Respite stay to his brother and friend : feedback

French

In august, my partner spent 10 days to his brother and then 10 days to his friend (she is his princess… his fiend when he was a child). It isn’t the first time. The brother, whose wife is a nurse, already welcomed him one week last year and one week in February. His friend welcomed him one week in 2019 and also last October.

To his brother, his sister in law managed everything (shower, clothes…) and they managed together the day.

To his friend, she managed the shower, clothes and had help from her father, her husband, her daughter and SIL for everything in the day.

Their conclusion : you can’t continue this while working and having child at home. He needs a constant supervision. yes I know and it is good to have others sayings it.

The friend’s father is the best friend of my partner's father. He called him to tell him how it has been and that he should be ashamed not trying to help with his other children. He is right. In may, the father came to have holidays to the seaside with my partner’s sister. The were at 50 km and didn’t propose to welcome him. They completely ignored him. They try to persuade themselves that everything is ok and even never ask for news.

I feel grateful  for their help but at a greater level for their understanding. I am not sure they will change something for the others who don’t care (or I am sure they won’t), but at least they will support and defend me in my decision to stop by the end of the year.

I am on the way. Next week, we have an appointment with a doctor from the court to assess his capacity to decide and manage. I have organized the trials in 2 MC. But as I am quite perfectionist, it will take time to do everything as well as I want them. I count days and I am not sure I will be able to continue till the good solution.

For me the 20 days respite wasn’t very beneficial. I had only 15 days not working. I was unable to plan something and stayed home. I spent a lot of time to organise the next respite stays. And I was dreading his return and my return to activity. For m, the problem with respite stay is that it has a end. 

David J

Ah, French.  It is all consuming and respite doesn't always provide the relief we want. I have learned that I am all alone, despite the people who care and love me and my wife. We need to do what id best for our LO and for us. I am at the point of committing my wife to an MCF, and I understand you to be at the same point. As much as we want to be all and everything gor our LO, it just isn’t possible. It is sad, and painful, and feels like failure but it’s not. Do what you need to do for you.

abc123

Dear French, It is good that the others now know what you are dealing with 24 hours a day. I  am happy that you have their understanding. I think of you often and I hope things will go smoothly when the day comes. You have all of us here behind you! We care about you.

LadyTexan

French - 

I am glad the others that spent time with your partner, recognized and told you what you already know. Caring for your partner is TOO MUCH for one person. Especially considering your other responsibilities of a career and a child at home.

Kudos to the friend's father for informing your partner's father what you are dealing with.

You have already gone above and beyond what can be expected of you. There is a saying here that perfect is the enemy of done. I understand you want everything to your liking. Sometimes, good enough is good enough. 

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JoseyWales

I'm glad you got a respite, and I'm glad that others are seeing what you're seeing. Sometimes I feel like DH does so much better for others and then everyone thinks I'm crazy for having such a hard time.

I'm right with you with placement. I thought I could wait until December. I can't. Heck, at first I thought I could wait until next May. But this is so hard. I considered respite, but I don't think I could go back to what I'm doing after a break from it, I'm embarrassed to say.

French

Josey, I perfectly understand you. Your husband seems a little more advanced than mine and doesn’t  let you sleep. I have my 7 hours sleeping almost every  night. And when it isn’t the case it isn’t his fault but just that I am very anxious.

You are right about respites. It is very difficult to resume after. The last days of respite I begin to have stomach cramps, to sleep less… 

But the problem is that my partner is very young (52 ) and it isn’t easy to find a place for him. Here, MC receive directly subsidies from the government for each resident and we pay the extra cost (about 2000€ per month). But the government doesn’t pay for people under 60… just because MC are for old people and above 60 you are consider as disabled. In this case you directly receive the subsidies to pay home caregivers or special medical homes (for Mentally handicapped). It can’t be dedicated to MC. So in MC we won’t receive any subsidies but also the MC won’t receive any. So they prefer old people and it can easily be understood. I found one that would accept, but they want a trial first (for everybody). The trial has been scheduled in November and then we will have to wait for a place. 

If Tunisia makes it, it will be the waiting solution, as long holidays.

I have another solution, the shared homes. it is a shared home, with 8 residents. The residents  pay a rent for their room and share the other costs. So they are the employers of caregivers. In this case, I can dedicate the subsidies we have to pay the employees. So, from a financial point of view, it is ok. But it is 1 hour from here, in small villages. No nurse or doctors, you have to have your own ones and ask them to come (like at home). No possible trial as you have to come with your furniture. And for the moment there is not place in the nearest ones. it is the reason why I want to try the other solutions first.

 yes, this fall will be very hard even with the respite stay. I would like to plan all this quicker but I can’t. I still hope that after the second trial we will have chance. Perhaps they will have a place quickly.  In this case I will accept it. I don’t like to navigate in such a fog, but I have to.

For the moment I have my 13 hours caregiver per week, 3 days at the daycare (10 am - 4:30 pm). I will add as many caregivers as needed to hold on until the best place.

I envy you who  have the solution in one month. As you, I may seems heartless. But we are young and now we have to chose between them or us. I can't see the point of sacrificing ourselves more than we already did it. 

JoseyWales

French - I hadn't realized before that over 60 rule. That makes everything for you so much harder. I'm so sorry.

I'm somewhat luckier for placement because of where I live in the US. There are no years long waits for a medicaid bed in my area. Some of the homes I called were full at the moment, others weren't. Some don't take medicaid for memory care, others do. I'm also pretty fortunate that most of the homes nearby are ok. Some better than others, but none seem to be the horror shows I often hear of in bigger cities. I also won't have to do any private pay for a year until we can apply for Medicaid. They'll help me with that as soon as he moves in.  That just goes to show that advice on this board can often be regional - don't take anything that people say here as the absolute truth.

I've decided on one that's about 30 minutes from my home, which is about as close as I can get because of where I live. It's in a small town, but has a fairly good reputation. I can't get in because of Covid right now. I could continue to look for places - there are many an hour away. But then I know it would be that much harder to visit, so I'm thinking that my presence in MC with DH outweighs the slightly better home?

I don't have to keep him at this home if I don't want to - I can switch homes later if I need to. It's not perfect, but I honestly think it will be better than here at home with a caregiver who is completely worn out. 

I like the idea of a home with 8 residents and caregivers hired to help. I so much like the idea of a house better than our facilities that are more like hospitals.