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Am I a caregiver or a doormat?

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Posted 12/28/2011 4:23 PM (GMT 0)
Connie - I do not yet know when they plan on coming down. My mom and I were talking about this earlier today. On one hand it makes sense for them to come down and attend the caregiver meetings. However, it doesn't make sense for them to stick around for however long it takes for the donor liver to come available. They live in Wisconsin and we are in Central Florida so it doesn't make sense to go back and forth. We were thinking that my mom and I will organize everything extremely well so that we can share all of the info with my grandparents when they do come down. My mom is thinking we'll call them when the liver becomes available and they can come down then. She'll be in the hospital for a few days (or more) so that will give them time to get down here.

Do you think it's a bad idea to wait till the 'last minute' to call my grandparents?

I was thinking that maybe we all divy up the caregiver responsibilities. My grandparents can do the household stuff like cook, clean, laundry, grocery shop, and administer medication. I can get all of the formal stuff done lke paperwork, pre-transplant appointments, assisiting with the financial arrangements (not giving her money, just figuring everything out with donations, insurance, etc...), and I can back up my grandparents whenever they need more help. I also think it makes sense for me to manage the medications for a while (organize in pill boxes and then give to my grandparents telling them when to give the specific meds to her). For my brother, he can driver her back and forth to her appointments.

You think this is a good solution?
Posted 12/28/2011 4:34 PM (GMT 0)
Wow. This a really positive post. I can't believe MELD 20 and working. Mike would'nt have been able to find his job site. Coudn't drive anymore as he would get lost and had terrible judgement behind the wheel! Excellent news. The regime they have her one seem to be working for the time being while she is evaluated.

Best, Carol
Posted 12/28/2011 4:36 PM (GMT 0)
Yeah we are all surprised at how well she seems to be. Per her lab results when she was in the hospital during Thanksgiving, her MELD was a 26. Based on her labs from last week she was down to a 20. Not sure if it will keep going down or not. I guess we just have to wait and see.
Posted 12/28/2011 4:38 PM (GMT 0)
Mike was 24 when he got to transplant center for evaluation. With the meds, diet, longer off the booze, he dropped to 17 for several months. He was a 22 when they transplanted him in May. I think your mother may have purchased some time for all the testing, etc. Maybe getting on the good diet helped as much as Mike quitting the cocktails!
Posted 12/28/2011 4:39 PM (GMT 0)
She is lucky too that she really has no other underlying conditions. No hepatitis, no diabetes, no cancer, nothing really. I think she can really do well once she gets the transplant. =)
Posted 12/28/2011 4:44 PM (GMT 0)
Remind me how old she is? And her folks. She is blessed to have a daughter who cares this much. Mike's daughter is 36, lives 1000 miles away and came to FL every time he was hospitalized and for the transplant...seh actually drove him as I was out of town on a "girls weekend" and she was giving me some respite. I was primary, but got through it all becasue she was my right hand man! She is coming for his anniversary May 1.

She has 3 kids, works full time, and really really made some sacrifices to be with us for this past year so much.

Carol
Posted 12/28/2011 5:22 PM (GMT 0)
She will be 62 in March. Her parents I believe are in their 80's but I'm not totally sure. I think between them and me we can work it all out.
Posted 12/28/2011 6:20 PM (GMT 0)
Looking at the title of this post and the changes in your posts, I sort of see this situation evolving.

I see you as the Project Manager of the project: Get MOM back on her feet. 

I am hoping you can keep your job, keep up with your own family, and make sure she has what she needs all lined up without the need for your full time participation.

I think the notion that you find a counselor for yourself is perfect. I did the same. It really helped.  Every time I headed down the "poor me," and the "I am really angry" paths she reminded me that I owned my anger and none of the folks in my space were MAKING me angry. They were each on their on voyage. I was making myself angry.  And no one gets taken advantage of who doesn't sign up for that job!

