The swallowing reflex is something that many people with Parkinson’s disease eventually lose and recently it has become more and more difficult for Anthony to swallow food, drink and especially the many pills he has to take. This morning, after a lovely visit from members of the family who had to travel home today, he said his feet hurt, so I asked for panadol and the nurse brought the pills in just before lunch was delivered.
He was given the panadol inside a spoonful of custard and I told the nurse that I would make sure he swallowed them but 15 minutes later, while his lunch got cold, he kept trying to spit them out and, no matter how hard I tried, with little sips of water and gentle persuasion, he just wouldn’t/couldn’t swallow the pills.
I got so angry with him! Furious, and in tears of frustration, I kept saying, “Just swallow, Ants, SWALLOW!” But he just kept sort of munching on the pills and trying to get them out of his mouth. I kept pushing them back into his mouth and giving him sips of water and he kept resisting me and kind of trying to push me away. Afraid that he might choke, I fought back and yelled at him “Swallow it, for God’s sake!” and finally he did after which I fed him his lunch which he swallowed easily – ironic.
It is a long long time since I have expressed anger towards Anthony so I felt disgusted with myself for having done so when I know he can’t help this sort of thing.
Later, once I’d calmed down and he’d said “Sorry Jules,” I asked him why he wouldn’t swallow the pills and he just said, “I thought they might be poison.”
“Why the hell would I poison you? Don’t you trust me?” Yes, my voice was a little shrill.
So I guess we are now entering yet another phase: inability to swallow, paranoia, extreme confusion. I reported the incident to staff so they are aware, and the doctor is going to review Anthony’s meds in order to find something easier to swallow.
For the remainder of the day, after Anthony and I got over our tiff, he slept in his armchair and I held his hand. Every now and then he would drowsily reach out to hold my other hand and whisper, “Sorry, Jules” again.
This previously robust, macho, laughing man of mine – my hero – now reduced, diminished by this rotten disease, and yet still more concerned about me than himself.
jmgoyder 
I pressed the ‘like’ button, but I can’t really LIKE this new development at all. I don’t know how you ‘keep your cool’ at such frustrating events, but you seem to handle them like a champion (99% of the time).
You certainly are a Champion Among Men !
Lots of hugs to you
Vicki
x
I guess I was just having an off day! Thanks Vicki.
i sorry jules. the swallowing reflex and the fears are stages that come over time, perhaps they can give him a liquid pain med, as even with therapy, it will become more challenging over time. frustration is understandable, on both of your parts.
Today will be a better day.
I can’t bring myself to like this post… and can only say you are one very strong and brave woman… and I admire you beyond words…. Sterkte Jules…. Sterkte….
I love that word so much! Sterkte
I love his love for you. And yours for him. I understand your frustrations Julie, they make sense seeing as how it must be based out of your love and fears.
Yes, have only just realized I was scared.
When he realizes how hard it is for you, I’m sure it’s difficult for him…. Difficulty swallowing is something I can identify with, as that’s what I’m currently having tests for… and food sticking part of the way down. It is of course more extreme for Ants and pills are one of the hardest things to manage and certain foods of course. Anyone watching someone they love struggle in so many ways, is angry .. not with the person but with the disease and what it’s doing to the person they love… Diane
I do hope they find a solution for you; it’s a ghastly problem.
This so reminded me of the sad path the disease took with my Dad. With tears in my eyes, I relived that pain and frustration. You express it so well. Your love is evident.
I guess I am feeling a bit of dread now, knowing what is coming.
Anger is fear and frustration is helplessness finding a release… very understandable. If you were perfect all the time, you wouldn’t be human. You wouldn’t be his Jules.
I didn’t even feel the anger coming – it just hit me!
we are all behind you–many of us aware of some of the things you are going through and we care about you–
I am very lucky to have you!
In your loving compassion, you remind my heart to beat in love even when sorrow and fear embraces it.
Aww thanks Louise!
Heart breaking for you.
Thankfully this kind of thing doesn’t happen often between us.
Just said a prayer for you both. Been following your blog for quite sometime now. I really admire your strength amidst trials in your life.
Thanks for your kindness Arlene.
Aww, Jules, another love story post… HUGS
Diana xo
I will be sweetness and light today haha!
