This morning, before 7am, I got a phonecall from the hospital where Husband is and the nurse wanted me to talk to him and calm him down because he thought he was being held prisoner somewhere and was very disorientated. On the phone, I couldn’t convince him so I went straight in and only came home a little while ago, after nearly 10 hours of sitting with him.
It was a very peculiar day, because one minute Husband and I would be having a laugh about this morning’s ‘episode’ where he terrorized the nurses with his walking stick and then tried to actually run away, and the next minute he would ask me why we weren’t staying at his nephew’s place in Perth since it was so close (we are 200 kms from Perth). Lucidity and ludicrousness competed all day, so I’m glad I stayed so long because this is new and I needed to see it. Tomorrow I will not go in because, as Husband is on 24 hour ‘watch’ now, my presence there means the nurse who would otherwise be watching him can do other jobs and I really think this new confusion needs to be seen by a nurse and reported to the doctor.
At one point, Husband asked me again where he was so I told him and he said, “I think I must be going mad!” I reassured him of course but a bit later, when this situation repeated itself, I said, “I think you could be right!” and he reached out his hand and squeezed mine very hard with a big grin on his face, then fell asleep.
When I finally had to leave to come home, I kissed Husband goodbye and went to find a nurse, but while I was speaking to her, I heard Husband call, “Jules!” so I raced back into his room to find him trying to clamber over the bedrails. I quickly settled him back into bed and he put his arms around me and pulled me close, kissing me repeatedly on the lips, cheek, neck and whispering, “I love you more than anything in the world”, to which I replied, “Same here!”
I left the hospital and came home a bit too stunned to shed any tears.
The following is a photo of a photo I got framed for Husband for a Christmas present a few years ago. The original photo was taken around 35 years ago with Husband on the left and his fantastic mother on the right. This was the same year I first met Husband and fell in love – not just with him, but with his mother and the whole family!
jmgoyder 
Such a terrible time for all of you. So sad to read, so it must be many times sadder to experience.
Gosh, I remember my Dad’s hallucinations. It is very scary when the Parkinson’s takes over the mind and the true person is trapped inside. What a lovely picture of your Hubby and his Mother. Keep reminding him of who he was. – Lorian of DogDaz
Beautiful … (now there is a change from wonderful) Husband will live on as your son looks so much like him hey … amazing … there are the seeds to a H M&B … how’s the romance novel coming along anyhow Jules??
Can see where your son gets his height from 🙂
What a bittersweet day 😦
Hang in there. We’re rooting for you and your family.
Okay and many, many thanks!
Be strong Julie!
Okeydokey!
wot a gorgeous strapping fella you’ve got there lol. Love you.
Yeah and you have two of them! LOVE your blog!!!
I know these are hard times, but you are so lucky to have a love like that. I do hope you write the novel / memoir.
I hope I write it too – ha! Too busy at moment.
Incredible story Julie… your husband sound like quite a guy. Yes – can see in the photograph he and son do look alike! Hang in – you are loved!
I never realized they looked alike – I will have to have another look at that photo! Thanks again RL – you are incredible!
I think you’re right to let the nurse spend enough time so she can let the doctor know her observations. Maybe he needs some meds to keep him calmer. I don’t know. But regardless it’s going to be a rough time for you both. It would be easier without the moments of lucidity where he remembers that he loves you so much. Then again… aw, it’s tough.
I just hope they figure it all out! Thanks anneli!
When you have no words… you pray.
Julie, I have no words…
~ Lynda
Thanks Lynda – today was very frightening for both of us. It is awful to now be home and he’s in there and I don’t know what is happening – yes, I will pray. Juliex
(((O)))
Oh sweetie that you share this is such a gift. ( I see this as a familiar future for myself) I am stunned with how much you are left to deal with on your own. I believe the nurses are looking for you to make their shifts easier. Not because they are bad at their jobs but they are human too. It’s really not about them, but about you and husband. I’m so proud of you and your strength to know that staying away is what will serve husband’s care in a better way. Damn right the doctors need to be made aware of these changes. It may be old hat to them but it’s all brand new to you and husband and son. This is and has been exhausting for you both. Although husband going in and out of lucidity is a blessing for him in many ways; It’s that you have no way away from it is what needs to be remembered. You need these breaks Jules, if not you may be the one who is needing to break. How could you not?
