News after 3 weeks in the hospital

French

Yes, the repatriation was already 3 weeks ago…

- week 1: tied to the bed, a lot of agitation. He grabs us and hurts us, doesn't eat, spits up... he can't speak.

- week 2: still tied to the bed. Slightly less agitated. I start to succeed in making him eat and he has little quiet moments and makes little sentences. I asked him who he wanted to see. For his father, his mother and his sister he always answered no. His brothers, his children, me and his ex, yes.

- end of week 2, his mother comes to the hospital. I warned the staff that he didn't want to see her, but the nurses probably didn't believe me, they even told me that he was no longer in a state to say what he wanted or not! And the hospital is like a mill' at visiting hours, you can come in as you like.

The father and sister also come in together. 

- Last Monday, when I came to visit, just after the father and sister, I found my partner's face all scratched up and he had pulled out a lot of hair. He was even more agitated than when he arrived after the repatriation. He was so distressed that no contact was possible with him anymore, he was too violent. 

The staff saw the link with the visits, but too late. I am very angry. How could these people impose themselves on their son, brother, who, tied to the bed and without any possibility of being understood, had to try to tell them that he did not want to see them? Even if I explain, I am w sure they wouldn’t believe me, they always thought I was forbidding to see their son. They wanted to see him, they saw him but will never admit how they hurt him.

I also learn that the family has started to intervene with the doctors to manage the continuation. 

Friday noon, I left my job to go to the hospital. I spent the afternoon calming him down. The father arrived. When he wanted to go into the room, I said no because my partner was sleeping. He went in anyway and said I wouldn't stop him from seeing his son. That woke him up. The father at the foot of the bed, the son was stamping his feet and saying "no", but the father didn't understand and kept blaming me. I asked him to be quiet, to get out of his son's line of sight and I calmed him down. I calmed my partner down and said to my father-in-law: do you see what you are doing? He told me he was going down the hall to get his daughter. I stopped him: ask your son if he wants to see her. Asked twice, got the same answer twice : no. He didn't insist and left. I should have done this before, but I can’t spend my days at the hospital. It is tiring. I still have to work and my children at home,

Now I have given the POA to the hospital and the doctors have forbidden all visits except for me and the two sons.

In the last few years, I have grumbled a lot here after his two sons, but for the last 3 weeks, I am very happy with how things are going. They get it, they are here. We take turns going to the hospital, so there is a visit every day and after our visit we put a message in our WhatsApp group to inform the other about what’s new. I'm glad I never gave up and always made an effort to keep in touch. It's important for me that they are there now, I'm not alone anymore.

On the medical side, the doctors question the neuroleptic malignant syndrome because he had no fever. For them, there was just a significant increase in agitation. They told me it was a frontal form of Alzheimer's (different from FTD), very difficult to treat because of the behavioral problems. The problem is that the hospitals are full. There is no room in neurology, nor in psychiatry, he is too young for geriatrics. So he is still in internal medicine and the doctors have no experience in Alzheimer disease. Last week he was just on antidepressants and a little sedative, this week back on quietapine... it's very long waiting for improvement, but they want to progress slowly to be sure each choice of treatment is good.

We don't know when he can be discharged. We have a place in the MCF that he didn't like...not the one he liked. But all the doctors assure me that this MCF is the most advanced in managing difficult cases and now my partner is unfortunately very difficult.

Thank you for eating me. I am still following you and happy to see that for most of you, the placement was a success, sad when I learn that one left us.

M1

French what a terrible ordeal, I'm so sorry but I'm glad he is back with you and in France. Im glad to hear from you. Do keep us posted as you can, i hope they can get him stabilized. Maybe good that he didn't have neuroleptic malignant syndrome after all.

Battlebuddy

   Such a sad story of agitation. Poor guy. He tried to make his desires known but only you would listen. I’m glad that you seem to arrive at some sort of understanding of what will keep him calmer but it does seem like he needs more drug support? I hope they find just the right cocktail for him. 

    It’s strange how during this journey we look back on the stage we have just come through as “ the good old days.”I was picturing your husband at the beach in Tunisia with the wonderful caregivers. 

    I’m so sorry that he has passed into a more aggressive stage. I hope and pray it doesn’t last long and he finds some peace 

Ed1937

French, I'm so sorry things have turned out the way they did. It's good that you and his brothers came to an understanding. It's always good to have others share in what you are feeling. 

Hopefully it won't be too long until they can come up with a medication regiment that will work for him. You have your hands full, and you have other responsibilities. Please keep us updated.

toolbeltexpert

French I am so proud of how hard you have work for your partner. Your love has won the day. I continue my prayers for you and may there be better days ahead for you both!

Joe C.

French, I am sorry to here how difficult things have become but you are an amazing advocate for your husband. I hope there is some improvement so the he may leave the hospital and hopefully settle in the MC.

Jo C.

Dear French, there are not words sufficient to say how very sorry I am for all that is happening to you and your partner.

He is blessed you are such a good advocate for him, though I feel sure it must be exhausting.  It is a positive outcome that his sons are being of support; I am sure it is appreciated.

I so hope the physicians soon find the reasons for the severity of  the behaviors and are able to treat appropriately to enable them to give relief to his suffering.

When you have time, please let us know how you and he are doing; we will certainly be thinking of you.

J.
 

Joydean

French, so sorry things have gotten so hard, but you have stood strong for your partner and fought so many battles for him. Glad his brothers are there for him too. Praying that they will find the best care for him.  Take care of yourself too!