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Am I a caregiver or a doormat?

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Posted 12/26/2011 1:36 AM (GMT 0)
I'm trying to sort things out in my head and would love any advice, positive or negative to help me get through all of these thoughts.

As you all know, last week the hepatologist confirmed my mom needs a liver transplant.

Here are my issues....

- My brother is worthless. He lives with her. He is a slob. He is unemployed. He is germy, dirty, and disgusting. I am not being mean....I am telling the truth. In this case the truth sucks. He is going to contaminate my mothers sterile environment post-transplant. The kids and I and their dad stopped by my moms today for Christmas and the place was a disaster. My brother had apparently eaten, or attempted to eat, a peanut butter and jelly sandwich in the living room. Literally, there was jelly smeared in huge clumps in three piles on the floor. He had jelly on the back of his pants. When we got there he was on the back porch slumped over with a burning cigarette in his mouth. He has burn holes in his shorts from where the cigarettes fall out of his mouth while he is asleep, sitting up in the chair. The house was so yucky that we left after 30 minutes. We purposely took the kids outside to feed the ducks so that we didn't have to be in there. All of this said....there is no way he can be her caregiver, and there is also no way she can live with this guy in her house post-transplant.

- Second issue is money. She is waiting on the forms from the hospital for the charitable donations. She is going to ask her church to contribute. I am sure she will get enough money this way. However, when we first found out about everything I spoke before thinking. I have $3,000 in savings but it is student loan money that I need to return. So of course I mentioned I had it and we could use it if we need to. So now she wants the money to go into her account as a just-in-case stash. My problem with this is due to three things...........1) I am not 100% sure that I can be her caregiver yet. 2) If my brother continues to live with her post-transplant I do not see her healing well in the unsanitary environment. This is really a horrible thing to say, but why would I give her $3,000 that I have to repay myself if she is going to put herself into a filthy and unhealthy situation post-transplant? Isn't that pointless? I know it's a horrible thing to say but it is what I'm thinking and would like input whether positive or negative. The thrid point is that I don't know if the charitable donations made to her can be sent back to me to repay the $3,000 she needs me to give her.

- My third big issue is that I am not sure I can be her caregiver even though I know that I am the right person to do it. This is for a few reasons......first, we have never gotten along and I think we would really irritate each other and piss each other off. Second, I cannot handle my brother being there and if I make her choose between me as a caregiver or him living there, she will not choose me. Third, the logistics of being her caregiver is something I'm not sure I can physically work out. If I take FMLA I do not get paid and I cannot afford to not receive income. I can work from anywhere via my laptop and I am lucky in that I work for an incredible company and have an incredible boss who understands what's going on. So I might be able to be her caregiver but I still have to work while I do this. Then there is finding someone to take care of my kids while I take care of my mom. I don't know how long I can sustain a lifestyle like this. I work full time, I am the main child care provider, and I do school online full time in the evenings.

I have been seeing my therapist more frequently lately since my mom went into the hospital over Thanksgiving as I just knew the transplant was coming. My mother and I have had major issues for a long time and often argue and then not speak for a week or two. She, in my eyes, treats me poorly and I guess I just ignore it as best I can seeing as that my dad is dead and she and my brother are the only family I have. As an example, when my father was ill everyone told him to go sign up for VA benefits. After 10 years he still had not done it. So one day I loaded him up, took him to the VA office and got him signed up. I took him to all of his initial docotrs consult appointments and helped him get everything set up. (note that I helped take care of my father for along time - taking him to doctors, taking him to the hospital, being with him at the hospitals, etc...) After that they began receiving full VA benefits. My dad died 5 years ago and my mother continues to receive VA death benefits. Well, about a year and half ago the VA filed a claim on my moms behalf because my dads exposure to agent orange in Vietnam was worse than they originally thought. about 6 months ago my mom received the claim check for that. She did not tell me. It kind of accidentally slipped out. The VA cut her a check for $60,000. She paid my brothers lawyer to get his license back. She bought him a bed. She spent over $1,000 fixing his teeth. She did all kinds of stuff for him. I somehow convinced her that she needed to purchase a home and pay it off which is now proving to be the smartest decision she ever made in her life. I found her a gorgeous, totally renovated condo for $45k. She now lives there for the low price of $200 a month due to HOA fees. She went from paying $1,000 a month to $200 a month thanks to me. So how did she repay me for a) getting her and my dad the VA benefits leading to her monthly checks of over $1300, b) getting her and my dad the VA benefits leading to her receiving $60,000 and paying off a new home.................she repaid me by buying me 2 dozen eggs to dye with my kids for easter, but she only did it because she needed the egg cartons. She gave me the eggs in a bowl. Oh,  but she did tell me she loved me, because I guess that was the biggest gift I could receive. =(