Yup.  I like the Project Manager role for you.

Best,

Carol

Posted 12/28/2011 9:14 PM (GMT 0)
I agree, ML!

Sara, it all depends on what the center in Orlando (Florida Hospital?) requires. At Mayo, both the primary and secondary caregivers had to attend the Caregiver's Class (educational meeting), but I think that happened sooner than it would have otherwise (early on in the evaluation process) because Caregiver #1 told me he couldn't do it when we were due to see the SW. He really did look more like a patient than I did, having been very, very ill and he's still recovering, though much better. Then when Caregiver #2 had to leave to go on a long-planned and pre-paid trip....and got sick on the trip...my sister had to suddenly come from out of state to become Caregiver #1 and I had no backup at all. This is why I said to have several people in place. What happens if one of your g'parents has an emergency medical situation or even an accident? I doubt either of them would be able to come to FL then. So would you be able to drop everything and become the primary caregiver? If not, think of a backup--and I don't mean your brother.

If your mom's center DOESN'T require the secondary caregivers to attend classes during evaluation, or see the SW now, then what I would do is make yourself the Primary Caregiver and your g'parents Secondary. They usually have those classes on certain days of the week, as they are attended by a number of people at once--with all kinds of transplants, not just liver. At least that's how it's done at Mayo.When your mom has her transplant, they will be contacted.

They contacted my primary and secondary caregivers when I went into surgery, although I'd already called them when I was on the transplant floor awaiting the surgery. So if you give yourself as Primary and your g'parents as Secondary, you will both be contacted, although you will likely already be there. That is when they can start their journey down to FL. However, they should have bags packed as much as possible, keep car gassed up, etc., as they won't have much notice. When it happens, it happens fast.

Regarding the meds, the discharge instructions should include a flow sheet with all the meds she will be taking and their dosages. I was told to go by that and not what is on the bottle. That is because dosages and number of times taking meds can change. For example, I was discharged on 4 mg of Prograf twice a day. They gave me three different bottles with different strengths: 1 mg, .05 mg, and 5 mg. When I got down to 2.5 mg twice a day, I had to take a 1 mg cap and a .05 mg one. I never have used the 5 mg caps. Likewise with Prednisone. While I only have one strength, 5 mg, I'm on a taper and at one point was on 7.5 mg, so I'd take one 5 mg tab and then cut another one in half and take one of the halves to equal 7.5. My next taper will take me down to 2.5 mg, so I'll just be taking half a tab. It can be tricky and definitely needs someone paying attention.

Other than that, I think your plan is a good one!

Hugs,
Connie
Posted 12/28/2011 9:29 PM (GMT 0)
Sara, Mayo and Miami, both in FL have very different protocols.

Mayo said her caregiver HAD to be at hospital, HAD to go to class, etc ect.

At Jackson/Miami, we had no book (until later), no class, no HAD TO DOs.

There was a pile of junk they gave for us to read...which I did and informed myself. No quiz.

In the hospital, when I stayed with him 15 or 16 hours a day, I learned what they said along the way. A social worker came along twice. Once to have us watch a 20 minute film about meds, and another time to give us a month worth of meds, a speed talk summary of the movie and a workbook that would be good material for a class if they had such a thing.

The man in the next bed had no one there. They taught the meds to him. He took a cab home. His teen aged sons came in the evening but didn't watch the movie. They got him a home health aid for a while when he went home. And a visiting nurse.

Again, I read the book, but was not required to read the book. They were much less organized, or formal, than Mayo. I think I might have liked it to be organized.

The meds were the hard part for us. Mike was confused for a long time.

I was confused for a while.

We only put the pills out one day at a time.

There were pills to be given before, with, and after foods.

Twice a day, three times a day, three times a week.

We got a plastic tackle box and used 14 boxes for all the times.

Gradually we went to a AM, Noon, PM, Bedtime box but that was when we were used to what was before,with and after meals.

