Changing – Havin a Chat

Pop and Mum Penguin (PP & MP) report.

I share because it helps me in a way and some of you have been asking about them and also K.

So… PP saw a new Neurologist and the results came back yesterday. He has a form of Parkinson’s which is called MSA Multiple Systems Atrophy – a rare form of Parkinson’s.

http://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/basics/symptoms/con-20027096

I’m on my IPad so not sure if the link will actually work, for those who want to read further about it. The prognosis, needless to say isn’t good. Pop will deteriorate, as this disease affects the brain and spinal cord. His movement (which is now severely limited) will become worse. This disease will affect not only his walking, which he can barely do now, but also his muscles, his speech, his swallowing, amongst a list of other issues. Five in every 100,000 people are afflicted.

We don’t know how long he has actually had MSA but life span is approximately 7 years from diagnosis.

I cried last night reading up about it, medication will ‘help’ but not cure. I know being 88 he as they say has had a ‘good innings’, but it doesn’t make this any easier. We just have to make him as comfortable as possible and hope he doesn’t suffer too much in the time to come. He told me the other day, whilst I was pushing him in his wheelchair to their room, “I’m over all of this Ginger’ – I replied, “I know Pop and if you want to go, go… We will be o..k”.

Giving your parent, the one that you love so much, approval to just let go is heartbreaking, but I needed him to know.

MP is pretty much the same. There are the days of being cognitive and ok in her world, then there are the others.
At the moment she does not want to be showered regularly. Her hair is sticking to her head. Because of refusing to have it washed. I have asked her so many times, but she insists its not dirty…what can you do…

K is dating (men from the dating Internet site) it’s hard to keep up. She is stronger, but her memory has a bit to go before she is stable enough to look for work (which she can’t do till December). I got her to volunteer at an Aged Care Home, close to us. She has been once in 2 weeks, sadly getting her motivated is a huge task. Even getting out of bed in the morning. I knock on her bedroom door at 9, sometimes it 10.30 or later before she emerges. 😔 I have to give her, her medications daily or she’ll forget. It is like she is 9 again and mum comes to the rescue…that’s the role of a mum isn’t it?

Me? Well I’m doing alright considering. I had a tooth play up last week, the cold drink that sends you through the roof. I knew then the nerve was dying, so yesterday off to a new dentist and had it extracted (4 injections later). Luckily it was right at the back, as I refuse to look like Ma or Pa Kettle!

Services, I have done 93 and yes the wedding is on the 25th…the days are going too fast.

Thanks for reading..listening.
Hope all is well in your world.
x

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27 thoughts on “Changing – Havin a Chat

  1. i’m sorry about all that is going on. i think you are exactly right about giving loved ones permission to ‘go’ when they are ready, it is a very hard and powerful message to deliver. i’m happy you’ve so many services behind you, you must a seasoned pro by now. it is your calling after all – hoping that k begins to find her way back soon. hugs, beth

  2. It seemed you are slap bang in the middle of all this, Jen. I really feel for you. It’s hard enough when our parents require this attention, but a double whammy when there is a child as well. All I can say is that you are one of the strongest women I’ve ever known. Your family is extremely lucky they have you (huge hugs) xxxx

    • I think my life has always been slap bang in the middle of something or other. Bless ya, strength comes in many forms , perhaps I’m ‘tolerant’ . I appreciate your huge hugs, life is what it is and I have to go with the flow, hoping one day..one day there will be nothing I need to worry about. ❤️ xx

  3. Sorry to hear about your and your penguins’ health situations and your hardships. This is the beginning of the long goodbye, no matter how long it is. Want to give you a hug for strength. ❤ ❤ ❤ I know that won't help anything, but I hope a little support–virtual hug–or otherwise helps a little.

  4. Oh, as i read about your dear father, was I sad, Jen. It is hard not to get teary eyed when as a friend, were you saying this in person I would want to hold and rock you. Let it all out, so to speak.
    The rare kind of Parkinson’s does seen harsh, such dramatic changes and debilitating conditipns. Poor Poppa. There is some comfort in your mother’s oppositional behavior. Means she has some “fight” ( I call my Mom “spunky”) in her. Sorry about her hair. With my Mom she is like a toddler. I will not ask: I will say in a cheery voice, “It is time for your washcloth sink bath,” or a shower if I can get her there. I have a podiatrist coming every 6 to 8 weeks to help with her awful toes. (She wore heels, plus eczema). We pick our battles, hon.
    I am happy for K. 🙂 She is a beautiful young woman and deserves positive attention from men her age. It gets her motivated somewhat, except to get up earlier. I know there is hope, a promise for her life and new discoveries, too. Hugs, Robin off to bed at midnight plus 27 minutes. Zzzzzz.

    • Holding and rocking would be so comforting. Your support as others, is so welcomed and you know how much it means to me. Yes Pop won’t have an easy time of it and yes the opposite to MP in a way. It must frustrate him seeing her able to walk (with walker) when he no longer can. I don’t know how the staff handle her showers and hair washing. They can’t force her, I rang this morning and said have you been a good girl and washed your hair? She said yes, this morning when I had my shower. I said wonderful. She laughed not knowing that it had been a battle the last few weeks. I like the washcloth sink bath though, made me smile ☺️ K will get there, it’s a slow process and patience, which I hope Mr. S still will have in the months to come. Hope you slept well and now you will have started your day again. Hugs lovely. ❤️ X

  5. Jen, this is a lot to bear. I had a hard time checking the ‘like’ box because, of course, I know you are grappling with a lot. I just went through something similar with my very close Aunt, which I will eventually blog about, when I no longer feel the pain.

    It sounds like things are improving with K, though, so that’s a bright spot. You are dealing with all this so well. I am afraid I will not be as strong as things progress with my family. Sigh.

    What can I say? Given all you are shouldering, thank you for the time you have taken to visit me and comment. Hugs to you and your three dear ones.

    • It is a difficult time and I struggle more so for the fact of not being able to go and see them every day. Pops MSA is being managed by medications, but it’s so tough to see him ‘having enough’. I’ve always been quite strong, I inherit that from Pop. K is on the improve yes, it’s quite a long road. Thank you for your shoulders and hugs. You are welcome, I enjoy visiting and commenting when I can. I shall now hug you for your kindness Beth ❤️❤️

  6. Oh my lovely, You have no idea how wonderful it is to see you back to your writing, visiting with us and sending us your love. More strength to you. You will need much more as the days unfold. Diagnosis for pops is heartbreaking. My dear friend in Coffs, NSW just moved her mum into hospice care, her Parkinson’s is progressing fast.
    Happy to read Mum still has a sense of humor.. at least she had no recollection of the battle that went by… poor thing. It will be slow going for your beautiful K I know… not an easy road, but a strong and happy one in the end I hope.
    Oh fantastic that you did your 93rd service. And a wedding too. So proud of you.
    Well that email has not written itself to you. It is in my head of course. A lot going on in there, these days. xxx

    • Hello 😊 Sweety. Yes I’m not looking forward to the days ahead with Pop. He is struggling so much. Mum..well she’s in her world to a certain extent. Sorry about your friends mum….it comes to all of us , age, diseases. It makes me so sad to think of it all really. Another service tomorrow morning, then the wedding on Sunday (arghh) thank you 😊 K has now got a severe bout of tonsillitis! Her memory is still non existent, so still a bit of a road. Hmm yes email madam, if you please 😘 xxx

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