My journey in Tunisia

French

Where to begin…

The first day was fine. He was captivated by me could do nothing, happy 

The second day, he was closed, didn’t want to have breakfast. We went to the psychiatrist. I found her professional and I was satisfied. We day was a little complicated but we did things together: lunch, swimming pool, go for a walk, diner.

The second night I was awaken by lot of noise in the hotel (I was in the sesame aisle but 3 floors above him):  drumming, cries, loud paces…. Twice in the night.

The morning he was again closed and  I learnt that he was responsible of the noise. He had turned over another resident’s bed. I can’t understand why he was in another room. We went to the neurologist. She never  called into question the diagnosis, had contact with the psychiatrist to adjust medical treatment. Everything would have been fine if she hadn’t done something she shouldn’t have don, obviously : she said in front of him that he has a late stage Alzheimer. Immediately he became very agitated and sobbed a lot. He sobbed many hour and the more he saw me more he sobbed. He told to the others « she is going to leave me ».

The rest of the day was very agitated, but I could distract him with dance. This night joe broke one door.

The next day, I left. When I call him, he tells me he is bad.

You imagine my mood. I just hope that the new medical treatment will help.

Ed1937

French, I'm so sorry. I would expect professionals, like neurologists, to know better than to say something like that. She should have known better.

Buggsroo

Oh French,

I am really sorry. It sounds like the progression is rapid. It is in my husband as well. I hope his new meds will help keep him calm.

Crushed

In 2012 the new neurologist saw Mild  cognitive impairment as the diagnosis and changed it to Alzheimer's.  He thought it was just an error in the records.   At Kaiser we gt the visit summary When DW saw the notation she broke down for the only time  it was not that it was a surprise it was simply so final.  needless to say we got Kaiser to change neurologists.   And suggested a little bit of counseling for HIM

Joydean

French I am so sorry. Truly hope the new meds will help. Sometimes we just have to wonder what ever crosses some medical professional’s minds! There are a lot of great doctors, but it only takes one to hurt patient and their family. Hope things get better for your dh!

French

Since Friday he now tells everybody that I have somebody else in my life and will quit him. I don’t know how this could enter in his brain. I just hope that his family won’t believe him.

When I call him he cries and it takes me a long time to have him more quiet.

Jo C.

French, I am so very deeply sorry.  How very troubling and stressful this must be.  It is a terrible situation and my heart breaks for the both of you.  His quality of life sounds to be so terribly compromised.  Are you still planning to have him brought back to France?   I ask because you had mentioned that as a plan and it may be a good one.

In dementia, the person's mind begins to go backward in time and recall far earlier days in their life and is part of their absolute reality; the present time is no longer a valid place for them. If he is going backward in time in his mind, it is not in Tunisia with staff of another culture.  I wonder if that is part of the problem.  It may or may not be.

It may be, that if he is relocated back to France, he may internally feel the change and also feel that he is nearer to you and the culture more familiar to him as well as staff possibly being better trained to manage such seriously complex care needs over the 24 hour continuum.

You have been working hard to ensure that his care is decent; it is a shame that the doctor stated in front of your Partner that he has, End Stage Alzheimer's Disease . . . how sad for him as he is ill equipped to deal with such a statement regarding himself.  Sometimes, I have found some physicians are clinically able to diagnose and prescribe, but are terrible at communications and dealing with a patient's feelings - some seem to have a deficit in compassion and understanding.  I so hope he does not remember that diagnosis which caused him such terrible distress.

You made arrangments for your beloved partner in a setting that is very like a resort.  The kind, heartfelt thought was that he would have a long time to enjoy such a setting and all its activity.  However; the reality is that he quickly became far too ill to be able to function with all of that on a consistent basis and he is not being served well.  The staff may be doing the best they know how, but that may be part of the problem.  They are staffed and have a process in place to deal with those who can enjoy the resort style setting, but perhaps are not set up well for a complex behavior challenge on a 24 hour a day, seven day a week need.

One concern besides his care, would be; what would happen in Tunisia if he should seriously injure a staff member or worse . . . what would their government legal approach be . . . that may be concerning.

It is, of course, up to you whether he will return to the familiarity of France.  Whether that may make a difference or not would only be known after the return. At least he would be within a much easier placement for you to access.  You will know best what will suit best.

Getting him home may be a few hours challenge; but he could be sedated to get him there, or if there are adequate funds, an air ambulance could transport him directly to France.

Thank you for letting us know how you are and how things are going; we often think of you and I was, in fact, looking for your name each day to see how things were going with your visit.

Let us know how you are, you are part of this large extended family and we care.

J.

Joe C.

French, Sorry your visit had so many challenges. Hopefully when you get back to visit again thing will be better.

JoseyWales

French - I'm so sorry it's so hard for him now. Our partners continue to seem to be following a similar path. Mine is now in a psych hospital, getting his meds adjusted because of some outbursts at his memory care. I'm actually happy for this, because they can hopefully take care of his agitation and crying at the same time. The meds he was on were never adjusted correctly, just enough to get him by and placed. 

I forget - do you have a plan to bring him back to be near you? 

French

Dear all, thank you for your kind replies.

One week later, the situation is a little improved. He now doesn’t cry when I call him and he is less violent. The meds seems to be efficient. He complains about not seeing his family and particularly me.

I am waiting for the doctor evaluation to prepare application to MCF here, but I feel less stressed. 

There has been a new incident this week. During the night he went outside his room completely naked. The nurse complained about an inappropriate behavior but videos didn’t show anything. The caregiver told me that the following morning she found his pyjama with poop and it was certainly the reason why he put his clothes off. 

His declines continues. 

His son will visit him in one week. Fist time in 5 months.

Jo C.

Thank you very much for letting us know how things are going; you are doing a wonderful job under difficult circumstances, I hope your plans will soon become reality and all goes smoothly in the transition.

J.