MS it would come in due time. This meant all his errands, going to Walgreens with his clipped coupons from the Sunday Boston Globe, weekly and taking him to his appointments, occasionally out to eat with the family for birthdays, Holidays and family friends.
At this time he could walk down the front stairs to the wheelchair to take him to the car and there came a time when he know longer could. There was no way to get him out of the house to his appointments, or anywhere. I remember my cousin and/or my nephews carrying him down in the wheelchair but it was difficult as even in his 80s he still had the weight of an average male…( and counting due to dome good home cooking). I contacted every agency, outifit…whatever to find him transportation but few, if not any would not get him out of the house, they only provided transport for those who could actually get to a vehicle. Chair cars and ambulances were( and are) very expensive.I finally contacted one agency who sent a nurse to evaluate my dad’s situation in the home and getting him out when necessary. She insisted we take him out and down the stairs and to the car. So, she and I got him down the stairs ( in the wheelchair) and into the car but we could not get him back up the stairs on our own. I remember telling her this would be the case ( my Dad had protested, too) but she insisted..and she ended up having to call the EMTs. Needless to say it was November and the first cold day of the season and my Dad hadn’t been spending much time outside. He must have been outside twenty minutes to a half an hour in chilly winds while this nurse tried to figure out what to do ; she also was saying how her agency wouldn’t be able to help us. I thought my head was going to pop off. I do remember calling the agency afterward only to get a similar response.
I finally had my father sign on with a Doctor who does home visits through Boston University/Boston Medical Ctr Geriatric program. This worked well for us , except his office sometimes called close-to-last-minute and say he would be coming in a four hour window. This wasn’t convenient for me as I was working at the time. There were times when I had to get my father to an ER and in the past I had taken him to Mt Auburn Hospital in Cambridge since that’s where his Doctor was and with whom had a long family history. Other times the EMTs would take him to St. Elizabeth in Brighton since it is the ‘local’ hospital for where we live. After we had signed with the home-visit physician we were more or less ‘required’ to go to Boston Medical Center as this is where the practice was. I did have my Dad taken there, once and was very uncomfortable, especially in the ER since it appeared to be filled with street people. This may sound intolerant but it just wasn’t a hospital situation I was used to. My anxieties welled up and the wait was long and I didn’t stay.
In a sort of ‘protest’ move the next time my Dad had to go to the ER, I had him taken to the local hospital. . It’s cleaner and very time I’ve been there I havent’ waited long. I didn’t want to deal with, or have my father deal with that, again. I remember visiting Dr’s nurse calling sounding not very happy that my father hadn’t been taken the BMC aand I told her why; she said there’s a homeless shelter right next door to the hospital. ‘Oh’, I said.
I mentioned that I was working, at this time, I had a part-time job working for a large popular retailer. I had hired private care for my father to stay in the house with him, prepare his meals,assist with bathrooming, etc. Unfortunately these individuals proved to be very unreliable and I was tardy and missed some days, eventually resulting in termination.
So, I was jobless, again. this was around 2013-14 and I had spent the last few years in and out of jobs after a lay-off from the full-time, benefited job I had for nearly twenty years.It was a horrible job , the department I was in had a barrage of managers who didn’t know how to manage ( people)and I had difficulties with some my co-workers.But I stayed, never got a promotion, only lateral transfers. My performance was never exceptional and began to decline, I think due to the death of my mother who I was very close to and later on in 2007, the sudden death of my brother. Close to the time I was laid off I was being disciplined for poor performance, missing work, tardiness. It was very difficult being disciplined by people who treated their employees badly in the first place and by the rep from HR who knew of these issues. The lay-off was a relief.
Little did I know how difficult it would be to find a job afterwards and explaining all the gaps in my resume. I was told it was okay to put in I was caring for my elderly father at home. I’ve had a few temp positions in the same field as my aforementioned position but none led to permanent positions. It then came down to me finding something part-time where I could care for my father and have someone in the home to help him while I was working. That all fell through not just because of unreliability but also because of cost.My father is one one of those people who ‘falls between the lines’ of being eligible for State care but doesn’t make enough to pay out-of-pocket.This caused a lot of frustration.
