Sue and I at 7 Years

I am always looking for guest authors who will write about their life from a viewpoint that I don’t have or a situation that I haven’t experienced. Because I am selfish set on my own standards, I want posts to be sensitive, sensible and well written. The guest posts should never be whiny or condescending. We are all in this together, even though our paths may be different and we are all approximately equal in our knowledge and experience.
No one is an expert, except in their own life – and that’s what I want to read about. This guest post by Martin O’Brien encompassed all of the positive qualities I hope for in a guest and Martin was kind enough to allow me to re-post this.

A child of Primary Progressive Aphasia: March is the anniversary month of our new life. We are now 7 years old since the diagnosis of PPA for Sue in March 2011. Funny thing is that I stopped counting our normal ages at that point and began counting from that point upwards, checking off the remaining years we will have together. I have been with this group the entire time and post periodically but track everyone’s progress frequently and there is real heartache every week with people I feel like I have gotten to know. I watch their loved ones decline progressively (many examples) but there are also tremendous displays of courage & fortitude with people showing strength they never realized they had before this condition lays their partners or parents progressively to waste. My hat’s off to all of you. Well done

Back to Sue. She is PPA-7 now and when she was PPA-4 I spent a couple of months writing a private song about her that laments in one verse about “PPA a silent thief did bring, Stole our dreams in retirement spring”. Well that is certainly true but the song looking back was largely about not being defeated by PPA and was rebellious in tone. Of course, reality is now hitting me as Sue has declined a lot in this momentous year of notable change

• She has become fully mute. She can only laugh (a good thing) – no other sound and rarely acknowledges most people such that they find it hard to connect
• Has lost 90% of understanding and can only write one word at best (except birthday card greetings which she strangely remembers how to write)
• Suffered a fall and UTI that knocked her severely sideways – a really tough condition!
• We spent months trying to stop her arm from locking behind her head as she slept and she stopped being able to get out of bed by herself (now improving). She cannot communicate pain or even say yes/no accurately which is troubling
• She lost all ability to read (bought me a ‘Happy Grandma’ birthday card for Valentine’s Day) yet she still knows enough to buy the card in the first place. We spend endless frustrating hours with her wring a single word and us trying to construct what she wants.
• She now must have someone there for all meals (cannot operate a microwave or make a sandwich). Carers come 8 times a week and her family fills in the rest of the time, especially my daughters, Sam and Sarah, her sister Maggie and her friend Julie. They are all fantastic!
• Worse, she constantly over-fed the 6-year-old family dog, negatively affecting his health and she lost empathy for him. A few weeks ago, we reluctantly re-homed him for his sake and now I am trying to explain it to her (for 3 weeks now she keeps writing his name)

I know others are in a worse stage and some are earlier but I would say this about PPA. I know my (our) toughest times are still to come and already I am feeling the loneliness of living with a partner that is slipping away and it would be easy to feel sorry for us all

…. BUT, these seven years have been among the best of my life (not sure I remember the pre-PPA life well enough to compare). When you count-up the years you gain towards the inevitable end you know they are precious. PPA threw us together in a way that of course I would have preferred not to experience but it made us super-close. I think the positive tones of my PPA-4 song in which I say it will “never defeat us” are indeed sliding as PPA progressively wins this physical battle – but it will never break our spirit. I am not looking forward to the last few years, I know what’s coming from all your posts but I also know that I gain strength in my belief in love, in family, in friends and in sharing this time with you all.

Thank you, Martin

6 thoughts on “Sue and I at 7 Years”

  1. Martin, Kudos for you! Stressing what is positive about the caregiving experience is such a rarity–and yet so important both for your own spirit and for the lives of those you touch with your kindness and wisdom. I am on the other side of the journey now, treasuring the time my husband and I had together and wishing–always–that it could have been more. I wish you and your wife as much joy as can possibly be gleaned from the time remaining, and the ability to look back on a job well done.

    1. Thank you Maribeth. I also cling to the thought that when I reach the same stage as you I will be able to slowly relegate the memory of the tough times in the last few years to be replaced by ones dominated by all the great times we had across the whole of our time together

  2. My PPA journey with my husband was only six and a half years. I expected it to be longer but I am grateful it ended before he became bed ridden. During the journey I had a difficult time remembering life with him prior to PPA but when he passed away the memories came flooding back. Now I have a difficult time remembering the bad times of his PPA journey. Peace.

  3. Thank you for that perspective, Martin. I hadn’t thought of our journey in PPA years of age. Maybe the years prior to diagnosis are pregnancy…with a lot of morning sickness…before we know. My husband, the most wonderful part of my life, just turned 7-1/2, but he won’t make it to 8…maybe not even to next week. I feel like I’ve been the luckiest woman in the world to have him in my life, and I’ve tried to make this journey at least equal to what I’ve learned from him about love and life. For a few years I faced such unimaginable painful grief over what I was losing, but finally decided that I needed to turn my personal Titanic around to a course that was what I had. It would have been a disservice to him to not do that. So now I’m on a new course, one that is commensurate with him. And to help and support him as he completes this journey. Again, Martin, for your positive words and perspective. Greatly appreciated.

  4. I gained a newer perspective on my own journey with a loved one with bvFTD by reading about yours with Sue. Thank you for sharing.

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