Tag: caregiver

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“Battered n’ Worn”

I have recently completed a painting called, ‘Battered n’ Worn’ (view on my Facebook Page: ‘Harris’ Artistic Designs’). It depicts a scene of an old, weather beaten shed and an overturned ‘punt’ that had seen better days. And the boisterous sea just uncaringly raging in the background. While I was engrossed in the actual painting of the scene itself, I really didn’t give much thought to what I would name the painting or what the painting was actually trying to say to me; not until it was competed! And then I stepped back and viewed it from a distance, it really told the story of my life and how I was actually feeling right at that moment. I had painted my life and it was ‘Battered n’ Worn’.

I have fought this crippling, disabling sea of depression and anxiety for far too long and it was starting to show. That along with ALL of the other winds and weather, had left me battered and worn. I was and is feeling much like that deserted, weather beaten shed; ready to crumble if I had to withstand just one more storm. How much can one withstand before the storms of life just leave you battered and worn; before the shed can take no more and just eventually crumbles beneath the beatings of the storms of it’s life.

If the only battle I had to fight was for my mental health, then maybe I could withstand that. But when the storms of life, and they are many, come beating you down and the winds are taking you off your feet, the rain as saturated your skin, right to the bones. The cold, cold air as left you numb, the raging sea is pulling you down into it’s clutches and you are drowning, gasping, gasping, gasping for air.

But you cannot keep a good ma down, no matter what others may think or say about you; you forgive and move on. You get up and dust yourself off, and we have had to do this many a times, and keep moving on.

One such battle that we have fought and I believe now is the time to let the world know how Lauren was discriminated against by Skate Canada, Skate NL and the CBNSC. I will give them the benefit of the doubt that it may not have been intentional but as defined by Human Rights: ‘Intention to discriminate is not a requirement to a finding of discrimination’. The full story can be found on our website: www.harrislisa72.com called, ‘I Want To Skate Like ‘Bruddy”. But the story doesn’t end there. I filed a complaint with the Human Rights Commission and won the right to file a ‘formal complint’ against Skate Canada NL. This was no easy journey, filled with anxiety, fear and intimidation. You see, Skate Canada (on behalf of Skate NL and CBNSC) hired a lawyer to fight their battles (an intimidation tactic I’m sure, hoping we would back off, not a chance). I followed through with the Human Rights procedure in settling this injustice.

This is what we were offered to keep our mouths shut and not proceed any further. Sadly to say, we could not proceed any further because we did not have the money to obtain legal counsel of our own and I could not fight anymore. But this is what we were offered and I am quoting Skate Canada’s lawyer, ‘My client is prepared to pay the sum of $2000.00 in settlement of this matter. These funds would be paid in exchange for a release which acknowledges no admission of liability on the part of my client. A condition of the proposed settlement is a confidentiality agreement. This proposal would not see the provision of an apology on the part of my client’. Obviously we did not accept the ‘bribe’ and because we really could not pay for a lawyer, we had to withdraw the complaint.

Did we lose? Not at all. First of all we did pass the requirements and was awarded an ‘Official Complaint with the Human Rights Commission’. That was the first hurdle and we leaped that one, without any problem. We knew we had a legitimate complaint. And although we had no admission of guilt on either of the three clubs involved; we ourselves knew by their actions of hiring a lawyer and offering money for a confidentiality agreement, that we had won.

I write this because it is not Lauren’s Cerebral Palsy that we are fighting against but an everyday fight for her rights as an equal, inclusive and accepted little girl that needs to live a happy life, in spite of the injustices, the stigma, the unfairness and lack of compassion that is still prevalent in our so-called ‘Society’ today. And this is just one example of what we have to deal with on a day to day basis. And yet we have to stay strong because the challenges that come with Cerebral Palsy alone is enough to ‘break’ any man or woman!

So today as battered and worn has we may feel, we will fix up that old shed and polish ourselves off and lift our heads high and be proud parents, that want nothing more then for their children to have the best life possible; against all odds. And we will not give up the fight, we are going to brush ourselves off and start again. It’s not a choice, we have to do it, if we are going to survive the raging storms in our  lives!

 

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No Options Left!

The screams of terror, fear and pain fill the house. No, we are not watching a horror movie; it seems we are living it. Logan rushes to close the bedroom door because he can’t bare to hear his little sister in so much pain. It was just Monday, October 22,2018 that Lauren had her third spica cast removed. For anyone having a cast removed is never pleasant but for Lauren it’s even worse because her cerebral palsy exemplifies itself by spasticity(tightness)  of the muscles.