I often needed to be away from the house for some semblance of social life, to do errands, whatever. I would often be gone for hours at a time and my father would be fine even though in previous rehab stays I had been told my father needed twenty-four hour care. When I was home with my father I catered to his every need and he is a very demanding person. Nothing could be waited for, things that didn’t need to be done immediately. As a result, I developed anxiety. I couldn’t leave the kitchen where he stayed with the tv without him hollering for something.When I was away from the house there were constant, unnecessary phone calls. I would often lose patience with my father, I was very short-tempered and have been caught by neighbors and my sister who chastised me for doing so. Well-deserved, I suppose but she stayed with him a few times and experienced what I do on a daily basis.
Each hospital and rehab stay I cant say I dreaded my father returning back home. He really disliked the rehab/nursing homes, the food was terrible, (he was used to good, home-cooked meals) and care sometimes much-to-be-desired, especially for a man who demands everything now and waits for nothing.I didn’t want him to have to remain in such care situations, d espite the freedom I had while he was there.
That day did finally come when my father was hospitalized and put into rehab, the decision coming down that he could not return home.Now came the frantic search for adequate long-term care as the place he was staying, at the time didn’t have any long-term beds available. I visited a few places and hey were very nice, places I could even se myself staying with private apartments, gardens and picnic areas, activities, etc. But these were all assisted living and I somehow couldn’t connect with facilities that gave the comprehensive twenty-four hour care my father needed. It turns out my father fell ill, again while in his rehab stay and returned to rehab and remained there.
In the meanwhile I had met an agency and elder care lawyer provided by the rehab nursing home where my father was staying. They informed me of the options we had in order to pay for his care which included paying down all my father’s income and assets to two thousand dollars and under, then he would be eligible for MassHealth to cover his care.
From May/June 2016 until now i have been asked of and required to acquire all his financials and assets and forward all to the agency who then forwarded it to MassHealthfor application. Every time I think I’m done, there was something else being requested, or I forwarded the incorrect information.In the mean time I had to end up paying the nursing home $40,000 which was most of a death benefit that my mother left to my father. The remaining funds were put into a Trust to be used for my father’s needs.Once my father dies anything remaining in that Trust will go to MassHealth.
In the last week or so I have received correspondence from MassHealth, since my father was finally approved saying that the nursing home will be billing us $4500/month. A week later I received another bill from the nursing home for $25,000.My father’s monthly pension is @ $3900 but the agency we’re working with had federal taxes stopped so his income would be @ $4300/month. With this information they established he should pay the nursing home $4500/ month. On what planet, I would like to know. the utilities, other bills have been coming out of his income and myself, with barely being employed, with a miniscule income has no way to pay them. I have been beside myself and these new financial issues only chose to reveal themselves less than two weeks before Christmas. My representative from the agency says ‘ these charges have to come from ( my father’s ) income. I want to keep saying to her, ‘Honey, you can’t squeeze water from a dry sponge..you can’t take something form nothing’.
All along there has been the idea of selling the house, my father’s home that he grew up in, that his parents bought when they came from Barbados some ninety years ago. When I first moved into the house with my Dad ( moving back after renting it out for many years)
I loved being in a family home and thought I could never give this up. Alas, over the years the house, as all houses do has fallen into disrepair ( should I say ‘despair’?) and despite all we’ve had done there’s some much more and that, yes, indeed costs money.Now I long to be out of this area, this nice neighborly neighborhood where generations of families who lived here when my Dad grew up here..still live here, where it’s convenient as all Hell to get anywhere by public transportation or car but it is ‘Urban’ and it is Boston. I’d rather be in a nice, clean suburb, is what I always tell people, near woods and not busy thoroughfares.But I don’t want to be forced to do it, I want it to be my decision. I might not have a choice in the matter…but maybe more resolved.
susanbwrite 