Social support people during transplant

[cariad]

I am returning to all of you for more opinions and advice. I need someone with more social grace than I have to handle this. I hope this makes sense - my head is spinning.

We do not have a transplant date set, but all going to plan, my husband and I should get a date for him to donate a kidney to me as part of a clinical trial in September. We know it will be a Thursday. We were told that my husband will be discharged the day after surgery, a Friday, but will be unable to lift anything or drive for 2 weeks. He can work from home, the kids have full-time (7am-6pm) preschool/school during the week. That first weekend will be an issue. I will be discharged supposedly on the Saturday (2 days after transplant) but will have to stay in a hotel by the hospital for 2 weeks to go to the transplant center daily as part of the trial.

OK, now to my issues. My husband's brother was planning on flying in from England to stay with the kids for a few days during the initial post-transplant time. He agreed to this before we even had a ballpark date to aim for. Then my husband emailed him to say that it would be in September, and he wrote back saying fine, except not the last week in September because his wife was going on a trip and he would need to be home with his kids. His kids are teenagers, and incidentally my husband's other brother lives just 3 hours away in Cardiff, if the first brother really wanted to find a solution to this. (We do not ask the other brother because he is quite an emotional person, and I feel that would be a disaster for our kids. He also has some health issues of his own.)

So, my husband and I are both angry at the brother who was going to come out here. For me (I can't speak for my husband) it is more the insignifigance of the reason - his wife's trip that could surely be rescheduled or canceled - than the fact that he is saying there are times he cannot do this. We have rearranged trips and plans for much smaller reasons than this. If he had said he could not get away from work, THAT I can understand, but this seems to be deliberately broadcasting the message that we are not important enough to inconvenience them a little bit for this once-in-a-lifetime scenario.

So, my husband and I decided to offer to pay someone down at the school to stay with the kids for that initial weekend. We decided to go to our favorite teachers for recommendations first. My husband mentioned this to my older son's teacher, and she immediately said "Give me a list of what you need to have done, I'm coming over for the weekend and bringing my daughter who has started showing an interest in babysitting. We are going to have so much fun!"

I burst into tears when my husband told me this. I am overwhelmed that she would make this offer. I can't even begin to express how grateful I am. I would like to pay her, but don't know if that would be tacky or appreciated. How does one handle situations like this? Just saying thank you and over and over does not seem sufficient.

And then there's the brother. My husband is going to call him and tell him we have found someone else. However, I really think he should address the fact that his brother is constantly treating him this way. It is not like we ever see him, so when he does behave like this, it is after we have spent a fortune and taken one of my husband's few holiday opportunities to fly out to see them. Neither brother has flown out to see us in America since we were married 9 years ago. My husband is the type to just let things fester but never confront anyone. I don't want this to ruin their relationship, but what the hell? Even my husband is ticked off, and he underreacts to everything! Anyone have any good ways to approach this topic without turning this into more stress for my husband, who frankly cannot handle much more?

As always, thanks! 

[okarol]

I am glad you found a solution to the child care problem. It sounds like a great situation. You could say "Since your daughter is interested in learning about babysitting, we want to encourage her by paying for her time."  If you don't feel you can pay the teacher and her daughter, you certainly could get them a nice gift certificate to a restaurant, or a gift card for music or books, or whatever interests them.
As far as the brother is concerned, I am afraid you might just want to let that go. He DID offer, which is more than most people do, and he was willing to come, all the way from England! When a living donor surgery is scheduled it is often up to the donor to pick the date (that's how ours was scheduled anyway.) I am sure he really has no clue what you two are facing. Families seem to fail miserably or come through admirably in these types of things. It might be hard to do, but I don't think you should focus on it or confront the brother. You and hubby should spend the time planning something fun to do after the transplant, and not dwell on the brothers misstep.
I am excited for your upcoming transplant and hope all goes well!

[Wallyz]

I hear your irritation and pain, but I think Okarol is right. You embrace the community that supports you, and let those who put you off away, and remember not to trust them next time.

Much love and prayers for your transplant.

[paris]

Well said Okarol.  The brother did offer.  If my brother offered, and my sister in law had a trip planned, she would have a fit if things didn't go her way.  I think your solution is a really good one. It is wonderful to have friends who are so willing to help.  Thinking good thoughts for a great transplant 

[Chris]

Cariad, if it is RIC that they have you set up with, but hopefully not anymore. Don't expect something nice. It was a big talk about in the waiting room for people who had to stay there post tx. They wanted me to stay, but luckily didn't live to far away.

