Tag Archives: elder care

Don’t Fear the Reaper

Beyond being one of my favorite songs,  it is a sentiment I hold dear and feel the truth in.  

I have chosen to follow a path with my career in massage therapy that few are willing to endeavor into.  I work with the geratric population, and have for over 4 years. 

My husband has pointed out that many people go into caring for elders for the right reasons,  but few are able to stick with it. He also pointed out that often you see there are those working in nursing facilities because it’s a solid job,  not because that is their preferred choice, and those are always the first to take another line of work.
He told me just last night that it is a wonderful thing I do, because even though it is hard,  I continue to do the work because I recognize the need.   He’s not the first to tell me that.  In fact I’ve heard it thousands of times. Friends tell me, residents tell me I’m going to be so blessed because of what I do for them. Yet, I have trouble believeing it.

For me my work is just that:  providing a necessary service to a needy populace, of which I’m very skilled in providing and well  informed in handling aspects of their situation; mainly as a means to pay my bills.  It’s not physically demanding,  not mentally difficult,  and though it can be emotionally and energetically taxing- even draining at times – there are worse things in the world. I’m simply doing what I know I can and should do.  I don’t feel that makes me special. 

Beyond that,  there are days which I’d  rather not.  Be it I woke up already tired,  I am already slogging through my own emotional muck, or I know it’s a full moon and thus likely to be a horrendously difficult day,  I find myself saying: do I really need to go in today. 

Yet, I nearly always do. 

My days off have been few and far between.  I’ve taken 3 one week vacations for family in the 4 years, I took one month off for the birth of my son, and I can count my sick days using just my fingers. And I’m a contractor,  so there’s been no boss to enforce my attendance, no one to threaten the loss of a job for missing too much work. I simply know I need to do my work,  not just for my bills,  but for those that would miss their massages if I was gone. 

But there is something else that keeps me going,  keeps me helping.  I don’t know what to call it for certain.  I’ve had people reference being a Death Doula. I don’t know if I like that label.  I know that whatever it is, my mom had it too.

What am I taking about?  Well I have a sense of when someone is about to pass. My mom did too. She used to talk about how people acted and spoke before they passed away.  She’d said there were times that she swore she’d seen  a ghost visit someone and within days they’d pass.  There were hundreds of stories she’d told me growing up. She spent over 20 years working as an LPN in nursing homes, she had plenty of them. Most of her stories she knew that someone was within a week of passing, and a few stories she would tell,  people  were hours to a couple of days from passing  when she got the knowing. 

For me though,  it’s less reliable.  Maybe because I have less experience yet,  or because I see my residents less often (once a week, instead of daily). Regardless,  I still seem to have the sense. Though sometimes there’s a bit of a delayed reaction.

Often I find myself realizing after the fact that I’ve had what I’ve come to refer to as “the goodbye talk”, and usually anywhere from a few  days to 6 weeks after the talk, the resident passes.  I have numerous examples,  but some  come to mind more readily. Here’s a couple (for HIPPAA reg.s I’ve changed names):

My most memorable was a retired priest I’ll  call Fred. He never did want me to work with him.  Be it pride, or his training,  he just didn’t want a massage.  Every visit was accompanied by “go away” or “leave me alone” or fist shaking.  Once he actually made contact with my shoulder in the closest thing to a punch he could muster.  Most of the time he would eventually give in and let me work.  Finally one day after a good fist shake,  I sat down, and confession style told him essentially that I wasn’t going away.  I said that I  needed to pay my bills and I would give massages to him because it was requested.  Followed with “there’s only 2 ways out of getting my massages, and only one of them would be to move out of the building”. I didn’t finish the rest of the sentence,  because death was simply implied.

  One week later he passed away, the night before I was due to see him again.

Then there was Miss M. I had been seeing her  for 2 years,  unable to stand, unable to speak,  could not feed herself,  could not use a toilet,  every action was  provided to her. When I worked with her I had to rely on facial expressions to tell if I was using too much pressure,  and she could only take the lightest of touch.  I knew she was miserable. I always talked to her  when I worked.  Telling her what I was doing,  telling her about the weather,  small talk.  One day though I interjected  my perspective on her situation.  Telling her: I see you are always in pain,  & I’m hardly helping.  Your family will miss you dearly, but that’s inevitable.  Everyone greives when they loose family,  but it’s impossible to live forever.  If you’re in as much pain as I believe you are,  you should just let go.  You’re suffering will not make their greif any less later…. 

She passed away two weeks later.  