Maybe I'm angry. Maybe I'm bitter. I'm definitely confused. Why do I have to go so far out of my way to turn my life upside down for someone who has never done it for me?

Oh and MERRY CHIRSTMAS! smilewinkgrin

Sara

Posted 12/26/2011 2:18 AM (GMT 0)
Sara, first of all: Where do you live and is it you alone with the kids? Is there any way that she could stay with you while she needs a caregiver?

As I said in a previous post, I would not even consider your brother as a caregiver--ever. And I've just got to ask...does he do drugs (even prescription ones) or drink? The burning of holes is a dead giveaway to that behavior.

Do NOT give your mom your $3,000....you know where it would go: To your deadbeat brother. If the hospital is really pushing her for money, then pay it...you to them. However, she has not even gone through transplant evaluation yet...so you are really getting ahead of yourself and so is she. Not everyone or every center has the short wait that I did for a liver, either. And they are not that easy to get.

However, she needs to make a decision about work. She will not be able to work while undergoing evaluation and transplant and probably for several months (at least!) afterwards. What she really needs to do is to quit the job (when transplant evaluation starts) and apply for SSI/SSD. If she is not working, she can apply for Food Stamps for herself only. She would probably get maximum benefits.

You are responsible and reliable and do everything necessary plus more...that's why people expect it of you and you expect it of yourself. Practice saying "No." Firmly. It's a simple word.

As far as your feelings towards your mom, trust me when I say I understand. I ended up writing off my own mother 20+ years before she died. She was an alcoholic and a mean one...and had a "wet brain" for over 20 yrs. before she died. She was irrational and delusional, never seriously sought help, and hurt me more times than I can count. No regrets on my part for "disowning" her, though some people will never understand how I could do this. It helps that I was only with her for 6 yrs. and was mostly raised by my g'mother and aunt.

I don't think you are at that point in your relationship with your mom. If you don't attempt to be her caregiver (in whatever fashion you can work out or is comfortable for you), you may feel a lot of guilt and regret. However, if there is absolutely nobody else, you are going to have to let something go, at least for a couple of weeks. Can the kids stay with their dad? Can he afford someone to look after them?

Does she have any church friends who might be able to help out some? The caregiver issue was a huge one for me and the very thing that could have caused me to not get transplanted. But it all worked out, and I hope your situation will, too.

Hugs,
Connie
Posted 12/26/2011 2:20 AM (GMT 0)
Helping your mother is what I would do, but don't give her your savings. She probably has money left from the $60,000, and if she's really down to zero, then you could pay her bills directly (if you wanted to). Your brothers messiness as you describe it, is unlikely to ruin a transplant, unless he actually gets a cold or the flu. I doubt he's going to be tending the incision anyway. Is your mother on a transplant list? If not, that could take a while. As far as you being a doormat; not yet, but you're primed to overcompensate, with a slacker brother. Help, but keep your distance. Good luck, you're going to need to stay strong.
Posted 12/26/2011 2:26 AM (GMT 0)
GMTA, David! smilewinkgrin However, Mayo stressed to me the importance of clean surroundings and lots of hand washing. Not a problem for me...just increasing my cleanliness a little more, which was already better than average. If it's as bad as Sara says, I wouldn't want to be in the same room with her brother. I think it's more than messiness.

