French

Jo C.

Hello French; I am thinking of you and so hoping that your trip to Tunisia went well.  

J.

French

Thank you Joe.

My travel went well. 

One of our friends was there before. We have organized several excursions with a driver. This friend, my partner and his caregiver went to visit several cities on Monday and Wednesday. Everything went very well. On Friday they picked me up at the airport and we went to visit the ancient baths of Carthage (beautiful, it reminded me of my Latin classes about the destruction of Carthage). We also went to the old city. I will try to post some pictures.

On Saturday, we did a long walk on the beach, 12 km, and came back with a shepherd. On Sunday we went to eat in a typical restaurant, taking the bus with the Tunisians.

Every evening I had an aperitif and dinner with the spouse of a resident (my spy) and other visiting relatives. It was comforting and nice to establish such relationships with other families.

The whole time I was there, my partner was fine and slept well all night. He felt asleep at 8:00 pm. normal after such active days ! I told the caregiver I don’t want him to makes naps in the day, but walk and do sport si that he will sleep in the night and will feel better. Not sure they will do it. 

I found that he continued to decline. He is having more and more trouble expressing himself and using his cutlery. I also find that his steps are less steady too. He has gained 10 pounds, but with his hiatal hernia, he will be on a diet now. This is a good thing because he still has a stomach ache when he sits too long. When we walked a lot, it didn't hurt.

We took down all the pictures of his kids and me and the albums because it makes him sad. His mother's letters are no longer given to him.  

I got explanations about his so-called violence. In fact, when he goes out in the corridor at night, he gets lost and calls "hey oh" and the night shift catches him screaming. He gets scared and runs away...they run and scream more. You can imagine what happens next. The main problem is the lack of training of the Night Shift.

I came home Monday at noon and yesterday (Tuesday) I was called because he broke his caregiver's noses A head butt. He wouldn't have done it on purpose, he was coming out of the bathroom. But yesterday evening I was desperate thinking he will be classified as violent.

I am now thinking about preparing his return for next winter if I get a place here.

French

French

With the shepherd

French

In the old city of Sidi Bou Said

French

Me and the 2 caregivers at the restaurant

M1

Wonderful pictures French.  Glad it was a good visit but so sorry that he's having troubles.

Buggsroo

French,

Your pictures remind me of Morocco. Good memories. I hope your partner’s problems will be sorted, it sounds as if there are problems that need solving. Good luck.

Lynne D

Lovely, French. Thanks for sharing.

Jo C.

Hello French; it is lovely to hear that you had a good trip with things going well while you were there.  You did a thoughtful job of re-doing his room to make it more comfortable for your partner in his present state.  I am also sorry to hear about the unfortunate incident with the caregiver's nose.  That must have felt very disappointing.   Maybe it was simply an accident and that they do not begin to classify him as violent.

The photographs are lovely.  How wonderful for you to have shared some good time with him.  He was probably so very content to see you.

It is also wise that you are making a "Plan B," what to do IF you would have to move him back to France.  It is always very wise to have such a possible plan for, "just in case."  All of us caregivers here talk about our "Plan B," which we have in our back pockets so we do not have to make hard decisions without knowledge if things abruptly need to be changed. 

It seems you mentioned working toward a PhD?  If so, in what field are you working toward?

Keep us posted and may the days ahead be smoother and give you peace. 

Joydean

French, thank you so much for sharing your photos! They are great. So glad you and your partner were able to share some fun time together. Sorry about the accident with the caregiver. Take care and thank you again. 

abc123

Dear French, you are both in my thoughts and prayers. You are an inspiration to so many of us.

Ed1937

French, I hope everything works out well for your LO. But it's always good to have a "Plan B" in case it's needed.

Love the pics! Thanks.

French

Joe, I defended my phD in 1999.

 I can’t imagine how I will manage this plus all what I have to do with children and a PWD. Now, I am a research director and supervisor of phD students.

 I have a lot of responsibilities with my students, a team to manage and research project. I had to slow down a little. I was thinking that now I will be able to work as before, but I was too optimistic. I am still not fully intellectually available 

Jo C.

Hello again, Ms. French; it is nice to know more about you.   I can understand how deeply difficult this must be for you.  That is a tremendous amount of responsibility you have with the needs and demands all placed upon you. 

How old are the children?  And being curious, what field are you in?  That is a lot of education; I congratulate you.   I got a far as obtaining a second Master's Degree and never went farther - four children and two parents with dementia as well as a mother-in-law (MIL) and grandmother-in-law (GMIL) who also had dementia.

My step-father had Alzheimer's Disease, but my mother had a behavioral variant of FrontoTemporal Dementia which was like Alzheimer's on steroids with the behaviors that began to surface.

