As Anthony’s Parkinson’s disease (diagnosed several years ago now) has worsened, it has become increasingly difficult to take him out, or bring him home from the nursing home. For a few months last year, I relied on the wheelchair taxi because he had become so heavy to manouevre. Then, with some tweaking of his medications (by his specialists and doctors) and with a renewed sense of determination on my part, and special attention to timing, I began again to take him out by myself.
The timing of Parkinson’s disease medications is vital. If Anthony doesn’t get his 11am pill, he is paralysed by noon. The staff at the nursing home have been brilliant at getting this right. This means that if I pick him up for lunch he is able to walk (using a walker) to the car, get in with just a bit of a shove from me, get out again with a 1, 2, 3 pull up from me, walk into a cafe or whatever, eat some cake, and walk (using the walker again) back to the car.
His next scheduled pill for the day is 4pm but I really think it should be 3pm because that is the time that he always begins to falter, with his words, movements etc. so, if he is home, I give it to him early because we have had some extremely difficult situations where I just cannot get him to move his feet at all, let alone walk. I guess we are getting to the stage now where I have to bring both the walker and a wheelchair with us if we go out.
The person who most inspired me to take Anthony out more is Terry at http://terry1954.wordpress.com/
Terry has been looking after her brother, Al for years and Al doesn’t just have PD, he also has MSA (see Terry’s blog for what this is like). Al is now bedridden and on the brink of death with Terry constantly by his side. She has always inspired me in the way she copes with pragmatism and prayer in equal amounts.
But, before Al reached this stage, Terry used to to take him out and about, to his favourite shops and restaurants. I read about these escapades with mixture of delight and admiration, but what really struck me was how much joy this gave Terry herself. She is the person who gave me the impetus to take Anthony out and about more.
And, if I get the timing right, Ants and I can still have a rollicking time (well sort of!) However, here is where Terry and I are different; she took Al to places Al liked to go to (she is unselfish), whereas I now take Anthony to places I like to go (I am selfish).
However, that is my tip: instead of seeing it as a chore to take someone with PD or any other disease out of the nursing home for a bit of a break, think of where YOU would like to go. That way, the outing is transformed from a job into a joy.
Just don’t go to the beach (wheelchairs don’t do well on sand!)
This post is dedicated to Terry and Al.
jmgoyder 
What a terrible disease. I don’t think you’ve selfish at all for going places you enjoy.
With the right balance of meds the disease becomes less unpredictable if that makes sense. You battle much worse Trisha, especially in terms of unpredictablity. Your blog, and a few others’ draws attention to something I had no awareness of before. Thank you for this and for your friendship
This is a beautiful tribute to Ants and Al and I praise people such as yourself Julie for the hard work a caregiver takes on for the love of your loved one. I know for myself, love for my brother is what has brought me through this and will carry me to the end. Terminal illness is terrible to see and bear, but the blessings of finding awesome friends like yourself is the light of the ugly. Big hugs and I love you my friend
I cannot stop thinking of what you and Al are going through right now. Love to you, Terry.
hugs
Ditto!
I don’t think anyone could call you selfish Julie 🙂
Well I am in the sense that I now choose what we do, where we go etc. Lucky Ants is so easygoing!
You could be doing it all without him though 🙂
You and Terry are both an inspiration to me!
You too!
Great post and dedication. Bless your sweet heart.
Thanks my lovely friend!
Thank you for such advice. I hope I never have to use it, although I feel guilty every day I don’t go to see my Mom in law. Maybe thinking this way I might be more willing to drive down to visit her. Thanks for the post.
Once I get him in the car, it’s quite easy to go for drives with the music blaring (my music!) and even go to lunch sometimes. Home is hard work so I kind of prefer to go elsewhere – it’s always a bit of an adventure in a strange way!
That’s the way to embrace it; as an adventure. Sort of ‘let’s see what mini tragedy I have to deal with today.’ lol
Terry has done a marvelous job with and for Al… and my heart goes out to her right now… and you are so good with Anthony…. and I know that he knows that you love him very much ..as does he… you… (I just wrote a mouthful didn’t I?) anyway I mean it.. Diane
I liked your mouthful very much!
We all need inspiration for hard parts of life and Terry has provided you a great example. Well done her, you, Al and Ants.
Terry and Al are going through the ghastliness of encroaching death – I salute them both.
This is a brilliant share… I love that you take Ant out and about and now to read about Terry and Al, it is truly inspirational…
Terry is amazing.
No one could ever call you selfish, Julie.
You’re simply a woman who loves her husband and have become (over time) pragmatic.
The sooner one faces up to the reality of their partner’s condition, the better one can enjoy the limited time together. Since you enjoyed the same things in the past, surely it makes sense to ensure you both have an enjoyable time in the present.
Now that you’ve become in tune with Anthony’s good times and how they relate to his meds, I’m sure there will many more enjoyable outings.
Yes it is getting easier to figure out when and where and how! Wheelchair access can be a big problem.
Fantastic post on care and love.
I wish I knew what I know now two years ago – ah the benefits of hindsight!
I went to see a little lady who has Parkinsons. She walked with a walker as well. She got up to go through the living room and asked if I saw her “little box”. I had no idea what she was talking about. She explained it, then showed me what she had come up with. Her own little tip. She couldn’t explain why it worked, but for her it did. She told me that she couldn’t “tell” her feet to move, to take steps. But, if she was “frozen” she discovered her feet would “kick” the box in a step motion. We found the box. Put it down in front of her as she got up on her walker. Sure enough, her foot would kick the box, moving her forward. She had somehow discovered when her feet would not take a step, they would kick the box. I don’t know if that would work for anyone else.
I appreciate your posts so much. You’re so honest, full of love and zip. Thank you.
Oh I love this! Sometimes I tell Ants to pretend he is walking up stairs – I will try the box idea now. Thank you so much Colleen and please thank your friend for me too! She sounds like a gem.
Oh I hope it works! SOmetimes I had to scamper after the box if she kicked it out of range. But she was so brilliant to have figured that out. I hope it works!!!!! 🙂
Selfish is definitely not a word that can ever be associated with you Jules. I have read Terry’s posts and she is amazing, caring for her brother Al. I am so glad that you both have each other as friends. I am sure that Anthony is so happy to be with you that he doesn’t care where you two end up as long as he is there with you for the ride. You and Anthony have one of those grand love stories, it is magical. 🙂
Julie, You are the last person the word selfish could be used to define. So you can just stop that. Each day when you show up at the home, you give Ants immediate and total inner peace. Even those days you have to yell to be heard, even those days, when you walk back to your car in tears, you have given Ants a joy he can’t measure. Each day trip, is so so special, even a tiny little cheating on his meds are worthwhile. Oh to be loved as you love Ants. What a special gift. Please take care, Bill