Hugs,
Connie
Posted 12/26/2011 2:41 AM (GMT 0)
My kids live with me and so does their dad. Unfortunately he is not very understanding. I have contemplated asking him to pick up the financial slack while I take FMLA but I see that causing a huse argument. He just doesn't understand what it is like to lose a parent and have to think about losing another one. I thought about letting her stay with me, but how will that impact my kids? Will is be a memory that should not have to have? Should I expose them to that? Plus, with my three year old child isn't that running the risk of her contracting germs?

As for my brother, I know he cannot take care of her, but my mom does not see that. I mentioned today just kind of in passing that I may not be able to be the primary and she said oh I know your brother can help. uggghhh......how can she not see it? As for the drugs, I know he takes medication for anxiety. He seems like he is constantly doped up but he and my mom claim it is just because he has poor sleep habits and is tired. I refuse to believe this. This is how my dad was when he was doped up on oxycontin. I think he has major medical issues righ tnow too and that he needs a serious intervention. I just don't know how to do it. No 34 year old man should be like this. He will be dead by 45 at this rate.

As for the $3,000. I am going to tell her that she has to spend her $1,400 first and hopefully by then the donation money wil be in and be able to cover the rest of the costs. She has to pay the first $3,000 of her deductible before the VA insurance picks up the rest of the costs.

Also, she is on the transplant list now. She will start the pre-transplant workup process after January 1st. On average, the wait time for a liver at this hospital is less than 1 month. Incredible! I saw it on their website and the doctor confirmed it is accurate. That is why I am thinking ahead already. It may be here sooner than we expected.

I also talked to her about your (Connie) comments about unemployment not being the right choice. I reminded her to finish filing her disability claim. She will turn 62 in early March. I am sure she has not done anything with the claim since i last worked on it.

As for saying 'No'.....what can I even say No to? How can I say no I won't help you with this or that? By the way, this is exactly what I am working on with my therapist =)

She is going to ask her church friends to help. She will have to. I cannot do it all.

Thanks for listening.....I'm feeling stressed.
Posted 12/26/2011 3:02 AM (GMT 0)
there's no way you have the ability to be her caretaker... you have a responsibility to your husband and your children.... first... before your mother... yes... you can participate in her life... and this process but... you're going to school... working... raising a family... you have to have help doing this... you have a complicated relationship with your mom and your brother... yes help her... but focus on you and your family... yes you have been a door mat... and will continue to be if you continue to enable both her and your brother... step back and realize what you are saying that you would do... and giving her your student loan money ... well... you need that for school.... you can help your mom without putting your own family situation at risk... you are emeshed in your mother's life... need some distance.. so you can help her and yourself ... that's my take on it... Sandia
Posted 12/26/2011 3:14 AM (GMT 0)
sara, I feel for you. I went down medically myself trying to care take the impossible. Late and need to get to sleep now or would post more. But make room for you as you are what there is and you are who you are ultimately responsible for. Some good detailed suggestions from others. I know how hard this is. Rosemary
Posted 12/26/2011 4:26 AM (GMT 0)
Arneeb, I think that she has the ability to be her caregiver post transplant (we are not talking indefinitely here or even for a long period of time.) However, she WOULD need support and help. Too bad your hubby is not supportive, Sara.

It's absolutely true that you have to take care of yourself and your family, particularly the kids. You mentioned the 3-year-old: Yes, he would tend to have more germs and possibly carry a virus. However, if he's not in the midst of getting vaccinations, he should be okay if cleanliness precautions are taken. I came home with a bunch of masks to protect me from others, plus disposable gloves.

Tell your mom that if she will go ahead and apply for SSI/SSD, she will almost certainly get approved, not only because she needs a transplant, but also because of her age. Age plays a big part in their decision, as they don't feel they can retrain someone over 59 for something else. Tell her again that she will get the same amount in benefits as she would if she worked to full retirement age of 66. But she does need to give notice at her job first.

I have NEVER heard of a person being placed on a transplant list without first going through pre-transplant evaluation. I have heard of people who get placed on it prior to the full 6 mos. of AA or alcohol counseling, if they are showing commitment to sobriety by attendance and having a sponsor, etc. But never put on a list prior to evaluation. So make sure you have that straight.

