Please Wipe My Mouth

We traditionally celebrate Easter by eating a Turkey, being with family and hiding a basket with eggs and treats from the Easter Bunny for the kids. So I was thankful that in spite of my moms aching back she came out to see Cara and share in some tradition with her granddaughter and me this year. I unfortunately have a sinus infection and can not go see my dear sister until the infection is healed. Cara with her Multiple Sclerosis has had issues with breathing and choking and has had to be ventilated more than once so I will not risk getting her or any one else where she lives sick with my infection.

So our mom went to go and spend some time with her and when she went to give her a kiss, like she always does, she noticed that she had food caked around her mouth from lunch.  I wonder how short staffed some of these homes are, not finding the time to  completely wipe someones mouth after eating a meal. My sisters skin on her face was dry and flaky again as well, may I remind you that she has MS, she can not wipe her own mouth any more, so she certainly can not put face cream on her dry skin. This saddens and frustrates me to my core. We take for granted the fact that if we have and itch we can scratch it. People in the medical profession honestly want to help but simply do not have the time.  Changing someones brief would definitely take priority over making sure someones mouth is clean just because of time.

We are at for front of many great solutions to the many issues that someone with MS has to deal with.  We have re-purposed a pill that was once used for acne to slow down relapses and it is working, the more relapses the worse the disease can get. This is not true of all MS suffers, sometimes the disease doesn’t debilitate completely like my sisters has, but I am sure it sits in the back of their minds as a possibility. There are a lot of funds being raised by volunteers and people affected by this crippling disease that go straight to research for the cure and a better quality of life. The sad thing is, is that I do not see any of this affecting Cara.  Day in and day out she lays stiff in her bed or in her chair, and she can’t even get a regular massage or an occupational therapist to see her on a regular basis. We would have to pay for these things out of pocket because they are not covered by any type of funding.

Something has to change.  Hopefully in Cara’s lifetime. I so desperately want to say to her that it will improve for her and the cure is available now.  Cara would need rehab in order to learn to walk and use her muscles again, as she has atrophied from lack of use and being in one position to long. I am pretty sure she would not have any issues with this.  I think even if she could not walk again, just to know that the quality of life could improve in the extended care institutions and homes, that would be enough for her. Really this would be enough for most of us. It is not only MS patients that suffer it is anyone that resides in these places. Some of the people living in an extended care environment have to live many years like Cara has before they pass. I sure don’t want that for anyone and neither would Cara.

Thank you for reading this and if you are so inclined, give to the MS Society, we raise funds through various fundraising events such as then MS Walk, Bike Tour, Golf Tournaments and Burgers to Beat MS through A&W. I personally am raising funds through The Jaymen Built MS Walk this year in May my Team is called Cara’s Corner.

 

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Beyond Movment

So blind now;

Can’t see my own vision;

The noise of my ego assaults me.

Make this stop;

My teeth ache;

With my hate.

You see through;

What my eyes;

Will no longer hide.

Auxiliary Living

Auxiliary Living

 

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.

 

The Shell of a Girl That Once Was

 

 

That is what she lives in, a shell of a body that was once thought of as sexy and beautiful. She has a brain that works on only long term resurrection.  I have a really hard time with this because it may be caused by mind numbing boredom or all the medications she is convinced to take.  It must be like living in solitary confinement on the best of days…

 

She has Multiple Sclerosis.  She is my younger sister.

 

I get extremely angry and frustrated at this degenerative auto immune disease, I hate what it does to her.  She was very depressed and suicidal for a long long time because of this disease.  I have felt the same way because of it.  She is my best, and sometimes my only friend.

She never had the chance to give me nieces or nephews like we talked about so very long ago.  She had just gotten her first car when diagnosed, but had to sell it a year later because her legs couldn’t work properly to drive safely.

People from other countries that have never even heard of this disease can move to Canada and have a child here and that child can get Multiple Schlerosis!  Why?!?!?

We still do not know why. This makes me so angry at IT, this really is Canada’s Disease and we need to stop it.  I fear that in my sisters life time I will not be able to go to her and say, “We did it Cara, we found the cure.”

My beautiful sister had her life stolen from her because of MS.  We need to continue to battle, educate, inspire and nurture those that are unaware of what this can do to a person.

I was spending time with Cara recently, helping brush her teeth, feeding her thickened water and loving her like I always do.  Then the nurse came to her door and politely asked us if we were busy.  Busy living, surviving and depending on others; Yes.  Other than that nope.

I felt like asking her if we were intruding on her schedule because she proceeded to force feed my dear sister disgusting crushed up meds in applesauce while asking her to help her by taking it quicker.  While in doing so telling Cara how lucky she is to have me.

I am the lucky one.  I have still have Cara, she is the true definition of a fighter. She is tenacious and hilarious.  She reminds me every day that life ain’t so bad, because of her positive attitude. How she remains so positive sometimes is beyond me.

First of all, my sister has issues with swallowing because of this revolting disease and second of all, she is unable to process information quickly because of it.

That nurse pissed me off.  She was condescending and rude.  I am sure she is very unaware of how she made me at that time.  Even though the air was thick with resentment from me.

Unfortunately this nurse may not ever read this, or understand life from Cara’s point of view.  But I have to pick my battles wisely, because what if I raise a stink about something and a staff member decides to take it out on her when I am not there? What then?  I really hate to have to even think like this, because most health care professionals are truly awesome individuals.

All in all I am really hoping our precious studies and scientists find a cure long before my sister forgets she even suffers from Multiple Sclerosis.  We need the cure now, so Canada can stop saying this is ‘our disease’.  I hate this disease and I hate the amount of time it takes to produce an ounce of understanding about it.  My sister does not have the luxury of time or control anymore.

 

State of Confusion

Can’t find roots

Searching souls

Breathing labored

As I travel through

This willy-nilly life

Expectations falling quickly

No ground to step on

Tears of frustration

Always wanting more

There has to be a way

Searching for inner strength

A beauty hard to see

As confidence lacks

Trying to get heard

Crumbling as energy wavers

Only to receive pregnant silence

In an abyss of technical confusion

Understanding the end is near

Time to heal

Repair all damage

Accept only compasion

As my fate pulls me forward

via Daily Prompt: Willy-nilly