Living with Multiple System Atrophy. A life limiting, neurological brain disease.

MSA and respite care

on January 23, 2013

Sam with neck brace
Every time I write for the blog, I try to remain positive, who on gods name wants to read misery week after week! I try to include the good,bad and the ugly! To say that this has been a mixed week would be an understatement, it’s went from low to high to low to utter despair! 😥

We have reached a point where my doctor has brought up respite care, I have turned myself upside down, outside in, twisted myself in circles and left my mind muddled, you see the difficulty is that whilst I feel ready, Andy definitely doesn’t, he says he’s coping fine, doesn’t need help etc. Somewhere inside I think he thinks its a step closer to giving up. It’s so difficult to write about this and many people will wonder why we have chosen to live out our lives through a blog.

Sometimes it’s easier to convey your fears, to share your journey with other sufferers and their families, to leave a diary for my family… All those reasons and a million more. Going for respite care is about giving everyone a break, as many sufferers say, its so hard watching your loved ones do everything for you, hard to just sit on the sidelines of what your life used to be. For me respite is never about giving in, rather having a break, let someone else do the work so that Andy has the freedom to nip to the shop, to see friends etc if he wants, without worrying about me.

We also know that MSA holds no prisoners and the disease continues to deteriorate. My gait is now leaning to one side and I’m developing droopy head syndrome (not attractive). We listened to the timelines, obviously the doctors don’t know how utterly stubborn I can be! The thing with living with a terminal illness is that you need to dig deep inside yourself and find that stubbornness, that strength and then rather than feel sorry for yourself, grasp the life you have now and embrace what you have rather that what you haven’t.

After my confusion over life after death, I was visited by an incredibly lovely woman the reverend J Mary Henderson, she helped me greatly and I will for sure see her again, she gave me comfort when I needed it most. 😀

Rhanna studio shotRhanna … absolute everything, she went to get her professional shots taking on Sunday, her dream to be an actress is one I’m certain she will achieve and she had a great time, she loved every second of it and is now a step closer to her dream… She has Andy and I supporting her all the way and I think Rhanna’s life will a happy one because she lights up a room when she enters it and is not only beautiful on the outside but on the inside as well. Although I couldn’t go her excitement was infectious, making it impossible to be sad!

We receive so many comments and messages through Facebook etc and we try and answer them all, we are so humbled and sometimes overwhelmed with the beautiful things that people say and it’s very comforting to hear we have helped someone.

Andy who is without a doubt one of the most incredible man EVER holds me through the tears, reassures me that I am still beautiful (yes I let him away with that little white lie) 🙂 he is patient, understanding and most importantly he is always there for me, I wish I had something I could give him back, he has my heart, he always will, he’s my real life superhero!

So in a week of ups and downs, highs and lows, we as a family realise its not what you don’t have that matters, it’s what you do have that’s important ☼

bookJust before I was about to end the blog, Andy brought me through the most beautiful book ‘a mothers journal, to my daughter with love’ it’s simply stunning and I want to say thank you from the bottom of my heart to Joy a neighbour with an extremely fitting name. ♥

I’m a normal teenager, I’m a normal teenager, I’m a normal teenager!
If I say it often enough it will be true, then I come through to the living room and I see mum then I remember I’m not a normal teenager, I’m 16 years old and my mum, my best friend is dying, I can hardly say that without crying.

It’s horrible and I wish it wasn’t happening to us, I don’t want it to happen to anyone else but it’s hard. Mum is constantly saying go out with friends, never miss an opportunity to laugh and I do, I’ve been to the cinema to see Les Mis 3 times now and been ice-skating with friends, all of them has been great fun but every time I’m not with mum, I’m worrying about her, texting to see if she’s ok and wondering if she’s telling me the truth. Is she just saying she’s ok to stop me worrying?

Rhanna head shotOn Sunday I had an amazing day, Granny picked me up and we went to a photography studio to get my head shots for joining an acting agency, it was truly amazing, I felt like a star!! But I’m always thinking of my mum. As she’s getting worse I wonder what will happen and now there is talk of respite care, a break for everyone, that doesn’t mean mum is going to die but when you think of hospices that’s your first thought. Mum tells me NO its not like that, not at all and if it would help her then I’m all for it, I know Andy gets tired, I know I could do more and I hate that maybe I’m letting mum down?