It's a lot. I hope Granny and Granddad are sharp! Or can follow an organized plan.

As project Manager, you seem like the type who will make a plan they can stick to!!!!!

I also got a little program for my iphone called pill O'clock that sent off an alarm when each pill was due. That was a help the first few weeks and then annyoing cause we caught on.

Good luck with all this.

Carol
Posted 12/28/2011 9:42 PM (GMT 0)
That's a big difference between centers, Carol! I think Mayo is the strictest, with the most thorough evaluation process, of any other ones I've heard about. In some ways it was a pain, but I knew it was all for my benefit. The most aggravating thing to me was having to test my glucose before I took a bite of anything. I'd start to eat a snack and my sister would remind me to check my glucose first. The meds are all taken the same every day--twice a day, plus noon and bedtime--so using the pill box wasn't a problem. My original caregiver was given a 3-ring binder with all kinds of info in it, including the flow sheets with the meds at the time I was in the hospital. She passed it on to my sister, but in short time it became mine. I haven't even read all the info, as I'm too busy doing. But I use it every day as my flow sheets are in there.

Hugs,
Connie
Posted 12/28/2011 10:52 PM (GMT 0)
Ok I just got back from the education class and the social worker appointment. A few things have changed today.

First, my grandparents are no longer coming. They told me mom they cannot come down but did not say why.


Second, after meeting with the social worker I think between my brother and I we can handle it. I, like you guys mentioned, will project manage. I will attend all of the caregiver classes, sort out the meds and paperwork, get the tacklebox for the pills, and once the transplant happens I will be at her house, but I'll be moreso supervising than anything. I still have to work, which I can do from my laptop, so I'll just work from her house. That way I can still make sure there are no changes in her condition, I can make sure she gets the right meds at the right times, and I can make sure that my brother is keeping things sanitary. My brother will be responsible for shuttling her around to her post-transplant appointments which will be on Mondays and Thursdays. I will not stay the night with her but I'll work from her house for at least 3 weeks, and I'll go to work during the days she is down at her clinic appointments.
My mom and I have agreed that we are going to put my brother through a pre-transplant trial run. She said she is going to enforce to him how serious this is and that it is critical that the sanitary environment starts now so that she does not jeopardize her transplant by getting sick prior to transplant. I do not know if it will work or not. However, I told her we need to draw a clear line that he cannot cross and if he does she will need to make some demands or else. She seems to understand that his unsanitary behavior (lack of showers, hacking and couching, spilling food, garbage laying around) can in fact make her sick. Once they said she had to wear a surgical mask in her own home for 3 weeks it seemed to make a light go off in her head.

All in all a positive day. We met a lady there who had a MELD of 21 (my mom is a 20) and the lady just looked sick and exhausted. I am really very thankful that my mom seems to be doing this well with a MELD of 20. I'm hoping it is a sign that we will have a positive transplant experience. =)

Post Edited (sara3394) : 12/28/2011 3:58:38 PM (GMT-7)

Posted 12/28/2011 10:58 PM (GMT 0)
This is a great progress report Sara! Good luck with all this. Carol
Posted 12/28/2011 10:59 PM (GMT 0)
Thanks Carol. I am feeling better about things already. =)
Posted 12/28/2011 11:03 PM (GMT 0)
Sara-you sound so together with everything. In charge and confident. That is great. Your mom will certainly appreciate and benefit from that too. Maybe, just maybe...your brother will get his act together as a result of all this. I am sorry that your grandparents aren't coming. Since it is unknown when your mom would receive a transplant, maybe at that time they might be able to. Keep staying strong and in charge.