I think I’ve just had another talk like that.  Though I’m not certain.  My buddy Jim, I’ve worked with for a couple of years as well, and I’ve seen him twice a week for over a year now.  We usually talk about a lot of things including politics,  & I’ve done just about every other type of caregiver thing for him that’s possible. I see a lot of my Dad in Jim, and feel close to him like father-daughter. Well this week’s first visit was on a relatively good day when everything was going smoothly. Yet, when I got to him I suddenly felt the urge to go on a tangent politically.  Jim is a Republican but has said he doesn’t like Trump. Anyway,  I asked “Do you have a contingency plan for when everything goes to crap, because I don’t?” He said “What do you mean?”. I replied to the effect that both Trump & Hillary are out for money and that I highly doubted either one of them would do anything to help the American people,  but both would pass laws to help their businesses. I followed with that they would probably screw the financial system,  taxes, and medical system for the average joe because that would make them more money. & I explained that I knew people  thinking about heading to either Canada or South America & I had no idea what I’d do.  … He repeated several times “I’d never thought of it that way.” Then on Friday when I went to see him,  he was very low energy,  could hardly talk,  was saying he felt like he was dieing and couldn’t catch his breath.  Everything was hyper sensitive and he hurt everywhere.  It even appeared that he had blood in his urine when I helped him out of the restroom.  I spoke with the lead nurse and she explained they were aware of everything and doing everything they could,  and she reminded me that they were limited because he had a DNR on file.

Now, I don’t know for certain that he’s on  his way out.  What I do know is I’ve told him: “I’m not afraid of death.  I’m afraid of pain, suffering, lack of finances,  being homeless,  many things,  but not death.” I also know that I care for this person like my own dad,  and hate to see him in pain. I also know that the facility he’s in does have limitations in his care because of government regulations on pain medications and his own DNR.

 And with everything I  know I’d rather he find his way out/home as peacefully as possible, rather than continue to suffer. I hate more than anything to see another human being suffer. So it’s a bitter-sweet knowing that his transition is sooner than later.  

Does it mean I look forward to my job? 

– No.

Does it mean I hate my job? 

– No.

It simply is.  

Whether I’m Special or not.  Whether I’m different or not.  Whether I’m blessed or not (I have yet to see the blessings by the way). 

It just is.

I will continue to get up and go into my buildings multiple days a week,  weeks on end, years even,  until something spectacular changes my world and relieves me of my duties. I will continue to be there for those that need me, and say  goodbye to each of them in their time. It seems it’s just what I  do.

Blessed Be Each and Every One of Them. 

Cleveland: Family Comes First

We’ve returned from our trip to Cleveland. Everything went as well as could be expected, but it wasn’t the vacation and relaxation I had hoped for, being it was so desperately needed. C’est la vie!

Despite having a rudimentary knowledge of french, I feel that exclamation really does fit, life goes as it pleases and you just have to go for the ride sometimes. There is planning, but rarely do plans go as expected for me.

The drive to Clevo was sunny and warm, weather was fairly great for Northern Ohio in early March. We get there and Nathan’s parents were very happy to see us, but I was aware that they were stressed over something. We celebrated Mom’s 80th birthday by taking them out to a Mongolian grill restuarant, and the next day she treated the kids to the Science Museum. During all of the festivities, she was filling us in on Nathan’s aunt Lee- his Dad’s sister. Apparently, they were worried about her, because there had been a phone call from the phone company about her not having paid her bill in a while, and there was concern from both  Nathan’s mom and the other Aunt about things that Lee had been saying on the phone. Essentially they were worried about her state of being.

The day that we went to the science museum, they attempted to ring Lee several times to check on her, and every time they got busy signals, something that never happened previously. Late that evening, Nathan persuaded them to call and request a well-fare check with her local police.  The officers sent a social worker, and the lady called us back within 20 minutes saying that Lee was awake but confused, and couldn’t remember what year it was. The worker suggested taking her to the hospital to make sure she was physically ok. We knew that if they did that she would have no way home because she didn’t drive, so we insisted that the hospital speak with us before releasing her for that reason.

Once at the hospital it was decided that there wasn’t anything physically wrong, no diabetes or other issues that could cause confusion, so they suggested it was dementia. We again informed them that she didn’t drive, and no one was close enough to give her a ride home, so they needed to assist her with that if they were releasing her. They kept her until morning and had the hospital social worker give her a ride home. After a convoluted mess of legal requirements, we managed to get the apartment manager to check on her and the manager discovered all four gas stove burners on/open but not lit. The manager was extremely concerned because that could have blown up the building, but she needed us to get written permission from Lee to speak further. When all was said and done, Nathan and his parents jumped in the mom’s car, drove 6 hours to West Virginia, picked up Aunt Lee, grabbed as many clothes as they could fit in the car, tried to get her important papers, and brought her the 6 hours back to Cleveland. Once that happened, it was very evident that her confusion was not new. After supplying the consent letter, the apartment manager filled us in that it really started showing about a year ago, and that since then there had been many lapses in memory including paying rent 3 times one month, and forgetting to 2 other months, and that her neighbor had been feeding her because she was forgetting to go shopping.