Because her muscles have been unable to move within the cast: they are now weak, tight and very little control over her movement. If she is moved at all, even to do a pamper change, throws her into an horrifying rage. We have to put her in a bath of epson salts and very warm water to help relax and awaken her now ‘sleeping’ muscles. Getting her from the bed to the bathtub is nothing short of a nightmare. She is clawing at my neck in hopes of getting relief from the fear and pain. Once she gets in the tub with Mommy, she starts to settle down and relax a little, to a point where she is just floating. We do this for about twenty minutes. Then its time to get out and the terror starts all over again.

Why am I telling you all of this? It’s because I want to educate and make you aware of what’s involved in caring for a child with a disability. And also to make you aware that our insensitive, non caring, non compassionate Government does nothing to help. We has her parents feel so all alone and no support, we have to provide 24/7 care ourselves with  no respite care because we can’t pay for it ourselves and our Government as declined  any help whatsoever. We are not complaining about what we have to do, because we love Lauren and would give our lives for her. But we believe we deserve a little help from our Government to receive some respite care. We are only human and we are running on empty and this road is just beginning and we are falling beneath the load already.

What do we have to do to get some help? I am tired of pleading with our Government officials MHA, MP, Minister of Health, Minister responsible for the Status of Persons with Disabilities, etc. Where did I get with all this advocating? No Where!

Where else can I go? What else can I do? We have run out of options and feeling exhausted and overwhelmed. Who can help? Who will help? Someone as to do something and I’m calling upon our Government to get their heads out of the sand, to hell with policy and do what’s right for this little girl and her family.

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Lauren’s Blog

Hi, my name is Lauren Kennedy Tucker and I have spastic quadriplegia cerebral palsy. I am five years old, ‘I’m not a baby anymore; I’m a little girl now.’ I really want to walk and ‘do it myself’ but when I was born the part of my brain that tells my muscles what to do was damaged. So when I want my legs to move, they don’t listen. And because of that my whole life is one challenge after another. Daddy is going to share with you some of those challenges and help you to make a little sense of why that makes my life a little more difficult. Because for me every aspect of my life is affected and I have to endure more pain, hurt, mobility issues, accessibility problems, inclusion, therapy, etc. then the average child will endure in a lifetime.

Don’t get me wrong, I still live a happy, loving and fulfilled life, in spite of my challenges. This is ‘my’ normal, it’s just that everyone else as to be enlightened, educated and introduced to my way of life. It’s not that I am different, it’s just that I sometimes have to do things a little differently than others. Maybe you have to wear glasses to see, I use a wheelchair to move. Because you wear glasses doesn’t mean you are different and should be excluded; then neither should I because I am in a wheelchair (for now).

My Daddy is a great advocate for person’s with a disability, mobility issues, vision issues and anything that would make our world a better place to live. He certainly believes in equality for everyone, no matter what. So I’m really lucky to have him on my side. Being an advocate certainly won’t win him any popularity contest but if it’s going to improve my quality of life then Daddy doesn’t mind because he always says, ‘It’s the squeaky wheel that gets the grease’. Both Mommy and Daddy are my greatest fans, I am so lucky to have them in my corner. And of course ‘Bruddy’ (Logan); I just love him to pieces!

Below is a list of some of the events, therapy, and important people people that are involved in my life:

Cerebral Palsy Clinics at The Janeway every 6 months.                                                     Physio Therapy                                                                                                                                       Occupational Therapy                                                                                                                        Speech Language Pathology                                                                                                          CNIB Kim Hart, Vision Impairment                                                                                                Psychology                                                                                                                                                Inclusion Consulting                                                                                                                              Orthopedic Surgeon DR. Deane                                                                                                      Neurologist Dr. Buckley                                                                                                                       Developmental Pediatrician Dr. Doyle                                                                                         Pediatrician Dr. Aktar                                                                                                                           Ophthalmologist Dr. Bramwell

Wow. that makes me feel like I’m a very special person and well taken care of! Daddy , you forgot to mention that I frequently visit the Children’s Shriners Hospital in Montreal for assessments. I’ve been to Montreal four times already to be assessed for a Rhizothomy surgery which could release some of the spasticity in my muscles which would in turn help me to have a better chance of having some form of mobility. But up to this point I have not been a good candidate; but Mommy and Daddy are not giving up. We believe that eventually I will get this badly needed surgery. Dr. Farmer is going to keep his promise of doing his best to help me walk. But for now I have obstacles to contend with before I will even be considered for the rhizothomy surgery.

Because my disorder rendered me very spastic, in order to relieve some of the spasticity I  first began having botox injections through my groin. Botox is known to paralyze part of the muscle which in turn releases some of the spasticity. This is only a band aid remedy and would only last for short periods of time, only a few months at most. I had four procedures done while put to sleep but then the effects of the botox didn’t work anymore and the procedure was discontinued.