There are hotels real close to the hospital, so hopefully conditions improved. Another thought is I hope someone can help you get to the transplant clinic from the hotel if the need arises where you feel weak, but not needing 911.

[cariad]

Wow, thank you for these insights.

OKarol, you are probably right that my brother-in-law does not understand how this works. I presented this idea to my husband, and suggested that he (Gwyn, my husband) just tell his brother that we have found someone else, and see where the conversation takes them. Knowing Gwyn and his brother, his brother will sense immediately that something is up and want to know what is going on. But maybe his brother just won't want to deal with it. I think Gwyn will let it go if his brother does not press for an explanation.

I hear your irritation and pain

Thank you, Wallyz! That is always nice to hear.

If my brother offered, and my sister in law had a trip planned, she would have a fit if things didn't go her way.

I am sorry to hear this, Paris. I think in our case, my sister-in-law is probably the less likely of the pair to act childish about a change in plans, but I just don't know. Oddly, when we were contemplating moving back to Britain earlier this year, Gwyn's brother offered - completely unsolicited - to come over for a few weeks to help us pack up. We had no idea when the move would take place at the point when he made that offer. So, he seemed like an ideal choice to ask for this favor instead, but of course, now we are realizing that it won't work out.

Chris, it *is* the RIC. Should I be terrified? I have stayed at others, so I know not to expect luxury, but I am concerned about germs, obviously. I thought it would be walking distance to the clinic? My husband wanted to talk about getting someone to help me. I absolutely hate people seeing me sick, though. I am convinced that so long as I do not have to look after my children, I can handle anything else on my own (which would be my preference). We may hire a nurse for each of us - Gwyn at home and me at the hotel. I think our insurance covers some of that, but will have to check. Thanks for the thoughts. I will research hotels right away.

 

[Chris]

Chris, it *is* the RIC. Should I be terrified? I have stayed at others, so I know not to expect luxury, but I am concerned about germs, obviously. I thought it would be walking distance to the clinic? My husband wanted to talk about getting someone to help me. I absolutely hate people seeing me sick, though. I am convinced that so long as I do not have to look after my children, I can handle anything else on my own (which would be my preference). We may hire a nurse for each of us - Gwyn at home and me at the hotel. I think our insurance covers some of that, but will have to check. Thanks for the thoughts. I will research hotels right away.

 

At the time, back in 2000 thru 2001 people complained about it being dirty, things not working, and a couple complained about holes in walls. Not sure how big those holes were though. Things hopefully changed and someone is a better manager. It is in walking distance though. As far as a home health care nurse, I'm sure your insurance will pay for one. I had one post transplant that came to my home for health check up, blood draws, infusion of meds, so that is something they will discuss before being discharged, but bring it up anyway as a concern since some of that will be done at clinic anyway Can't remember the names of the hotels nearby the hospital though. I'll try to see the names of them when I go there on the 23.

[jbeany]

My mantra the last couple of years has been a repeated "I can not change my family.  I can not change my family."

It is extremely frustrating that family so often doesn't get the seriousness of kidney failure.  I realize that they see us on our good days - feeling fine, and laughing, and they assume we're not really that sick because they don't see the bad times. 

I like the idea of paying the daughter, and a lovely gift certificate for the mom.  I'm sure you can offer to pay the mom, but I doubt she'll take it.  Just be grateful the wingless angels around you, and focus on getting everyone healthy!

[cariad]

My mantra the last couple of years has been a repeated "I can not change my family.  I can not change my family."

Jbeany, I love this and plan to borrow it frequently!

Hey Chris, I looked up the Residence Inn on TripAdvisor. It looks like it was rebuilt in 2008 and the majority of people rave about it now. The complaints were things like 'no view' or 'staff did not know enough about local sites' - things I could not give a toss about. Since as far as I can remember, it was either free or very discounted through the hospital, I will take my chances. I would still prefer to be at home, but we live too far. If I think of it, the next time I'm in Chicago I will drop by and visit, maybe ask to see a room just to be sure.

We should know more about dates on Tuesday. The donor coordinator was even saying possibly August for the big day. That is awfully soon....

      

[Chris]

August in one sense would be good healthwise, but planning wise it screws things up doesn't it.
As far as view in hotels, you need to be fairly high up to have any kind of view due to the proximity of other buildings. When I had my transplant, I had the view of the Ferris Wheel at Navy Pier that lites up at night, but it's a sort of given not to have a view in downtown unless your way up and buildings are smaller.

Well if you like Chocoalte, the Hershey store is near the hospital if you have the strength.