It is hard to describe the dread that I try not to feel when getting Anthony home for the day. Despite the regularity of medications, advanced Parkinson’s disease (with a bit of dementia thrown in for good measure) can rear up in all sorts of unpredictable ways, minute by minute, hour by hour, day by day. For example, I never know if Anthony will be able to walk or not, talk or not, eat or not, go to the loo or not, understand or not – and the list goes on.
The other dread is of Ming’s plummeting mood when Anthony comes home. A relationship between an 18-year-old son and a 76-year-old father is not necessarily easy even without the addition of PDD so, when Ming tries to communicate and Anthony either doesn’t understand or doesn’t respond, Ming gets terribly hurt and wants to withdraw. I understand this and rarely try to manipulate the situation in order to make everything okay. Instead I let Ming go to his room and do his own thing because, to be honest, I too, want to withdraw from an Anthony who is mostly silent and unresponsive and often asleep.
Of course there are beautiful moments of mirth and joy and love, but they are few and far between now because Anthony has become very hard work. Walking him across a room can take forever if his feet aren’t working, conversation is staccato with miscommunication rife because Anthony often doesn’t ‘get it’. Ablutionary situations are very difficult, both physically (me lifting) and emotionally (Ants having to be helped).
The other thing I dread is Anthony’s inevitable question: “Can’t I stay here for the night?” where I have to say, “I can’t – you are too heavy and you need two nurses to help you in the night.” I have tried to deal with this question via humour, honesty and sometimes anger, sometimes tears, but he keeps asking me, over and over again, during every visit here or at the nursing lodge, during every phonecall. Sometimes I yell at him to stop torturing me but mostly I handle it calmly because I know he doesn’t understand/accept how ill he is, whereas I do.
This afternoon, we are doing something different. Most of my family – my mother, brothers, multiple nephews, nieces and various partners are gathering at my mother’s house for our traditional (but belated due to geographical distances) Christmas Eve dinner. I wasn’t going to get Anthony because it’s late in the day and I wasn’t sure if he’d be up to it and am still not sure. Then I thought I have to try. So the wheelchair taxi is picking him up from the nursing lodge at 5pm with an arrangement to pick him up and take him back at 7.30pm (at which time he is usually in bed).
Anthony is very close to my mother, brothers, sisters-in-law and their children so I hope it works out but, yeah, I do have a bit of that awful dread about the logistics.I am also excited! Of course it won’t all go perfectly – nothing ever does – but, on the other hand, you never know!
jmgoyder 
it is good for all of us to witness your courage…..thank you….
It is cowardly courage if that makes sense!
Jules, you know I have been following you for about a year now. I watched this story play out act by act. And I know you don’t want to here this. email me lifeisabowlofkibble@yahoo.com
Just emailed you.
i can never truly know what you are going through. although while nursing i saw the effects of this disease on the patient and their families it is not ever the same. oh sure there are some similarities just because the disease has it’s markers, but it doesn’t affect all people the same.
all that to say that i so admire your hopeful attitude. i know you have to accept certain hard facts yet you continue to strive for the best way to move forward.
i am hoping that your celebration goes well. as far as anthony repeating his request, i can not imagine a more difficult predicament. of course i have managed patients with similar issues but i got paid to work with them and i knew at the end of the day i was going home and someone else would come on shift prepared to answer the questions.
What an amazing person you are! Thank you.
My mother had Alzheimer’s her favorite words were “What am I gonna do?” “Peko, (my nephew) what am I going to do.” She forgot who my father was and insisted she was not married. After 50 years of dad standing by her she shunned him. It just about killed him and crushed me to see it. It was hard for me to see her even though I knew it was just the disease. I truly admire you and am sending prayers your way. I hope you had a blessed day.
Thank you so so much for this generous comment.
I hope it all went well.
It went okay – I am gonna write a post about it. Hope you are well and thank you!
Oh Julie ~ so much feeling for you these days. I know it’s getting harder and harder. You … always stronger and stronger. I hope this plan works… 2 hours seems reasonable. May everyone be in good spirit and may some joy be a gift to the entire family! Love you ~~ x
It was a success until he faltered and I had to get the taxi earlier and then I broke down in tears – embarrassing.
I also admire your hopeful attitude.
You just never know how each day or visit will pan out. Unpredictability makes you tense and anxious.
This the time when you have to Live in the Moment. Be in the Moment and accept whatever comes your way – good or bad. You’ve been a nurse and know it’s going to get harder and harder to put on a bright front and appear positive.
But do keep in mind, that these social occasions are about Family & Friends – the know the reality by now. They know Parkinsons and Dementia will deteriorate. They can rally around and take it in turns to watch & listen to Anthony, so you can have a break and do some socialising too.
Try to look at these intermittent social get-togethers as a chance to Have a Break. I’m sure Ming does. I’m sure nobody expects you to be Positive all the time. Nobody expects you to be constantly by Anthony’s side carrying the load by yourself when out socially.
