Actually today is more of a Thoughtful Thor’s Day. It’s rather gloomy, gray and chilly outside which means I’m limited to inside stuff today. I can’t say that really excites me much but then again I don’t do a whole lot when it’s sunny out either. I realize that part of the problem is my own focus and initiative. It’s difficult to become excited about anything when I feel like such a prisoner. The situation is getting worse and I don’t know what to do about it. Maw Maw (the mom-in-law) becomes so agitated sometimes that it’s impossible to sleep. Very often we’re almost asleep and she wakes up. Then one of us has to get up with her because she starts touching things like the stove or trying to open the front door. This results in both the hubby and I being sleep deprived and exceedingly cranky. Putting her in an institution is a last resort to both of us but I’m afraid we might be reaching that point soon.
This entire situation makes me wonder at caring for the aging in this country. So many of the resources available are limited and/or difficult to access. In many cases we’ve been told that because she is not on Medicaid she’s not eligible for free services and she doesn’t have enough income to afford the paid ones. I’ve seen this time and time again with friends whose parents are in similar situations. Nursing homes or senior facilities are costly (ranging from $1500 per month to $6000 per month in this area) and also tend to be few and far between. this means if we want to visit her it would take an hour drive to get to most of these places. We’re also very hesitant to place her anywhere because her mental condition means she has no ability to communicate if someone is hurting her.
I’ve never been under the illusion that life is fair. However many recent experiences have made me question our societal obsession with staving off death as long as possible regardless of the consequences. I’ve seen many people caring for elderly parents who take them to the doctor or hospital for a variety of reasons. The hospital is able to stabilize the parent but not actually heal or cure them. As a result the parent is often either back in the hospital again in a few months or given another batch of medicine to “help” whatever condition the doctor believes he or she has now. Maw Maw would probably be taking 10 pills a day if her doctor had his way. He means well but he doesn’t truly know what is wrong with her and seems to believe that if he keeps giving her medications she’ll eventually find one that works. It seems to be an all to common approach to healthcare in the US.
I’ve had several friends and neighbors battling various forms of cancer over the past few years. It amazes me how painful and ultimately unsuccessful this process appears to be. So often they believe they caught the initial cancer only to have it spread to a new area a few years later. It’s almost as though the treatment actually accelerates the grown of the tumors. I know the professionals state this is not what happens but from a layman’s perspective this is how it appears. I think some of the miscommunication stems from the fact that for a doctor prolonging the patient’s life for another 5 years is a victory. To the patient it just seems to be a long and painful battle that they ultimately lose. I know some people do live for over 10 years after treatment for cancer. In fact Maw Maw was diagnosed with uterine cancer back in 1981 and beat it, remaining cancer-free for over 30 years. I would also never try to influence someone else’s choice for treatment. That is a personal decision and something that needs to be left to the patient and her/his doctor. However it makes me wonder what I would do if the situation ever arises (although I hope it never, ever does).
Wow a gloomy day really seems to bring up gloomy thoughts. Of course my current situation doesn’t help matters any either. It’s hard to be cheerful when your life has become a relentless deathwatch with no end in sight. It also points out to me how much I rely on external distractions to keep me from focusing on negative things in my life. In the past, my salary allowed me to buy books, Tarot decks and dolls (among other things) to keep me from realizing how unhappy I was with my job and other aspects of my life. I’ve been rather slow to develop other coping skills. I’d prefer to avoid the matter entirely and just zone out in front of the television or read a book. I can tell that’s not going to work much long either.
To gain so clarity about this situation I asked the Tarot “How can I deal with this situation in a more healthy manner?” I used the Dark Carnival Tarot and drew The Moon.
The companion book offers a very contemporary and urban interpretation of this card, referring to blood moons, treacherous paths and ready to put a garden claw in the face of a foe. This resonates with me right now. Things do feel bleak and desolate (although I don’t feel threatened enough to need a garden claw), It is an unsettling landscape that lies ahead of me. It’s unfamiliar terrain and if I can’t trust myself then who can I trust? I think The Moon is telling me that I need to stop fooling myself and see things for what they really are. I also need to acknowledge that while things are bleak and desolate right now, they will eventually improve. I just have to make it through this dark and scary night. It’s not an especially pleasant image but it does offer some hope.
I like your new categories Debbie. “Re-invigorate” is a good word for it.
Being of a similar age to you, I think about what’s going to happen to us too. A friend of a friend recently went to Switzerland to die legally, as they were suffering a terminal and debilitating illness and no one in Canada could legally help. I hope when we get older that we will have some choice not to linger on without travelling to Europe and bankrupting ourselves to get help.
My father went into a nursing home and while he still has dementia, he has perked up which was very surprising as we thought he was weeks away from death. Fortunately his pension covers, the cost.
You would certainly do better not having the constant care and lack of sleep. I’m sure I’m not the only one who reads your blog and feels deeply empathetic.
Thanks so much for the kind, supportive words. It is sad that society takes away so many of our choices for dealing with terminal illness or even this type of mental deterioration.
Part of our concern with Maw Maw is that we don’t have enough resources to put her in a reputable facility and there aren’t any close to us. Things are also complicated by the presence of my 56 year old brother-in-law who is deaf and developmentally disable (he was originally diagnosed with severe retardation but I think it’s more moderate with elements of autism although I’m no professional). Putting one away means putting them both away and I just don’t think the hubby is ready to institutionalize his only remaining family. We’re also very concerned that neither one can communicate if anyone is hurting them or mistreating them in any way. It’s just so frustrating and scary.
I’m so glad you father’s experience in the nursing home has proven beneficial. That must be such a relief.
It is a relief. My sister is 10 minutes away so can pop in to check on him. I think this might make a difference Debbie–if they know you’re around checking, a bad employee can’t slip in there unnoticed.
I know what you mean about the worry about abuse. There is a hospital called Sunnybrook in Toronto–they have a special wing for veterans, and some unpleasant reports of abuse came out of there in recent months–the one place we in Canada thought was safe and reputable. Shocking.
You really have to keep on top of things and monitor what goes on no matter which place you choose.
Great essay, terrible situation. So sorry, Debbie. xoxox
Thank you so much Ellen. Lots of hugs your way.