I have just gotten off the phone with Anthony for the third time in the last half hour. He is terrified and this is happening more and more often at around the same time of night. Tonight he thinks several people are trying to tie him up, that his house is being rummaged and wrecked, and that I am part of a conspiracy to hurt him. Ming and I have both talked to him and I have also rung the nurse in charge to tell her how distressed he is and that he is confused. She said they had tried to put him to bed (sometimes it takes two or three people) but he fought them all off. I told her he didn’t know what was going on and that we were seeing the doctor tomorrow to get emergency medication for this kind of hallucinatory agitation.
Our farm is a half hour drive away and I feel like I should sell up and buy a unit near the nursing lodge so I can be closer for these night terrors because for him to be this frightened is unbearable for all of us. I know/hope that in the short time it has taken to write this post, he will most probably be in bed and nearly asleep because in the end Ming and I managed to calm him down a bit – very hard to do over the phone.
The prolonged emotional agony of this disease, for all three of us, is like treading water in a strange and unfamiliarly large pool of murky water, and can change within the space of an hour. Earlier, when I rang Ants, he was fine and lucid and gorgeous. His words don’t come out very well any more so I was shocked by tonight’s frantic eloquence and his absolute terror. My feelings of helplessness are like jagged jigsaw pieces accidentally placed in the wrong box – futilely useless.
I love him so much.
jmgoyder 
There are no words Jules…I feel your heartbreak, have born witness to these night terrors and moments when lucidity is trumped by irrational fears and thoughts. My heart is with you all.
Thanks Mimi – can’t stop crying tonight – pathetic! I should be used to this.
I don’t think one ever gets used to this my friend..
I am so sorry for the pain of all of this. He obviously knows who to call for comfort and support. I hope that helps in some small measure, he must surely feel your love. You are not pathetic at all. If anything, your love is so strong it is incredible, not pathetic. I hurt for you all in reading this.
Seeing doctor tomorrow to get some meds for when this happens. I should have done this earlier but it wasn’t happening so often before – argh! Thanks for your lovely comment.
It feels a bit odd to “like” this post: while I am moved by your eloquence in the midst of such pain and suffering, “like” seems superficial and frivolous. But if it’s the support this forum offers, then I am offering it. On the reality side of it, I hope the doctor can prescribe the right medication to buy you all some peace. And after all the previous treatments, you should not feel bad for hesitating to pile on more! You are a brave, beautiful and strong person, and should never doubt you are doing the right thing when treading such murky territory beyond anyone’s imagination.
The love you have for your beloved Anthony is awe inspiring and I am humbled, knowing I am the mother of such a one as you. Please allow this comment, my precious daughter. Mother.
My heart with you too dear Julie, I hope and wish doctor give some good medicine for this. Not easy moments for you all. Love, nia
I’m so sorry to hear this, I can’t imagine what you are going through. Just thinking about a loved one who is afraid or feels alone or helpless makes me feel sick to my stomach. HUGS to you and Ming!
Just remember that Anthony knows that he has you and will always have you to soothe and comfort him. I can feel the absolute love that you have for him and I know that it sustains him in his darkness. I am sure that you will get him the medication to get him through his newest challenge. You are a beautiful, incredible rock of strength.
I can’t know what you’re feeling… the intensity… but I do remember feeling so helpless as my mother slipped away into her own world … and it was so hard… Hoping that Anthony’s doctor can do something when he gets these visions or thoughts that scare him so…. Diane
Jules, it tears my guts to read of what you all are going through, knowing there is nothing we can do to help. I so wish that were not the case. Just know, you are NEVER alone, truly. You are so much in my thoughts, and my heart. Feel it if it helps. xoxo
How can anyone get used to seeing/feeling the fear and pain in a loved one? They can’t. You cry as much as you need to Jules. This is very painful for all of you and it’s okay to cry. I’m pray for wisdom for you in your decision concerning moving closer to Ants. Maybe the doctor will be able to offer some medicine to stop the scary hallucinations? I hope so. (((Love and hugs)))
This must be hard… but what would Ant feel about you selling up… it might be harder on him..??
I hope the Doctor can give him something for the problem that will calm him and his nerves… I don’t know what else to say, not knowing what you’re going through… but this is something you will be able to help others with in the future…
Oh dear, I feel your pain and frustration. I knew about “Sundowners’ but didn’t know how severe it could get. How awful for you all. I hope this is a passing issue and passes quickly. I send you kind thoughts and best wishes. ((hugs)))
that has to be so hard when it is your husband. It is called Sundowner, and many PD patients have this. When there is a full moon or the moon rises early in the sky PD patients get sundowners. They become aggressive, physical, and very confused. There are medications, and you will also see he is not like that each day and usually not during the day hours. I have worked with that for so many years I am very familiar with it. My heart goes out to you and my own bleeds for Al
The emotional lability is devastating. Take care of you however you can to balance all the stress. Try not to sell or make any big changes in your life because of the very nature of how everything does change. You’re loved. You’ve an amazing heart. There’s nothing easy about any of this and this on top of all the recent stress in your life. I went through this with my own mother. My heart is with you. Sending love and good thoughts to you. Love, Paulette
I feel odd ‘liking’ this post too, but you know what we mean when we press that button. We want you to know we have read your words and are thinking of you at this most difficult time.
I can only imagine what Anthony’s state of mind is doing to your heartstrings. I hope that there is some medication to ease his terror and suffering. In one way I’m glad you’re not with him to see this as it is happening, but also sad that you can’t be there 24/7 to be with him to console him.
It must be getting increasingly difficult for you and Ming to watch this deterioration.
I’ve never been a great lover of prescription drugs, but this is the time when they are mandatory.
i’m so sorry for you all, i went through this with my mother and it is all so up and down. as this horrible disease progresses, sometimes becoming angry, sad or paranoid is a normal course of action. they can add a small bit of medication if they/you feel it will help to ease his anxiety and fears. this must be very hard.
My heart breaks for all of you. It must be so incredibly difficult to hear/see him that way. I hope the medication quickly takes care of this for him. Big hugs.
Sundowners is a real problem with dementia. Oh my friend how my heart breaks for you. Much love T
I feel your pain because I have been through it. Words fail me because I was never ever able to find a solution. Just keep loving and caring. That is all you can do.
so hard Julie xx
Julie, You love for Ants so thru in so so much of what you write, your willingness to sacrifice for him is beyond comprehension, To be loved in such a manner is god sent. You, Ants, Ming are all special people with a bond that is so so strong. Thank you for sharing both the ups and downs Please take care my friend. — Bill
Jules you say one of the most important things of all, that you recognize the wreckage of this disease on your entire family.
Your tears are the way your heart and soul process to heal.
I wish I could offer some magic words of comfort but know there are none.
This must be so hard for you and for Ming, it must be terrible for Ming to hear his father like that,you are such an amazing and strong woman.
I’m so sorry Julie. It must be so difficult to go through this.