New MC trial stay

French

During my lunch break, we went to the MC and he stayed. We unpacked his suitcase and he went with the others to have lunch. We recognized a man we met. He was also eoad and as we have a common friend, she connected us, but we just met them once. Everything went very well when I left. 

And strangely, the headache I had since yesterday afternoon left almost immediately.

14 days of respite, with a lot of work. I will spend most of my time out for my work (conference, phD defenses…), but I will feel free.

M1

I hope this trial goes as well as Tunisia French, but I hope there will be distinguishing points on which to make a decision between the two!!

Emily 123

I'm glad to hear this French.  You have worked hard to get both of you to this point, where you can make a choice.  Have a good 14 days!

David J

French, 

Enjoy the respite, even though you will be working. I understand completely the inability to concentrate on work while caring for and worrying about your LO. I hope that this stay at the MCF works out for you and your partner. I think you said that this MCF is more expensive than the one in Tunisia, but would be much more convenient for you. I found that having my wife in MCF only a 10 minute drive away has been very convenient. I just took two winter coats and a pile of sweaters to her yesterday, and I have been checking her reactions to med changes. Doing these things long distance would be very difficult. Bon chance!

French

Hi everybody 

I had news today. Everything is ok. Yesterday he helped to peel vegetables for the soup. This morning he was smiling after a good night. He told to the coordinating caregiver that he was fine there.So I can relax.

We will see how it continues. This MC is less expensive than Tunisia (one third less) but he can afford for both of them, so it isn’t a criteria.

It is at about 20 minutes from home, it could seem better.  but as I still work, I wonder what is better : one hour visit every week, or 2-3 days every 2 months. His family comes very rarely, so I won’t consider them.

If he stays here I will still have to manage everything : medical appointments, new clothes’ shampoo … what is not easy while still working. In Tunisia they manage everything.  When I will see him, it will only be for holidays and good time together.

In Tunisia he can go immediately. Here we have to wait for a permanent place (for the moment he is in the room dedicated to respite stays), and the waiting is between 4 and 9 months.

Today I discussed with the neuropsychologist who follows both of us. The decline has been huge this year, she confirmed it (MMSE=12 in January, 6 in October). Adult daycare is no more possible and at home it is too difficult for me. So I need a solution for January (hoping I will be able to manage December).

My plan is still to go in Tunisia at the end of the year, and when I will be called because there is a place here, i will have to decide (ask him if possible) if he comes back or not.

And yes, I will try to enjoy this respite. This morning I had an alarm clock failure after a very good night and now I enjoy a small glass of wine with my diner

Michael Ellenbogen

I am interested in knowing how you were able to tryout all of these places. That sounds very interesting that one can try out different ones and be able to make a choice. How were you ablet to make this happen?

French

 Hi Mickael,

As respite stays are possible in some MC, I selected 3 of them ans scheduled 3 respite stays this year. Some would think that my partner hasn’t declined enough to be in a MC. But as I am still working, I need respite. he has been declining very fast this year. So I was in the good timing. Moreover my idea is that I want to be sure to choose the best for him. And I really want to take his opinion into account. 

The first respite stay was difficult for him because with anosognosia he thinks everything is fine and he couldn’t understand why he was there. I think he has progressed and now he is used with this disease (see other Alzheimer’s) and reassured when a caregiver is always with him, even if he still considers he goes to the MC to take care of old people. 

So yes, it is possible. But the main lever is that as I am young and with children at home, I know I will have to place him quite early. I also consider that there are good MC, in which people can be as well as at home, and perhaps better when the in-home caregiving begin to fail. In Tunisia as well as where he is now there are many activities and he can still enjoy them. 

Why should I wait the moment when I will be completely overwhelmed to place him ? At this point we will have very hard time and our home will be hell for both of us. 

It has required a lot of energy, to search and find the best solutions for a young Alzheimer. Now, I know that I have at least one he is ok with. And he even asks to go there. I feel better and Saturday he told to friends that he was very happy, even more happy because he will go and live in Tunisia. I still don’t know how long he will live there, but today I know I have a plan B if he wants to come back in France. Every good solution for him is good for me. I can be happy if he is.

Michael Ellenbogen

For those who know are we allowed to do that in the US and how would one go about doing that without being committed to one place to sign a contract?

Cynbar

Michael, I think this plan is quite possible in the States as well. Most if not all facilities in my area will do respites. They have a minimum stay of at least 2 weeks, and it is only private pay (actually Medicaid won't pay for memory care here in Massachusetts anyway.) I arranged one for my DH while I was recovering from hip surgery. It went very well, and a number of places were eager to have our business. Families can usually schedule short try-out stays, and then decide which one they like best. It can be a lot of upheaval for some patients to adjust to multiple places, however, so that could be a factor. We have seen posts here where relatives have arranged a respite for their LO with the expectation that if it went well , the LO would just stay and convert to long term --- but there is an out if it's not going well. 

French, I am glad he is adjusting to the current place, and that you are clarifying your plan. It is encouraging to all of us who have been following your story!

Michael Ellenbogen

Would you folks be okay if I shared this with some very high-level people in the world.  I would also appreciate any other thoughts that can make something like this more smoothly. While I could be wrong, I am not sure many people are aware that one can easily do this and I think this is a great way to help others. Thanks

Cynbar

Michael, of course you can share any info that I have contributed here. I think it would probably help a lot of people to know that they can do a trial run at a memory care or nursing home, they don't necessarily have to sign their LO in long term. I found it easy to arrange. I called several local facilities to see if they would do a respite ---- response was positive, they were willing to commit about a month in advance. I then toured a couple and picked one. There was some paperwork for the PCP to complete, and a TB test was required. That was it. I gave them a check, packed clothes for DH and dropped him off at the chosen time/date. He accepted it easily because he understood it was short term. Of course, availability of respite options may well vary in different places, but I don't recall any posts here by relatives who could not arrange a desired respite. Our respite had a specific purpose, to allow me to recover from surgery, but I could have set up another respite or two just as a trial if I wanted to.

David J

Before I placed my wife for a respite stay, I checked out several MCFs. It was always in my mind that she would need permanent placement at dome point, so I was looking at these facilities for both situations. Every place had different requirements for respite stay duration, if they offered respite at all. One facility had only 14 beds, and did not offer respite. Another had a 60 day minimum. The one I chose was the one that offered a two week minimum and was my choice for long term also. As it turned out, I converted to permanent residency at the end of the respite. I will also add that all contracts were one month renewable leases, with a 60 day notice (either side) to terminate. This makes any placement decision revocable if things don’t work out.