Right now, I have two dislocated hips and still waiting on surgery. If I were an adult with two dislocated hips; would I still be waiting on surgery? Daddy doesn’t understand the long wait, I was suppose to have the surgery done over a month ago but it got postponed and as of today we have no rescheduled appointment. I will have reconstructive osteotomy pelvic and hip surgeries done but at separate times. It would be too dangerous to do two of my hips at the same time. They will do one and then I will be in a hip spica cast (body cast). Then depending on how I am recovering; two or three weeks following I will have the second pelvic and hip surgery done and placed in a body cast for another 6-7 weeks, depending on the healing process. This is going to be very stressful and painful on us all but Mommy and Daddy are praying that God will be with us.

I am also diagnosed with epilepsy, my seizures seem to be under control somewhat since I’ve been on a new drug. Mommy and Daddy watch me day and night to make sure I’m not having a seizure. They are scared that having another seizure would do more damage to my brain; that would not be good.

There seems to be no end because in June I am scheduled to have strabismic surgery on one of my eyes. Dr. Bramwell is hoping that by correcting one eye will help correct the other. This is a visual defect in which one eye cannot focus with the other on an objective because of imbalance of the eye muscles. We are hoping this will help with my vision and the turn in my eyes. It seems nothing is for certain but we try to keep positive when things are so uncertain.

Once my hip surgeries are successful and healed, then there’s the surgery that Mommy and Daddy are so concerned about. It’s not guaranteed to work but it’s the only option we have right now of releasing some of the spasticity in my muscles especially around my hips because there still is a chance that if the muscles get too tight they can pull the hips out again and we have already been down that road and don’t want to go there again (I will have had 3 hip surgeries ). The next surgery would be to insert an intrathecal baclofen pump underneath the skin. Baclofen is a muscle relaxant medicine used to decrease spasticity. It will deliver the drug right to the spinal cord and release some of the spasticity.

It looks like a long road ahead but we will take it (try to) one day at a time. I know Mommy and Daddy are so exhausted and stressed; with the 24/7 care that I require, the constant trips to the Janeway, the worry about my surgeries, the expense of needed equipment (I am due for a new wheelchair and that’s like buying a used car) and lack of support, no available funding; all combine to make life a little overwhelmingand draining; both mentally. physically and financially. But God will make a way!

 

 

 

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A Fight For Our Lives

It’s been said ,”that it’s the scrupy wheel that get’s the grease”. It seems I’ve been the scrupy wheel quite often these pass few months. If I have a cause that needs grease then I have no problem stating my case. From mental health issues, accessibility for disabled persons, inclusion for all, funding for disability needs, etc. We have to fight for our lives!  I feel this should go public, just to give you a glimpse into what we have to fight for and this is just a taste.

Several months ago I contacted  our MHA; Ms. Pam Parsons because we were barely surviving. I was speaking with her assistant, who I poured my heart and soul out to. Only to learn we did not qualify for anything ( I’m referring to some help, care and cost for Lauren who has Spastic Quadriplegic cerebral palsy) because of my wife’s income. I heard back from Ms. Parsons this week, not because of my visit to her office but because of my appearance on the NTV show, Heart Matters. It was obvious to me she did not make the connection. When I brought it up, she knew nothing of my visit and had to look up my file to see just what I was all about. I sensed a little disconnection on their part.

After a lengthy conversation with Ms. Parsons it was obvious to me that the Provincial Government was certainly not going to be our lifeline. Yet she did promise to work on our “file” that wasn’t looking all that hopeful.

She then suggested I contact our Federal MP; Mr Ken McDonald. Which I did and again could only speak to his assistant. I documented every word I said during this conversation. And I thought I should share it with you in hopes that public knowledge would add extra pressure.

She started the conversation with, “well what is it exactly you are looking for?” And I started my lengthy monologue:

What I am fighting for is our lives, I feel we are a family drowning in despair, tired of fighting, totally exhausted.

I have fought mental illness all my life, but five years ago I experienced a total mental breakdown. Meaning I was rendered totally disabled; unable to function. I was told by my psychiatrist there was no cure for my illness and that I needed to apply for Canada Pension Disability because it was unlikely I would ever return to work. Our world that day was forever changed. I went from a person that was self-employed for 28 years, to a person with an income of $900 a month through CPD. And because of my illness my brain and body totally shut down.  So my wife was now caregiver for me, my now six year old son, plus our now four year old daughter; who at one years old  was diagnosed with Spastic Quadriplegic Cerebral Palsy. Again a second life altering diagnosis that we had to face, in an already struggling family.