Emma
Posted 12/29/2011 12:16 AM (GMT 0)
i feel bad for my mom that her parents are not coming. i can tell she feels hurt by it. especially because my grandmother didn't say why she couldn't come....just that she couldn't. but we will get thru it. i am really hoping that maybe this is happening because it will change both my mom and my brothers lives. kind of the two birds with one stone optimistic outlook =)

hope everyone else is doing well and feeling well today.
Posted 12/29/2011 3:00 AM (GMT 0)
Sara, it's good that you have a plan. I'm sorry her parents decided against coming down. It sounds as though they had second thoughts about getting involved in such a serious surgery and recovery. It is a huge responsibility. Perhaps at their age, they just started feeling it was too much. Of course, I'm just guessing. And, as Emma said, perhaps they can come down for a bit after transplant.

As I said, stuff happens and plans change, often without any notice. But you seem very adaptable. I do agree that your brother should start to change his ways now, as this is something that might take awhile.

I was never told to wear a mask inside my own place. In fact, they instructed me to wear it only when I am in the midst of strangers...a group of people whom I have no way of knowing if they are sick or not. I wear a mask to lab and when in the midst of a group of people elsewhere. Otherwise, I just keep my distance from others and try to avoid anyone who is sneezing, coughing, or otherwise acutely ill. Oh! And also do a lot of handwashing and use the alcohol gel when needed.

You are right about your mom doing well if she gets a transplant. It makes a huge difference that she is otherwise healthy. Even though I have hep C and had liver cancer, I don't have heart problems, diabetes, etc., and my liver never decompensated. This made me an excellent liver transplant candidate.

Hang in there and keep us posted.

Hugs,
Connie
Posted 12/29/2011 3:28 AM (GMT 0)
Connie - The doctor mentioned the term 'decompensated'. Does this just mean that it has ceased to function normally and there is no hope of regenerating? He did say that my mothers liver has decompensated.

So, if you cannot already tell I'm a bit over-analytical and tend to get ahead of myself =).....that said.....I put together a medication tracking sheet for my moms post-transplant meds. Would any of you mind looking at it for me? I tried to make it super easy to read just incase I am not there to give her the meds, and also for when she has to manage it all on her own. I tried to make it 'for dummies'. I'm just looking for someone with actual post-transplant experience with taking or adminstering the meds to help me make this an easy to use tool which will hopefully alleviate some confusion for us down the road.

If any of you are interested in looking at it, please email me at [email protected] and I will reply back with the excel spreadsheet.

THANKS!!!!!!!
Posted 12/29/2011 4:42 AM (GMT 0)
"The doctor mentioned the term 'decompensated'. Does this just mean that it has ceased to function normally and there is no hope of regenerating?"

Yes. Although I had cirrhosis and liver cancer, the liver was still functioning (though not very well.) It was riddled with disease and because of the unknown useless hepatic artery, it could have decompensated at any time. Because it didn't, I never had encephalopathy and never turned yellow. Even though your mom is decompensated, the fact that she has no other real medical problems is still a big plus for her.

Sara, they probably already have medication charts to fill in. My first ones had all the meds and dosages filled in and I just had to write in when I took them. Since then, I've made some of my own, but using their format. I'd be glad to look at your form, but I don't have Excel. Maybe someone else can help you out.

I'm analytical myself and a bit compulsive. I've had to rein myself in at times and try not to obsess over every little thing.

Hugs,
Connie
Posted 12/29/2011 5:03 AM (GMT 0)
Sara, I sent you a email ....my husband is post transplant. ..I would check out your spread sheet and maybe give you some advise
Posted 12/29/2011 5:08 AM (GMT 0)
Connie I'm like you ..a tad compulsive ....I almost made myself crazy. Charting al,'s inr ..creatine and bili before transplant ....and obsessing over every lab ...I got so use to speaking for al I find myself not letting him ..now to doc and nurse ....its been a adjustment for me ....lol
Posted 12/29/2011 2:45 PM (GMT 0)
you guys are awesome. thanks so much.
Posted 12/29/2011 3:00 PM (GMT 0)
Elle, learning to relax and let go is not easy for us compulsive types. wink

Hugs,
Connie
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