I was just thinking; About life in long term care…
We speculated as children my younger sister and I, about what we would do if one of us became paralyzed. Our lack of life experience lead us to believe that if that happened it would justify suicide. Cara was suicidal for five years after she was diagnosed with Multiple Sclerosis, and I had a flat out nervous breakdown, thankfully we still lived together at this time so we could help each other.
Fast forward to more recent times.
I attended a conference for Multiple Sclerosis about seven years ago. I watched a video made for our government to advocate for a change in long term care environments. I could barley watch it I cried so much and I think I was still overwhelmed about the seriousness of Cara’s disease at that time. I wish I could say a lot has changed, but I can not. It has really stayed the same. I feel comforted only by the fact that I am capable of speaking up now on Cara’s behalf. There is so much more to Cara’s life with Multiple Sclerosis, however it is hard to see past her outer image. She is still my little sister, and she still depends on me and her family for answers when it comes to the type of care she is receiving. Sometimes all I can do is weep with helplessness and then get angry because I feel like there is nothing I can do. I am very afraid that she may never here the words; They found a cure.
Talk about humility
I can only imagine what food tastes like every day for her, living in extended care, all pureed and/or thickened so she can swallow it easier. Then after every meal she has to wait for the support workers to put her in her bed, change her diaper, put her pajamas on or change her clothes, and brush her teeth. All that depends on the urgency level of each individual that lives there in long term care.
Basic needs are always met with skill and resourcefulness in our medical system, we are lucky to live where we do, our medical practices here in Canada are stellar compared to many other countries. That really doesn’t matter does it though, because based on Cara’s oral hygiene I question if brushing her teeth twice every day has be followed through with. We will never know unless we put cameras in her room now will we? She paid a lot of her own hard earned money for ‘perfect teeth’ and now, we can not even brush her teeth with a regular tooth brush until she gets some major dental work done. I am not bashing the medical staff because I understand due to staffing issues, medical policies and funding peoples hands really are tied.
There is no real form of entertainment or socialization for someone that once enjoyed and extremely active life and if there is it based on availability and funding. Cara looks forward to taking her medication just so she can socialize. I just know that crushed up pills in apple sauce or yogurt is not for faint of heart. She takes these drugs and vitamins consistently every single day and night. Her once a week bath is the highlight of her week unless nobody puts moisturizer on her face, then she has so endure dry itching that she can no longer scratch or stop from happening.
What about touch? What about movement? Our bodies are made to move and be nurtured, not sit or lie every single day all day. How much television can one watch? Especially when that is really the only thing for her to do. The age gap is huge between Cara and the other residents, it makes a difference for someone in her generation compared to someone 30 to 50 years her senior. So any entertainment the Recreation Department does is geared towards seniors and not a highly creative 44 year old who was diagnosed with two eating disorders, a mental illness, thyroid issues and multiple sclerosis. (The thyroid and mental illness were diagnosed after the eating disorders and MS, while in long term care.)
Being hypersensitive, I constantly feel like throwing up when I have to visit a hospital or a setting like a hospital. I do not show it, that would be rude and insensitive. I even learned to give her a needle so she could be a case study for an experimental drug for MS, that was a long time ago now. I just brush her teeth and put coconut oil on her dry and sensitive skin when I go to see her now. We are a little nervous still because she had her thumb dislocated by some staff while being transferred into her bed even though her screams of pain were heard. She went more than a week before she was treated and that was after family pushed for it! As a caregiver I still feel hateful towards the treatment of some diseases because of the bureaucracy and stigma that goes with it all.
Cara’s thumb being dislocated was a while ago now, we are forced to let it go and move forward. Even though nobody took responsibility for the accident and nobody was really reprimanded to my knowledge. I would sincerely like to see some progressive changes in long term care for my sweet sister and anyone else that has to enter an extended care environment. We need funding, tenacious advocates and communication with our government. At least with that trinity of activities we can hopefully become empowered enough to make a huge difference for Cara, she has been waiting many many years for these changes and I still feel like weeping when I tell her not enough has been done yet and we are working on it.