I find it almost impossible not to worry about Anthony, especially in the evenings. I ring and speak to him every evening and he is often confused. Tonight he said he was still in town, that he was really cold, then asked me when was I coming to pick him up. I jollied him out of it by saying that the nurses would put him to bed soon and I reminded him to ask for an extra blanket. I managed to reassure him.
I could hear the grin in his voice when I said, “Okay, schnookums, see you tomorrow”, and he said, “Goodnight baby, I love you.” He was unhappy when I rang but happier when we finished the call. Phew!
A few minutes later I began to worry about him being cold, about whether the nurses putting him to bed would be gentle, about his nightmares and even about how tomorrow would pan out before I got in to town to see him. Usually I don’t let myself worry like this. Usually I make myself believe that he is okay because, as far as his physical care is concerned, he is in very good hands and the nursing lodge is superb. But I worry about him being miserable and I feel so impotent at this time of the evening.
The cold thing is yet another symptom of how the Parkinson’s disease has affected his ability to interpret things like temperature. He feels the cold terribly and has done for a few years now, even if it is hot. For example, he used to say his feet were freezing and I would feel them and they would be warm as toast. Conversely, he would sometimes say his feet were burning hot and I would feel them and they would be cool. It never seemed to match with the actual temperature and it became a constant night-time job when he was still home. It was always either a toilet or a temperature issue that caused him to call ‘Jules, Jules, Jules!’ until I got up and helped him out.
So that’s why I worry now. Does he call out for me in the middle of the night at the nursing lodge? Does anyone hear him? He isn’t good with finding or ringing his bell, or using the television remote or even dialling a phone number. One of the nurses says that he sometimes yells out, “You, hey you!” because he can’t remember anybody’s name.
I don’t usually let myself get worried in the night because it is too unbearable to wonder if he is okay. He should be asleep by now so there is a certain amount of comfort in that and he apparently sleeps very well now, so that is good. I don’t usually let myself miss him as much as I do tonight but sometimes I have to let the reality of what is strangely akin to a separation or a divorce to seep into my psyche and I almost stop breathing from grief.
He will never read this because his cognitive abilities are faltering, so all I can do is to say here what I say to him over and over every day: “I love you, Anthony.”
And please, God, don’t let him be cold.
jmgoyder 
Sending you love, of which you are already so full.
Thank you, Magnolia!
My Grandma has Alzheimer’s and I used to be one of her caregiver’s after my Grandpa died. She is several states away now in a nursing home and I miss her a lot. I can’t call because she isn’t really able to talk on the phone anymore and probably wouldn’t know who I am. I feel your sorrow and your love for your husband. Hang in there and enjoy every day with your son.
Thank you so much for this lovely comment!
I hope so too. xxx
this tears my heart… the disruptive results of Parkinson’s that not only has an effect on the sufferer, but on the whole family and all the friends… such an undiscriminating disease… Hugs Julie… I wish I could say more for you to have comfort and ease…
Thanks so much, bulldog – the encroaching dementia is doing my head in just as it is doing his head in but differently obviously. How long will this suffering continue? It could be years. I need a new set of armour!
Oh that you do Dear that you do…. if one could only walk into a store and buy it…
Yes – if only. There are worse things than our situation but it is still difficult. Thanks for your lovely comments.
Oh Julie now I feel all weepy. I really understand what you are going through. Two months before my dad passed the family decided that I needed a break. Not unlike the situation with Vic now… I was stressed out of my mind even though my sister and Vic assisted his caregiver for the 10 days. He did not even realize I had been away when I got home! Your Antz is not that far gone… Now I have started stressing about Vic – will she be comfortable enough with her nurse? Will she be honest with her nurse about exactly how poorly she is feeling? What about the boys? It is a vicious situation because we love. We can only do our best!
Yes and I am learning to trust in other people’s care of Ants the way you will have to with Vic but not easy is it!
Your warm thoughts will surround him with love and light. Every night. Don’t go there in your head.
Ok – thanks dd!
Yes, I’m sorry, dear one. My father-in-law just killed over one day, but Dad took the loooooooong Parkinson’s road. Curses! Oh that we would all live and die without the sufferings of disease. I’m sorry. Sending BIG Texas love across the waves…
You are so kind. And you are so right about the looooooong Parkinson’s road – argh. Sending hugs back.
BTW – read your post earlier but as I’m not living there and know nothing about these politics I didn’t comment. This doesn’t mean I’m not fond of you – hehe!
sometimes I do not know what to say — I am so sorry you are so sad and missing your husband–it is like a separation–but one you didn’t want – (hugs)
I’m sorry that this disease came to your family 😦
I think it’s so sweet how much you love your husband. Your love for your family really shines through in each and every post. Tonight I will say a prayer for you husband too, that he will be warm and rest well.
Thanks Fringy!
Julie, I understand your worries – but I’m sure that when Anthony sleeps sound when he is in the land with the fairies. I think you should have a talk with the staff – so you can put your mind to rest. Because you shouldn’t worry about that.. when you’re in your bed. Really feels for you .. Ant and Ming – what a situation your lives have turned out. Life isn’t fair. A big to you .. from a big warm heart up in Sweden.
Thanks Viveka.
Oh, Julie – what an awful thought. I’m sending you and Ants bug warm *hugs*…
Thanks Dianne
I echo that with you my friend…God please don’t let him be cold.
Thanks Diana.
Talk about making me get all chocked up………………sometimes it isn’t easy to just trust that your loved one is being taken care of in a way you want……….
Hard stuff – thanks Joanne!
remember the saying worry is only bringing clouds on a sunshiny day, then you send him your loving warmth, my love. Feel that sunshine, every night. Even that will tear at your heart julie as you are apart, but it may help you stress a little less my love. Big hugs and love, hi to Ming xx
That is a good saying – thank you!
I have nominated you for the Beautiful Blogger Award in recognition of your great blog, love for your family and the courage you display in this difficult journey you are all on. I sincerely hope you will accept this award. http://tersiaburger.com/2012/10/24/beautiful-blogger-award-2/
Thank you for this lovely gesture. I am a bit peculiar with awards so you are in for a bit of a surprise (a nice one!)
My prayers Julie 🙂
Thanks for that Ritika!
this is breaking my heart……………..my friend Julie, the nights are always the worst, and even for me. day hours i am busy, night hours i wish i was not alone, i wish i had a mate, i wish i could fix Al, nights are dark and lonely, we share the same thoughts at times……….love you my friend
You have it way harder than me, kiddo!
This breaks my heart…
Mine too – every single day and night – argh!
(((O)))
ღ˚ •。* ♥ ˚ ˚✰˚ ˛★* 。 ღ˛° 。* °♥ ˚ • ★ *˚ .ღ 。*˛˚ღ •˚ ˚…Lots of virtual hugs coming your way… in my prayers too! ˚ ✰* ★˚. ★ *˛ ˚♥* ✰。˚ ˚ღ。* ˛˚ ♥ 。✰˚* ˚ ★ღ ˚ 。✰ •* ˚ ♥
Big hugs. I wish this was all different for you all…
This made me so sad. I feel so sorry for you and Anthony. Stay strong, Godzilla.