May I ask if there is a Parkinson’s support association where you are? I’ve taken the assumption that you are incredibly overwhelmed at times and so stuck my nose in where it may not be welcome. Here are two web sites with info for caregivers. Family living with. Maybe connecting with another wife who is also living this would be helpful in terms of tips from someone who really knows.
http://pwa.tfgcms2.com/services/partner_carer
http://www.davisphinneyfoundation.org/
Please forgive me Jules if I over stepped. My intent is to help not make things harder.
I’m just awe of you and your lovely hard honesty. Thank you.
Thank you Baroness, although I think you are being hard on the nurses! Thanks for the links – yes there is a support group etc. here but I don’t really like that kind of thing – but you never know! I really appreciate your comment. Juliexxx
Suffering from memory problems, I can relate a little to your Husband. There was a short time where I felt I couldn’t trust my mind. Very scarey. You guys must have some wonderful memories after 35 years together? My husband and I have been married 33 years this year. I don’t know what I’d do without him.
Keep up the work, and make sure you take time to work on your Novella!
Oh, the novella – I forgot about it again – thanks for reminding me!
We’re sorry you had such a taxing day. You are wise to find the humor in a tough situation when you can. *Hugs*
Bella and DiDi
Thanks Paws!
Oh sweetie, my thoughts are with you all. Hang in there hon!
*big hugs*
Thanks Sonel!
Hi,
That is a great photo of Mother and Son and I love the photo frame.
I agree with what others have said, you should think about writing a book, it would be interesting.
Oh! Thanks for the encouragement!
His medication may be contributing to the hallucinations. He’s away from home so it’s not surprising he is a bit disorientated.
Yes, the meds are terribly difficult to get ‘right’.
The 4 H’s, eh? 😉
Your description is chilling, your courage and humor moving.
Thank you.
I agree with RL that Husband and Son look much alike!
I’m surprised this can be seen from such a crappy photo – interesting!
I didn’t mean the photo itself was crappy – I just meant my photo of the photo….
I’m crying for you, friend. Asking God’s blessings and comfort on you all. If you ever want to email — dcwisdom@yahoo.com
You are kind – thx!
Julie –To be standing at the end of such a day… Wow! Your inner strength is awe-inspiring! Make sure you nurture it and yourself. You are wise to step back and let the doctors and nurses do their job.
(And I hope this comes across in the positive way I mean!) As much as my heart breaks for you both at what you are going through, in some perverse way it almost seems to be a affirmation of your true and deep love for each other.
Loved your comment – very true! The day wasn’t that gruelling as I just sat there most of the time reading 500 dreadful magazines and talking to Husband on and off to make sure he knew where he was. It was a bit surreal.
This must be so hard on you and I know it will only make you stronger because you don’t have a choice. I can’t imagine how hard it must be to see the love of your life slowly fade away. What you and your husband feel for each other, THAT really is true love. I’m jealous!
No need to be jealous – you have it now and I had it then!
Haha, I really don’t! I recently asked my husband to leave after spending the past few years unhappy. He’s made my life and our kids’ lives pretty miserable and I finally decided we needed a change for everyone’s sanity. I still enjoy reading a great love story!
Oh I’m so sorry – I didn’t realize and I should have! Silly me!
Haha, how could you know? I haven’t disclosed it on my blog yet. I’m not sure how to without hurting some feelings since I know my husband reads my posts once in a while. It’s a little awkward but I’ll have to come out clean at some point. And honestly, don’t feel sorry for me. This is the BEST thing I could have done for me and my kids at this point.
It’s awkward isn’t it but good on you! I felt very weird about disclosing stuff with my 0.1% post but have no regrets. You go girl!
Haha, I won’t drag his family into my post because he’s a victim of them as much as I am, but it sure would feel good!
I know what you mean!