Hope you have a wonderful day. Nobody will notice if you down a few beers or wines to take away the stress. Sorry all you teetotallers reading this, but a drink or two is good medicine (sometimes) in my book.
The couple of hours that Ants was there were great and the drinks were a great solution! Thank you for understanding the whole situation so well and for your generous words.
Hope it all goes well!
Not too bad….
These stories all have a familiar ring to them for anyone who knows someone who suffered from one kind of dementia or another. Bottom line, It’s never easy and the caregivers have to tough it out. But we try to support each other the best we can.
It is becoming a more and more familiar story/situation for so many, alas.
Julie, I can’t even image what you go through when it’s down to Ant’s situation. A tough decision that goes against your heart and soul … I hope of all my heart that you will have get a good day together all 3 of you. You’re in my thoughts.
It was a 50% success.
Aj-aj!!!!
Yes the dread must be aweful, how has the dinner gone was Anthony ok.
I know I hate it when I go to see my nan and her eyes are blank……….
It was okay – will post about it tomorrow.
I hope for ‘easy’ and laughter..I hope for arms around you to hold you and help you, I wish for love to encircle you and Ming and Ants so that if it is an ‘easy’ day it is made that much sweeter and if it is a ‘difficult’ one it is made that much more bearable with our family around you..
It was certainly beautiful to have my family’s embrace.
the fact that you keep trying just shows how strong you are–but it sounds like someday soon you are going to have to stop trying to bring Anthony home and make the best of the situation at his new home
my heart goes out to you–I so hope things went well for you
It worked out pretty well but I will not be doing that again!
don’t blame you
Life can be so hard, Julie, and your courage humbles us all. Hope the day goes all right and you get some glimpses of the old Anthony to keep you going.
There were some glimpses and I hadn’t thought about this until I saw your comment – thank you!
Even though I saw the word dread, I still felt your brave and hopeful attitude shine through your post. In a way your situation with Ant is much harder than my aunt’s was in France. My uncle had his third stroke and fell into a vegetative state and my aunt had him at home for 22 years. She had nurses daily and physical therapist and doctors, she also had the hospital take him for two weeks out of the year so that she could go on vacation.However she never had to explain to him the why’s and the why not’s, she could have done otherwise than to keep him at home. He could have gone to a nursing home but she didn’t want to, if he had been vocal who knows how it might have gone. You are to be admired and that you share all this with us, your readers, is a gift to us all.
I don’t know how your aunt did it – amazing! Thanks Laurie
Jules, you are both a remarkable wife and mother. You seem to have the patience of a saint always giving 100 per cent. Me, I would have thought he can stay at the home whilst we have our belated Christmas Eve dinner, he doesn’t know, and it will be much easier for me and Ming. I do hope that it worked out well.
Originally I was going to leave Ants out of the equation but changed my mind and, despite the difficulties, it worked out ok.
Nothing ever goes as planned even in families without the extra challenges you face! Have a wonderful day – you are amazing.
You are so right about nothing going as planned – but it was ok.
I can only imagine the emotional and of course physical difficulties that you face with Anthony. I know when my mother had to be placed in a nursing home it was very difficult as she slowly deteriorated to where she couldn’t speak or acknowledge even our presence. I never knew what was in her mind…and whether she did or didn’t know who we were or that we were even there. So I just talked to her as though she did. After all she might have.
And I can see that you do the same. It is harder for younger people to take when there is no response ….my children had a most difficult time and eventually stopped even going to see her. It was too much for them. So I understand as you do why Ming has trouble.
Hope today goes okay…..Diane
Ming has a lot of trouble with it so I am glad to hear he is not alone in his reaction – thank you.
I hope the Christmas Eve dinner went well, that it was a joy for you. And I think Ming’s doing really well with his dad. Teenagers are all about life and possibilities–the future. It’s hard for them to deal with age. Ming loves his father, but has to have trouble with his health problems. My grandsons are awesome, but they can only take so much time with my mom and her Alzheimer’s at Christmas dinner. But they still show up. I think that says something right there.
Yes I think sometimes I expect too much from Ming.
You are one brave lady Julie! Hope it went okay.
Okayish!
Oh Julie, what struck me was all the ways you have answered the question ‘Can’t I stay the night?’ That would be so difficult – that he asks again, & again. I think you’re very strong, & have a lot to deal with – you know, including Ming’s plummeting mood.
I really hope it all went “perfectly” (I’m sure it’s POSSIBLE!)
Happy new year, to your lovely family – peacocks”n’all 🙂
And to you my friend!
I read this last. Should have read it first. sorry
I’m sure it will go well, though you might cry a little (reading these posts backwards helps me to see into the future).
Julie, your courage and resolve continue to amaze me. Thank you for sharing all that you have. Bill
I do hop it went well. Julie… be strong! an it’s not easy for young adults and adults/parents in relationships anyway…