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.

 

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5 thoughts on “Auxiliary Living

  1. Unfortunately it comes down to the almighty $$$ !
    At least that is what I have been told from the day I started training and working as a HCA!
    As so many others that I have worked with.
    That includes the OT, PHYSIO, Recreation Aides etc… and any other support aides.
    Cutbacks and more cutbacks!
    And each time they blame the low man on the totem pole!
    As we watch CEO, Managers, Supervisors getting raises +++ , and walking away with severances like you and I just can’t believe!
    That money could be going into more hands on staff..
    So we could have more than 61/2 minutes per resident!
    It breaks our hearts to have to say we will be back later. When sometimes we are not sure if we can.
    And people don’t realize the staff who take their break times to come back apply lotion,do nail care, apply nail polish. And do someone’s hair.
    The food well to be honest that puréed stuff ask your loved one how to make it taste better. Besides Chuck it! Lol
    We are as frustrated as the residents and the families some days. But we come in and make it the best days of their lives. Because it’s their home and they let us come for the day.
    I have been very fortunate over the years and have worked with many wonderful women.
    Who have left a little of their heart and soul in LTC.
    All we can do is hope that some day some one will say here’s more staff!ing money for more staff and more hours for the staff support.
    And above all here’s a cure for MS

    Liked by 1 person

    1. Thank you my friend for expressing this. I was hoping to hear from someone like you on what it must be like for the staff! I considered nursing a long time ago and was even conditionally accepted to the GMCC in Edmonton, a transfer program to the U of A. This was when a lot of the cuts were starting to happen and intuitively I chose not to pursue the career because of it. The nurses seemed so stressed and unhappy, and I didn’t want to take that home with me after every shift as life seemed chaotic enough for me at the time. Instead I became a caregiver for Cara and volunteer my time quite freely. The struggle is real and it needs to be fixed. I hope to help ‘fix it’ in anyway I can. I lost my best friend and sister to a system that none of us seem to have any control over. Unless we have big bucks like you have eloquently said in you comments. Thank-you again for responding, I hope this message finds you happy and healthy. xo

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  2. I am happy and healthy and living with MS.
    I had to leave my wonderful part of my life as a HCA. But I have many years of good memories, and good friends.
    And I’m still making memories every day. In fact that’s what everyone should be doing. Getting up in the morning and seeing a beautiful blue jay on the feeder is a wonderful memory.
    Or seeing the eight deer that come to eat the birdseed off the ground around our deck. Now that’s another!
    It’s all about how you look at life.
    The struggle in the health care system is across Canada. I find that they are so busy trying to modernize and centralize everything. They forget we live in rural areas, and it can’t always be done.
    We are having a difficult enough time just getting doctors. I honestly believe they should offer them a 45% off on their student loans if they will spend the first five years after they graduate in a rural area. Lol
    We will never see that!
    Enough of my babble no one would even suggest that it might cost someone their severance ??
    Have a wonderful day and thank you.

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  3. MS is such a terrible disease that robs it’s victims of the ability to do even the smallest things such as scratching an itch. My sister Merlyn died 12 years ago but had lived with MS for over 30 years. Fortunately she never had to live in long term care. Her loving husband was able to have a caregiver in their home so she had one on one care while he was at work and then he took over as her caregiver. (The one time she stayed in a facility, for respite for him, ended up as a disaster for her.) If only this was an option for all family members. Though staff may try their hardest to give great care they are restricted by the time allowed for each patient’s care. There is much to be said for the days of old where people who couldn’t care for themselves were cared for by their children or other family members.

    Liked by 1 person

    1. Thank-you for commenting. I agree I get angry at the disease for robbing my sister of her dignity and self reliance. I just feel discouraged when I look back to all those years ago when I watched that video and I struggle to name anything that has improved or changed for those in a long term care environment. The caregivers, the nurses and the support staff are angels in disguise as far as I am concerned. It is sad that funding and bureaucracy interfere with our basic needs when living in these environments.

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