We are hoping to get away for a small break which will be amazing, just me, mum, Andy and Molly our dog.  Just relaxing at a waterfront cottage in our onesies reading and sharing stories, it’s on our list of things to do, not a bucket list, mum doesn’t like that it’s more a list of simple things to do together, the only big thing she wants is to see the northern lights.

I wish more than anything we could help her achieve that dream, no one deserves it more. All the fundraising we do, is for the MSA Trust who are wonderful, mum would never consider keeping anything and she says we will continue doing what we do until we can do no more. None of us will do that, because there are many families living the same lives as us and sadly there will be more when mum isn’t here anymore.

Mum you are the bestest mum ever and I love you all the way to the moon and back again xxxx xxxx xxxx xxxx

Black and white photo of Rhanna-14

8 responses to “MSA and respite care

  1. Mary says:

    Rhanna – you are a truly amazing daughter – my mother died 47 years ago when I was just 14 and I was treated as a child – if only I had had the opportunity’s that you have of spending that precious time with my mother and doing the things you have mamaged to do – your mum must be so proud of you.

    Sam – you are truly blessed with your daughter – I hope you have many more happy hours with her – she will never doubt how much you love her. Take care and enjoy the life you have limiting as it is. You are all in my prayers. x

  2. wilma0750 says:

    Samantha god knows where youve found the strength to do your blog this week its a tough one in as much as your totally done in and you really do need to rest , ive not an answer for re the respite care just go with what your heart tells you , i know everyones getting a bit scared even me !!! who woulda thought that eh lol !!! your courage and strength does you proud i know its a big ask but if you could just try and muster up some more off it id be a bit happier and so would andy rhanna and everyone else that knows and loves you see we need you to here cos life be dull and boring otherwise . your my daughter and i love you infitiy xxxxx rhanna you are just awesome and sunday was just great the pics are out off this world i hope and pray that someone snaps you up even waterloo rd would be a start heres hoping , you are so much like your mum with your grit and determination so much so that you have the stength to carry on your a star in the making luv u zillions beannie xxxxxxxxx

    • Francie Hutton says:

      I am so in awe of what you are doing, Sam. Let others do for you. That is your gift to them. They will remember it with love and precious memories. And I agree with your Mom: Let you heart lead you as to what to do, and let Rhanna and Andy know that is your wish, and ask them to honor it.

  3. We will keep you and your beautiful family in our prayers !!!! The respite care is a God send !!!
    This awful illness took our beautiful daughter in law on Christmas Day ,2012. If not for the respite care ,it would have taken my Son too. Up until respite care ,he was the full time caregiver!!Our Amy donated her body to Science , in hopes that they can find some kind of an answer as to why it strikes young women , it is so rare !!! for women , she like you has a young Daughter , who wants to be an actress and be on Broadway. Emily is 16 also !!! Don’t give up , keep your faith and your love for each other will see you through this !!! May God give you the strength and watch over you and your family !!
    Sincerely, Shirley Rothwell

  4. I have to say the respite care was a true God send for me. It was not that I did not want to take care of my husband, but needed a break once in awhile. At first I found it very hard to “let go ” I would literally run to the grocery store and get back as fast as I could. As time went on I found it easier to go out. Eddie had two very good caretakers and I began to trust that someone other than me could be with him for a few hours. I am following your blog and send you all strength and hugs . I work daily on letters to news outlets, tv shows, anything I can do to get the word out to the public about this disease. Even though I lost Eddie, I want a CURE ! At least we could get more research ! Bless all of you. Stay strong .

  5. jackie says:

    Hi Samantha, I have been following your lives for some weeks but not quite knowing what to say
    .I do understand what is going on in your family. My daughter was diagnosed with a progressive disease some 30 years ago. We were told she wouldn’t live past her teenage years. She went on and lived another 20 years, so take each day has it comes, no one knows how long we have left.
    You are all so lucky,not that you have an illness, this you wouldn’t wish on your worst enemy, but lucky you have special people in your life,as my daughter did. She was special and so are you and your family.
    S..t happens and the bad times are hell but the special times are irreplacable. Some people go through a lifetime and never experience them.Love to you all.

  6. April Sheffler says:

    Hi You both are so strong to write these blogs. My mom has MSA too. It has been such a horrific journey. Would love to share some info. My mom developed head dropped syndrome last Feb. You both are so brave for sharing. we all need to share to raise more awareness. Thank you April

  7. fiona thomson says:

    You are a truly remarkable family, Sam, you have given Andy your unconditional love, and that is all he could ever wish for from you, love to you all as always, Fiona,Xxxxx

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