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.

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