Tag Archives: elderly

Long week.

It has been a long week, dad was released to my custody on Sunday after a short lunch visit with my mom. They are divorced so she’s off the hook, but offered to help some if I needed. I told her thank you and explained I should be okay for now, but she gave me gas money anyway.

Packing him up was a challenge. His RV trailer home is full of mold (mostly on walls so probably due to ceiling leaks) and smells like urine from prior incontinence problems. I was quite distressed over the state of his living quarters, but did my best to ensure he had everything he would need for the short term. I even tracked down vehicle titles to help make sure insurance processing happened. Then we drove the 5 hours back to Kansas City to arrive at midnight Sunday.

I settled dad into my revamped office, now fitted with a twin bed and shelves for storage. Monday we argued over doctor forms, and he threatened to flush pills down the toilet. I didn’t punch him like our move after I married Nathan, instead I felt sad for his denial of fixable things and the obvious nature of his choosing to die. He eventually apologized for making things difficult and said he would try not to do that again.

Nathan and I have both had to help him with toilet trips and Nathan took the lead on shower assist. We have both helped him change clothes.

It’s not that my dad doesn’t understand those things, it is because he is holding so much fluid from congestive heart failure that he is having difficulty with range of motion needed to complete the tasks. The fluid is also causing difficulty breathing even after short tasks like walking to the bathroom. Today he was able to do restroom visits alone and even got his shoes on by himself. However, he is pretty much sleeping the day away- every day.

There are moments that I wonder if he’ll even make it long enough to move him to my sister in Arizona. Then there are moments where I think he has a chance to pull up if he wants.

Ultimately, I know it is between him and God, and I just feel like he is demonstrating that his scale is leaning towards a desire to check out and meet his Jesus. There have been hours of conversations to that effect, and far fewer conversation moments of the things he wants to live to do.

Regardless, I have had to pull back over and over again. I stepped up and took responsibility when my siblings were unable to meet immediate needs. I love my father, but simply can’t be like him anymore. So I have chosen to focus on him getting whatever God sees as his dominant vibration. Whatever my dad wants in his dominant thoughts, needs to become clear and manifest easily. I am intelligent enough to know that I can not change his mind, but the compassionate side of me wants a quick solution to minimize his self-inflicted suffering.

Beyond that the extreme negativity has threatened my happy space, so pulling back has been a necessity to keep myself buoyant. I finally have found my ability to be somewhat selfish. At least selfish enough to keep my mood mostly intact. I still conceed other things regularly, but my mood is vital. I simply can’t afford to let that slip.

May you have moments of clarity and find a way to help those that don’t wish to help themselves. May you be selfish enough to keep your mood and your own personal necessities intact. May you find a way to love your parent(s) even in challenging situations. May you know how to let God work miracles. May those wishing to die get their speedy painless exit.

Siva Hir Su

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. 

Drop Grandpa Off, he’ll figure it out eventually.

So when did this culture we live in decide that if you are feeble, weak, or ill (of any age), you should just be shoved into a care facility and be forgotten about? Better yet, why?

The group of people I work with are all feeble, weak, or ill. They however they are not necessarily incompetent to make decisions. Some of my dementia patients might not be qualified to make decisions regarding their care or medication, but even most of those could tell you what belongings they wanted to keep and which ones could have gone to their family. Because when I’m working with them, that is usually the topic of discussion. Why did they just leave me here with this stuff? They could have kept that china hutch, or that chair or gotten rid of my button up shirts, but I really wanted my books or my photo albums or my pull over shirts. I’ve had thousands of conversations like that over the last 4 years.

Why? Because our society has made it OK. When Grandma gets too old to cook for herself or keep her house clean, it’s now OK to just take her out for the day, while movers and/or other family pick and choose what gets moved into the nursing home. Then when the day is over Grandma gets taken to her new apartment to never leave again.

I know this to be true because I have witnessed it over and over again. In fact in over 4 years I can count on my hands, the number of people that have told me they willingly went and told their family what to move for them or what to do with what didn’t get moved. That’s out of 8 nursing homes and 4 years of service. Wow, just wow. It boggles my mind.

I have worked with people from 45 to 108, and almost all of them were dropped off without any consultation. They had no choice, no say in the matter. They didn’t get to choose what building, what services, what clothes to take, or what furniture to take.  I have had a very few that were able to persuade their families to make changes after the fact, but even that is rare, and usually related to facility concerns, not necessarily belongings.

Why? If someone is having trouble physically, but their mind is still mostly ok- WHY on earth, WHY doesn’t it get put into certain terms and laid out in a way that Grandma or Grandpa can provide their two cents worth. Is it really that hard, or is it that families just don’t care about their supposed loved ones anymore?

I simply don’t understand why children or grandchildren can’t just sit down and explain: “Look, you are having trouble, we want to help, but can’t do it ourselves. We’d (like for/insist that) you to move into a building that can help, and we want for you to help us decide where, and then what you wish to do with all of your belongings. Which ones to take and what to do with the rest.” Is that really so hard?

Beyond that, once the initial decisions are made, it becomes about the family makes all decisions, and never consults with what grandma wants. I believe that when someone crosses the bridge into managed care (of any level) a solid discussion about living and death should be discussed and documented into wills. I have told my husband already (I’m 33) that if I am ever in a state where I can’t feed myself, toilet myself, clean myself, or talk- that I want all medications except pain killers removed, and pain killers to be increase until there is no evidence of discomfort- at any cost or risk of side-effects. I have yet to document it in a formal living will, but I am set on doing so. Yet hundreds of thousands of elderly are in just that state and their families keep allowing enough blood thinners, heart meds, and psych/dementia drugs to keep them alive and in that state. I  sincerely believe that that is essentially pure evil disguised as ignorance and apathy.

Sadly, most of my people are elderly, however, there is a group of younger disabled people that are dealt with the same way.  IF their family believes their plight, they get shuttled away and ignored because they are simply too much to handle or deal with. At worst they are being selfish, or are simply labeled as hypochondriacs, which is even sadder because if I’m working with them, then that is so very far from the truth. It boggles my mind how families can now treat each other with such blatant disrespect. Children to parents, parents to children, brother and sisters. I just simply don’t understand it.

This topic probably bothers me so much right now, because my family has done so with me. They have written me off, either because I married an older black man, or because that man then had heart trouble that resulted in financial trouble and I didn’t leave him. Either way, it disgusts and utterly frustrates me. How can people be so heartless with their own family, their own flesh and blood? I simply just don’t understand.