We lived in St.John’s as long has we could until we were forced into bankruptcy and lost everything we had. And on top of all this chaos, struggle and stress, my wife still had to work in order to keep this already struggling family together.Because of all this financial ruin we were forced to move to Bay Roberts; to be closer to family for some support.

Now five years have passed, we are still fighting to hold the pieces together. I am doing much better but far from a functioning, normal human being. With all the hell my wife has encountered, she was diagnosed now with severe anxiety and depression. Thus she was forced by her doctors  to take a leave; no human human being could survive the amount of stress that she is under and still function in a classroom of 28 children and not have a breaking point.

Its certainly true  that in our society today it takes two incomes for a normal family to survive. We are far from  “NORMAL”. Lisa’s income just does not cut it. With Lauren’s needs alone we require one income, to support her needs. Thus far we have had to depend on family, fundraising and various charities. This financial burden should not be placed on others. it’s not their responsibility to do so. And it’s not our lifestyle to be constantly looking for money from family and the general public, they have done enough. Now it’s time for the Government to step in. Lauren is a child that requires much needed treatment, equipment and care; for which we get no assistance.  She deserves better! Now what are you going to do about it?

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It’s Not All About Me

When you have an illness, especially long term, it’s not only the patient that’s affected but also the caregiver. I’m not just referring to my own illness but anyone with any kind of illness or disability, whether that be cancer, stroke, heart attack and the list goes on. Behind every sick person there’s that one caregiver who is there 24/7. How does that person survive and not get swallowed up in all the stress and not experience burnout? And how does a marriage or relationship (if the caregiver is your spouse or partner) survive such a traumatic experience and still survive? It’s my goal to give you some insight, hope and to answer some questions we might ask.

With my illness, major depression and anxiety disorder, I became a different person. My illness stripped me of my personality, my self worth, self esteem, my job, my everything; to a point where I felt I was left with nothing, not even a soul. My wife was living with a different man, a man she did not know, a stranger. But deep, deep down inside,that man was still there, trying desperately to come back. Really she was a caregiver for three children; myself, and our two children, one with Cerebral Palsy. I was totally in her care, I could not do this on my own; I was disabled and could not function. But the burden was placed on her to be strong and keep our family together. How long can one person survive in this environment and then try to keep her teaching career has well? In answer to that question; no human being can possibly stand up to all this pressure, there is a breaking point.

Our marriage has suffered immensely, the road has been long and rough. I know many days she must have felt like running and I would not blame her. But thus far we are still together and fighting to get “us” back. Statistics show that marriages undergoing the pressures and stress that ours is, do not survive. But thank God we are surviving and hoping for better days. We have certainly put our marriage vows to the test; “for better or worse”(we’ve experienced the worse), “for richer for poorer” (we’ve been down to nothing, financially), “in sickness and in health” (we have been tested to the max). And praying to God each day that He will hold us together.

The way in which a mental illness differs from many (but not all) other illness, is that with a mental illness it changes who you are, on a personal level. My wife was not living with the same man anymore, this adjustment is what many cannot wrap their heads around. After five years we are now trying to rekindle that love again. Mental illness has certainly been a big strain on our marriage but its going to take a lot of hard work to survive. But we are giving it all we got and some days that’s not a lot; we are so drained and exhausted. So if you are reading this and you are a caregiver of any illness; my hats off to you! May God give you strength, courage, and hope to go on.

Then there’s the question; how can one person (the caregiver) survive all of this stress and not reach a breaking point. I really believe, it’s not possible that it does change who that person has become. The years of stress, feelings of abandonment, loneliness, hopelessness, fatigue; all take it’s tole on that person. Maybe it’s easy for someone to judge a caregiver and say , “well that’s what they signed up for”. That is not true and if you haven’t walked in their shoes and haven’t experienced the life of a caregiver, then don’t judge. But instead, be that helping hand, that voice of encouragement and that source of strength for the caregiver. For they need and deserve all the help they can get, just has much as the ill person. But lots of times we have the tendency to overlook and forget about what the caregiver is going through.

So if you are a caregiver and you are falling beneath the load, please seek help; talk to your doctor, seek out a good friend, take some time for you. Don’t feel guilty about doing so, you need help too. If you don’t look after yourself it’s possible to get “caregiver burnout”. And yes there is such a thing and is very serious. “Caregiver burnout is a state of physical, emotional and mental exhaustion”. Burnout can occur when caregivers don’t get the help they need or if they try to do more than they are able. They can experience fatigue, stress, anxiety and depression. So take the time to look after yourself before you get to this point.

So today I salute all you caregivers! Especially one in particular, my wife Lisa. Thank you for sticking by me, through thick and thin. There are no words to express my gratitude. And Lauren and Logan say thanks has well. We love and appreciate you.