Hugs,
Connie
Posted 12/26/2011 3:15 PM (GMT 0)
Where is the remainder of the $60,000? I have a feeling mom has stashed some money. The main thing to keep your mother from becoming infected, is for her to wash her hands and make sure her food is clean. Living with a slob will make that job harder, but not impossible. Remember that there are a myriad of ways to become contaminated through regular activity. Buying a newspaper and receiving change is one way. Money is handled by numerous people and can be a way to spread disease. Same goes for mail and opening doors, etc.. Your mother has to wash her hands after every transaction to attempt to stay clean. As long as your brother isn't coughing in her face, she could avoid most problems. I also have to believe that the transplant team will spot your brother as being an inappropriate caregiver, from the get go.l
Posted 12/26/2011 9:12 PM (GMT 0)
I also keep alcohol gel near the front door and carry a small size in my purse. The Lysol wipes are great for wiping door knobs, lightswitches, remote controls...anything that people touch regular. And yes, money is filthy. A good hand scrubbing (and I also use a nail brush) is in order after handling money.

Hugs,

Connie
Posted 12/27/2011 1:27 AM (GMT 0)
I'm no shrink but what your writing smacks of sibling rivalry to a degree . I myself have a couple brothers , Neither are as bad as yours but one of them could crap his pants in broad daylight within their eyesight and they would swear it was someone else . It's always been that way with us so I just go about my business and ignore it and throwing money or affection at her ain't gonna solve anything in that department . Your gonna set yourself up for a pretty ugly fall by loaning her money .

As far as I know anyone can pay a doctor bill , It doesn't have to be her . The hospital would be glad to take your money for her medical expenses . If you just feel like you need to give your mother something that would help her , Might I suggest you get a CNA to assist her after the surgery 3 days a week or so and you pay for it . This would keep your guilt level down , Keep your brother from getting any benefit in her care ( Might I also suggest the most hideous nurse you can find , preferably male or something very close ) , Your mom would get the help she needs also . I myself had two ladies while I was in the hospital who administered the laxative for my endoscopy that I would recommend highly for the CNA job . If all else fails and your brother runs off with the nurse you still win . smilewinkgrin

Look into making a buffer zone between your emotions , wallet and your family then you might make it through this unscathed .



A. Ziffle
Posted 12/27/2011 2:17 AM (GMT 0)
"As far as I know anyone can pay a doctor bill"

Or any bill, for that matter. No one or company cares who signs the check, as long as the bill is paid. I found that out when I was in the hospital for nearly 2 months.

Hugs,
Connie
Posted 12/27/2011 2:12 PM (GMT 0)
I think I have decided to not give her the money. I do not think she has any of the $60,000 left over. Also, the whole point in getting her into that house is so that she would have virtually no bills each month. According to her she has not saved a penny. I had showed her exactly how she could save her $60,000 back in 5 years but needless to say she has not even attempted it. Between my brothers $1,000 a month in unemployment, my mom's $1,000 a month in VA death benefits, and my moms actual paycheck they really should not need any money from me.

I have decided to start seeing my therapist every week so I can work through these issues. I need to separate myself from my mom and my brother without feeling guilty. I'm actually pretty angry with both my mom and my brother so I know it is not a good time to make any big decisions about either one of them. I am not going to say anything to her about the money until she asks. I think it is time for her dedciation to her church to be reciprocated. It's time for her to ask them for help.

As for her being on the transplant list or not....I didn't realize they had to complete the pre-tranplant workup before she goes on the list so I suppose she is not on it just yet. Her workup begine in January due to deductible issues.

Thanks again everyone.
Posted 12/27/2011 4:13 PM (GMT 0)
Hello Sara, I have been reading this thread not joining as the others have been giving you great advice.......I just paid some bills for my kids for Christmas without their knowledge...(Even with the privacy laws).....so it can be done quite easily should you decide to help your mother out.......I agree with the others.....I am glad that you have decided against giving her the money.........also glad that you are going to therapy. You have no reason to feel guilty but I totally understand why you do.