It sounds like two things going on here – yes, he has difficulty swallowing, but he was stubborn. You didn’t understand his paranoia at that moment, perhaps. But your frustration was because he needed those pills to feel better. This is so much like a parent! You needed the result and when cajoling and pleading didn’t work – you became firm and stern. Please give yourself a pass on this. It is hard to be perfectly devoted and sweet when the pressure is so heavy; you are gasping from that load and all the stress. Look outside at yourself and then put your arms around yourself and squeeze. Feel my hug, too. You are going through so much and suffering deeply. Please don’t blame yourself for being human.
You always lift my spirits Judy!
Oy – you gave me an opening for a pun! Better to lift your spirits than for all of this to drive you to drink spirits! Hang in there. The caregiver needs to be extra gentle and caring with herself so she can keep going. 🙂
This is so hard. Be gentle with yourself, your reactions, because it’s my humble opinion that you can’t help them anymore than Ants can help his reactions. That’s one of the tough parts of being human, those emotions get a grip and the control switch is nowhere to be found. Sending you a very warm, special, cyber hug and hoping that all the love being send/given to you from your cyber friends, your family, your friends, bring a warmth to your heart that helps ease these days ahead. Love, Paulette
You are a gem Paulette!
I don’t like this newest development, Julie, but I do like the obvious love you have for each other. ❤
I will turn back into Florence today!
oh Jules the frustration must be overwhelming for you and so confusing for Anthony. I remember trying to wean my son from breastfeeding and feeding him rice cereal and he would spit it out and cry. The frustration I felt would make me cry, I realize that this is so tiny compared to what you and Anthony are going through but I wanted to let you know that I have an inkling of what you are feeling. Big hugs Jules xoxox
Yes, exactly the same feeling!
Extremely frustrating – and yet you did not give up. Shows your continued love for him 🙂
He fights the staff sometimes so now I know what it feels like.
Try crushing the tablets and mix it with custard or yoghurt. Be gentle with yourself. You are scared. It was a normal reaction. Lots of love xx
I hope he doesn’t remember the incident today!
I cannot swallow pills so I always take soluble Panadol – a bit expensive at 4.25 GBP but much easier to take than pills.
If he has to take a lot of painkillers you can get soluble paracetamol a lot cheaper than Panadol in supermarkets or discount chemist chains. When I had toothache from a cracked tooth a few weeks ago I took the discount brand as it was much cheaper and was just as good as Panadol.
Hopefully they will use the liquid version from now on.
So much easier.
It’s so stressful to try to help someone when they’re making it difficult, for whatever reason. I think a flare of temper is completely understandable.
It caught me by surprise!
What a terrible thing for you to have to endure. My only advice is ask if his pills can be crushed and if not, ask to have them made in liquid form
With panadol, yes, but unfortunately the slow release PD meds can’t be crushed or they work too fast – argh.
too bad, but if the problem continues, they will have to find an alternative to Panadol
It is so sad to hear that he is having trouble swallowing now it is something we take for granted maybe where possible he should be have liquid medication you can get liquid pandol given with a syringe squirted to the back of his throat might make it easier for him to swallow it.
Hopefully they will use liquid form from now on.
it’s so anthony to care about how you are feeling. you can imagine how awful he must have felt, like he had made a fool of himself. ughh i hate this, i know how he feels and want so much to make things better but in my heart i know that you don’t need that. you completely understand. just another reason why he adores and loves you to the moon:)
We are two sides of the same coin and that means a lot to me.
You are such an extraordinary writer, Julie. Thank you for all the gifts — painful, hopeful, and otherwise — you include in each post.
Thank YOU!
I feel so sad for you, Julie. My mom also has days when she doesn’t trust even her closest family. It’s really heartbreaking. *hugs*
I suppose the experience is preparing me for what is to come.
So hard the path you are on. And just when you think you have it down, the rules change. 😦
Yes – so true – I thought I had it all figured out ha!
My sister used a pusher/plunger syringe type thing to give Mom her meds in fluids. A lot easier, if it would for you. Good luck!
Good idea – thank you!
I hope I (or Bob) am that brave when the time comes. We can never know our ending days and I just hope that one of us is as strong as you have been when our time comes. Don’t be hard on yourself. You are coping better than most of us would in a similar situation.
xo, Lynda
You would cope.