I did have a thought and do not know if it has any value or not.

You have a bit of concern lest your partner be labeled as "violent."  From the photos, your partner appears to be a tall, strong man; would the facility he is in ask him to leave if they feel he has violent behaviors?    You did have a good point in that the night care aides may not be adequately educated to manage the behaviors he has happening, even when he is acting out from being frightened and feeling lost.

Since your partner's condition is evolving so fast, would it be easier to have him closer in France rather than where he is now?  I ask this as you mention possibly having him brought back to France in the winter.

 A concern crossed my mind; if the idea is that he may be better served in France considering his advancing condition and care needs; it may be far best to bring him back while he is still able to fly on a normal flight. If his behaviors advance or he is unable to tolerate a plane trip later on, you may not be able to get him back to France.  That is why I wonder if moving him sooner rather than later might be in your and his own best interests.  As I said, it is just a thought that popped up into my mind; you will know best.

May this soon begin to work its way out for the best situation for the both of you.  Please continue to let us know how you are, we will be thinking of you and we truly do care.

J.

  

Cherjer

French, I presume you are the one standing with the two caregivers. Loved the picture and you are too young to be dealing with AD. A lovely picture(s). You have so much going on...my husband is 79 and even though it is tough managing his AD, those who are dealing with EO have it much worse especially with children still at home. You are truly amazing.

ButterflyWings

Beautiful pictures and I hope you enjoyed some of your time in Tunisia, it sounds as if you did except for the challenging stuff. Broken nose, ouch. I can certainly imagine you feel like part of your brain is still fully occupied with caregiving duties, as indeed you are on call though not nearly as fully as before when your partner was still at home. But you still are the point person.

It seems like the adjustment period is unfolding pretty well overall, right? Just not completely free of a few rough spots. I laughed when you mentioned your "spy". It must be a relief to have someone local that can give you perspective. And yes, it seems like the night staff isn't helping the situation...needs better training. Is there something like a care manager available who you could hire to help manage your partner's situation for a few months or forever? Whether your LO remains in Tunisia or returns to a placement in France, it seems like it would be helpful and worth the cost (if charged a reasonable fee) to have a different contact person in place (reporting to you) who is professional, reliable, and can be the first line of contact for the facility so you do not have to manage every single decision as you currently are. 

Like identifying learning goals or research objectives, you have been so clear and strategic I just know it will work out for you ultimately. Your main goal is to help transition him to a stable situation that frees you up to reclaim your life and career, plus the relationship with your son(s) right? Hoping that you do not remain "on call" as you are now, whatever placement decisions you ultimately settle on. You really are a heroine here, for detaching with love and investing significant time and energy to research and test options for+with your partner, to prioritize yourself as well as the PWD.

French

Yesterday the caregiver called me several times because she was scared. I think it was uncalled for and it bothers me while I'm working.

I found a solution: I gave her the phone number of my partner's sons : "Call them, message them until they call back saying that their father wants to talk to them". It seems to work! He'll be happy and I'll be less bothered.

Why didn't I think of this before? We are so used to manage everything alone.

 They don't call ? They will be called !

M1

French I'm just musing here, but I'm wondering if the unwarranted calls are a "side effect" perhaps of the caregivers now viewing you as a friend since they've gotten to know you.  Female politics, perhaps.  Surely they realize there's not much that you can do from long distance, are they expecting you to "talk him down"?  What you came up with sounds like a good solution to me!  I would also think you're completely within your rights to tell them some time limits on when they can reach you when you're working, or that there are certain hours when you cannot respond unless it's a life-threatening emergency.  Push comes to shove, perhaps you could go to their management (but I know you don't want to stir up trouble for them, that could cause other issues too).

Gig Harbor

He may need to have male caregivers if continues to be afraid. They would be able to hold him back until he calms down. Unfortunately breaking someone’s nose would make the other caregivers afraid. This disease is so frustrating because things don’t stay the same due to the deteriorating brain.

French

Yes GH it was also my idea as here he had 2 over 4 male caregivers. I was answered that in Tunisia only women were caregivers. But I am thinking about finding a coach to do hiking once or twice a week. I imagine that the young caregivers can't go on long walks alone with him, but with a man they could probably.

As he continued to be very agitated, Xanax is now given twice a day (after lunch and diner). It was necessary because all the caregivers were too scared. 

Agitation was beginning before going to Tunisia. I took a CD player and all his records with me last week, but the caregiver didn't seem to use it. Yesterday I told her to put on music as soon as he wakes up and every time they are in the room. Today she told me it was working fine. He his singing and forgets what troubles him.