Mom’s story of stroke and dementia

mom for generousity

The most difficult question I’ve ever asked anyone was what I have to ask my mom from time to time, “Do you know who I am?” This is the woman who gave birth to me, the woman who, until now, knew me better than I knew myself. Now she asks who “that woman” is when she sees a picture of herself. Then she wants to shake my hand but she keeps forgetting that she can’t raise her right arm anymore because of the stroke she had 2 months ago. She can’t get up on her own, go to the toilet, dress herself, feed herself and so forth. This is a woman who raised 4 children on her own but who can barely swallow a sip of water without difficulty.

I am appealing to well wishers to help us with funds to help take care of my mom, Esnath Mutibvu. She has vascular dementia, a stroke on her right side and has a mass on her brain that doctors (GPs)say they can’t do much about. They say she is at risk of getting more strokes and is also at risk of different kinds of infections because of immobility. Medically, it would be best for us to find a good neurologist who can give us specialised care  and eliminate some problems that are treatable in order to avoid unnecessary suffering. In the meantime we are relying on public facilities that are scarce and short of medical staff. Her mind is not completely gone and if there is  way to help her walk again and regain some of the physical functions she has lost it would be great.

She cannot be alone. She needs 24/7 nursing care and I, being the only child that lives with her, cannot work and support us if I have to be at home to take care of her. I have one brother who is trying his best but cannot afford it all. We lost 2 brothers already so our family is now just the 3 of us. Our family has been plagued by so much disease and death that I am fighting back the only way I know how. Being a chronic pain sufferer as a result of a condition called Anorld Chiari Malformation myself doing everything on m own is difficult. Unfortunately she will need care for the rest of her life and there is no telling how long that will be. Good care facilities go for approximately R11 000 per month. This will include daily physio, meals, a double room and nursing care, As she is in a delicate state of health, money will always be needed to make sure that if anything comes up she gets the best care.

I cannot imagine what it must be like to be in her shoes, waking up sometimes and not recognising her surroundings and not understanding why she can’t turn herself or even sit up as she used to do. It must be scary as hell. Then she sometimes becomes lucid and remembers that her mind is playing tricks on her and her body is failing. The heartbreak she goes through each time is shuttering. At 73, it’s amazing how much she still wants to achieve many  more things in life. Her prayers to get better have motivated me to start this campaign so that she gets the most that’s attainable to make her life better and comfortable.

Growing up, I never imagined that one day like would throw a situation my way that would make me hope complete strangers would help me, yet here I am. It’s painful and very humbling but I can’t stand by and watch the love of my life suffer more than can be avoided.

It’s difficult to set an amount of ongoing support. For now I will set a target of $50,000 for a good care facility and neurological fees and treatments. I would like to try everything humanly possible to save her life because she has jumped through hoops to make me who I am. She has also helped many people over the years although she didn’t have plenty herself. She deserves every fight in me.

If there is anyone who wants to get in touch with me, please contact me via email: misschipo@gmail.com or if you prefer via phone it’s +27835609299. The best way to donate is via this site but Moneygram and Western Union are also options. Well wishers in Zimbabwe can transfer funds to ecocash number  0776965918. Do send me  a message if you donate so I can thank you personally and give you updates about her progress. Thank you. Follow the link below to donate.

https://www.generosity.com/medical-fundraising/help-her-fight-dementia-with-dignity/x/17095678

Advertisements

My fiancè’s struggle with chiari malformation: My journey too

IMG-20151221-WA0084

Before I begin, I need to say a couple of things first, disclaimers of sorts. First, thanks Chipo for giving me space on your blog. I have been an avid reader since day naught. I’m delighted and humbled to be given space to contribute.

Second, writing in English like this is foreign. I’m now used to communicating, nay, expressing my feelings better in vernacular. Don’t get me wrong, I can communicate in English, I just don’t like it. There is something about writing in Shona that just brings certain words alive. I digress. So, if I don’t make sense, do forgive me, English isn’t my first language. This post has been a long time coming. After I read your post about your journey with Chiari Malformation and syringomyelia (See post here), I was moved, ok fine, I cried (a little). What struck me was how honest you had been with your struggle and how you had been trying to manage the condition. I had been a part of the journey with you, but just reading about it made me realise that one can be a part of something but still be oblivious of the same thing. I’m not one for talking about personal stuff, moreso on cyberspace, but perhaps someone will read and benefit, so here is my journey alongside you:

How it started

I remember it started off as a common cold. I remember that you were buying a lot of oranges (for Vitamin C), Med-lemon, as it is supposed to be the go to cure for the cold. 3 weeks after the first symptoms, you were still sick. When you went to the doctor and he said that it was pneumonia, I got a bit of a shock, as pneumonia is usually a pre-cursor to other diseases. Yet I didn’t worry. The doctor assured us that all you needed to do was to take your antibiotics and you would be fine. I was at ease. Then you started to feel pain in your arm. I would watch you writhe in pain when I or someone else would shake your hand. No longer where you able to arm wrestle with me, or type on a computer for extended periods. You started withdrawing from hanging out with friends. We had to cut down on doing things that we loved, like playing pool (ok fine, I love playing pool, you just went because you enjoyed my company!). I was still at ease.

Thoracic Outlet Syndrome

Then the other doctor said you had Thoracic Outlet syndrome. I had no idea that such a disease existed. I tried to read articles on it but couldn’t make sense of what the disease was. All I knew was that you were in pain, always. I wasn’t fine anymore. I could see you trying to put a brave face to do things that would cause you pain. I could see you trying to lead a ‘normal’ life in spite of having a horrendously painful arm. I remember the day you went for physiotherapy and you swore never to go back again as the guy was literally wrestling with your arm. I tried to help you as much as I could then by doing whatever thing was most difficult for you, but it wasn’t enough.

Chiari diagnosis

Just when I thought I had heard all the diseases with the funny names, in came Arnold Chiari malformation. There were three things that I got from the new diagnosis: 1. You had a cyst in your spine. 2. Your brain was putting pressure on your skull. 3. You needed to get a piece of your skull removed.

To be honest, I really didn’t know what to do. Why was God doing this to me, I thought to myself. What had I done wrong? It seemed to me that your disease was a punishment of sorts for something that I had done. Herein lies the problem. I took you out of the picture and began focusing on myself. I forgot for a while what you were going through and focused on myself. I thought to myself that this isn’t something that I signed up for. Why cant we have ‘normal’ couple problems, like having arguments about whether or not I should shave, or whether or not you think buying an Xbox is a worthy investment. I certainly didn’t sign up for all these other things. Thinking like this made me realise what an ass I was being. I couldn’t believe that I was thinking like this. Does one love someone just because they aren’t sick? Surely can you only love someone in the good times and when the going gets tough you think of bolting? If that was love, then I certainly didn’t want it. I had always prayed and hoped for someone to love me through thick and thin. I thought to myself that this was the opportunity to show my love, that no matter what you were going through, you weren’t alone. I was with you.

I was with you the day you went into surgery. In fact, I had a small procedure of my own that same day, in the same hospital, but all I could do was think of you. I was thinking whether or not you were comfortable. Whether or not you were scared but didn’t have me to hold your hand. I remember when my procedure was done and I rushed to your ward and I saw you sedated with machines hooked up to your body. All I could do was watch as I was powerless to help. If the operation was what it took to make you better, so be it. You wouldn’t have to walk alone. From your experience with chronic pain, I saw a different side of you that I hadn’t seen before. I saw a brave girl. In spite of the seemingly insurmountable challenges, you held your head high. You would face the world everyday with renewed verve. I saw an optimistic girl. Yes today you were in pain, but tomorrow you may not. I was inspired.

Lessons from being a part of this journey:

  1. You can be a part of someone’s story, yet you don’t know much about what they are going through. It is important to check up on each other.
  2. Big boys do cry. There’s no point in trying to remain calm when things aren’t fine. It’s ok to admit to yourself that you are not fine. It’s ok to let out a cry or two to get all the feelings and emotions out.
  3. Get support from other people. Life is tough as it is. You cant go at it alone, get a group of ‘cheer leaders’ around you to egg you on.
  4. Don’t wallow and do nothing. If you are in difficult situations, do your best to find solutions.

 

“Life isn’t about waiting for the storm to pass, it’s about learning how to dance in the rain” – Vivian Greene

In the immortal words of my childhood hero Porky Pig, “that’s all folks!”

When death is a blessing. RIP Jerika Bolen

Think about all your fears. You will notice that they all have to do with something big, permanent/ final and most of the time something that affects many people. I have been in pain for almost 2 years now. In … Continue reading