During that whole mess, I was left in Cleveland with the kids, and Ian was not happy that his daddy left and wasn’t going to be back before bedtime. I had a melt down from the crazy mad child I had on my hands. Needless to say, I was very relieved when Nathan and family returned.

The following day was spent taking care of Lee. Nathan (because of the 12 hours of driving) took a nap while I worked on packing the van back up for our return trip home. It was very evident to me that Lee was no longer what is called “High Functioning Dementia”, she was very much the opposite and needing care. Nathan’s dad, her brother was shocked, unfortunately I wasn’t- I’ve seen this before, and it’s much easier for me to understand how something like this can seemingly sneak up unnoticed. I sat Nathan and his mom down, and tried to see if there was a game plan. I kept repeating “Family Comes First” if you have nothing, you have family, even if you don’t agree, and even if you don’t always get along, you will always have family.

In the end, the game plan was that they would figure out how long there was to deal with Aunt Lee’s apartment and straighten her finances out, and then if needed Nathan would be sent on greyhound back to West Virginia to physically deal with things, and possibly even rent a U-haul to take her belongings to Cleveland. At this point, they have figured out that we have until the end of April to do that. The details have yet to be figured out.

This whole situation makes me think though. I work with nursing homes, I see how they function, and even the best of the best and most expensive still lack individual care. Things get missed, people have to wait for simple things like using the restroom, showers are given twice a week, and don’t get me started on medication policies. If a resident refuses medicine, it is crushed and put into food or drink, and a resident can not make their own decisions to eliminate medication. I have literally had residents that were on just enough diuretics to keep their lungs from filling up with fluid and drowning them; they weren’t comfortable- they were miserable, but the medicine kept them alive. I’ve had Lewy-Body patients that couldn’t talk, couldn’t move, were stuck in a wheelchair or bed all day, couldn’t feed themselves, and couldn’t even sit on a toilet anymore, but they were on enough medicine to keep them alive longer, but not enough to kill the pain. I would sit with them giving massages to try and help the pain, but I could always see it in their eyes and on their faces. -Which, by the way, my services are out of pocket expenses, they are paid on top of the thousands of dollars per month of nursing care.- I’ve had 3  residents live in that exact state for over 2 years, with me visiting weekly to attempt to provide any relief. Can you imagine spending 2 years unable to do anything except suffer! IT disgusts me, because I thought the creed of western medicine was first do no harm- how is suffering for 2 years no harm.

If it were my choice I would not put anyone in mine or Nathan’s family in a nursing home.You can drop 50 grand a year and still have your loved ones miserable. I much prefer home health, and suggest it at every turn, so that is what I did with Aunt Lee. I said she should stay with Nathan’s parents as long as possible, and I sincerely hope that it’s long enough for me to build enough space for all 3 of them to live in. That way I can help them live as healthy a life as possible, and if they should get to a point where they can’t do anything and are suffering, eliminate all drugs that would just prolong that suffering, and encourage doctors to dose enough pain medicine to at least remove that portion of the suffering. There is no medicine that gives motor skills back, no medicine or surgery that can help someone be able to eat or use the bathroom once it has been lost; so that type of suffering is sometimes inevitable, but at least we should eliminate the pain. If you can’t change anything else, at least prevent prolonging the inevitable, and kill the pain- that is possible and available if doctors are made to care. Too often the nursing environment causes medical staff to quit caring. They see too much complaining, too much dysfunction, and they become numb to it thinking that everyone is just being grumpy and exaggerating, and too often will not supply more pain meds unless the family demands an increase. I get that our society currently has an outbreak of pain medicine abuse and addiction, but I will be the first to tell you that if you are in REAL pain, your body will gobble those meds up trying to quench the thirst of chronic pain. Yes, sometimes it is an insatiable thirst that won’t diminish regardless of how much medicine is given. I had one nurse tell me that if they gave a particular resident any more pain meds it would be too much for their liver and eventually kill them, but the alternative is allowing a living being to suffer PAIN daily under your care. I wouldn’t want to be the one responsible for keeping someone alive in a state of suffering, but of course that is one of the many reasons why I didn’t go into nursing to begin with.

It doesn’t matter if that pain is from Fibromialygia, Lewy-Body, Congestive Heart Failure causing your legs to be 2 or 3 times their normal size, collapsing vertebrae from severe osteoporosis, or any number of other real medical causes, No-One should have to live with chronic pain for years on end when we have the tools to handle it.That’s my somewhat educated and compassionate opinion, and I’m sticking to it.