Take care.......thoughts and prayers........
Posted 12/27/2011 4:30 PM (GMT 0)
Sara , The actual testing doesn't take that long but it's very intensive . Every aspect of her health will be tested , Surviving transplant surgery as I am told takes alot out of you . Dr.s want each potential patient to be as healthy as possible to insure mortality . Living a healthy lifestyle mainly consisting of watching your diet and staying active helps dramatically . I myself have been through testing every year for 2 years now and it is no cake walk .

I sincerely hope the church steps in and lends a hand with her . If the other members see whats going on with your brother she may be subjected to the same views that you are having about this situation . Churches aren't God and far to often they fall prey to the fallible human opinion from the congregation , So don't count on the church to return as much as she has invested financially . Heart felt prayer or hands on assistance might be more along the lines typically of what to expect . Church isn't a financial institution , It's a faith institution ( Theoretically ) . Expect dividends to be paid in faith and anything else is a bonus .

Sounds like you have things pretty sorted out and a reasonable game plan so far . You have to remain level headed , Easy to say Eh ? You are the only person this situation seems to be bothering amongst the trio , Sometimes you gotta take a step back and let the Sh## hit the fan for the others to get on the page with you , And now seems to be that time .


A. Ziffle
Posted 12/27/2011 6:34 PM (GMT 0)
Ziffle, I don't think Sara meant that the church should help her mom out financially, but that she needs to ask for other help that she might need. For instance, I'm having quite a time getting rides to Mayo every week, but don't go to church (I believe in God, but don't care for organized religion.) So I'm depending on neighbors to help me. It is very hard for me to ask for help, but I've had to with transplant.

Sara, I'm very happy to hear that you are not going to give your mom the money. As you said, she should be fine financially for now. Seeing your therapist weekly should be a big help. If you don't take care of yourself, who will? Not your mom or brother.

Hugs,
Connie
Posted 12/27/2011 9:23 PM (GMT 0)
Sounds like some good thinking going on... get some mental separateness... then decide.. and yes... a therapist should help... ur starting to make headway... keep on comin back... Sandia
Posted 12/27/2011 11:14 PM (GMT 0)
ok so the first round of appointments has been scheduled. My mom has the 'educational' appointment at 1:30 tomorrow. Then she has to do some labs and then at 3:30 she meets with the social worker. I asked her if she wanted me to attend and she said it was up to me. I told her to call back and ask if they said that the caregiver should attend any of these appointments. Apparently that reminded her that yes the caregiver is supposed to be at the educational appointment.

We talked earlier in the day about my brother. Apparently the mess all over the floor was not a peanut butter and jelly sandwich like I thought, but a smoothie he dropped and apparently could not clean up on his own. Anyhow, we kept talking and I told her that she needs to begin getting him on track with the cleanliness and such right now, pre-transplant. Turns out she has spoken to her mother (my grandmother) and my grandmother and grandfather are going to come down and stay with her. They will be her primary caregivers. I think it is a good idea and a bad idea. It is a bad idea because they are old........very old. I'm not sure they can handle everything. However, I work about 10 minutes from my moms house so I can help out when they need extra help. My boss has already ok'd me taking off or doing whatever I need to do. He's a fantastic boss. So, the good point about my granparents coming down to stay with my mom post-transplant is that it will allow someone else to really see what's going on with my brother. My mom even mentioned that she thought about this. We are hoping that my brother will try to get his act together because my grandparents are going to live there for a few months. It is a small condo so they will all be on top of each other. I highly doubt my grandparents will tolerate my brothers filth. I think this is a good thing.

So, I am going to meet her at the educational appointment tomorrow. I told her she should probably take my brother so that he begins to understand what he needs to do to prepare, but it turns out she does not want to take him. She said we will jsut take a lot of notes to share with him. Interesting huh????
Posted 12/27/2011 11:30 PM (GMT 0)
Yeah Connie , I just wanted to clarify to be sure . I did attend a church at the time when I got sick but quickly realized the stereo typing of alcoholism follows you even there . It's off subject but I share your view on religion .

I was fortunate to have had family and a friend at the time that helped me out with rides , Reality has a way of weeding out people who " claim " to care and those who care with " ulterior " motives . Liver disease has opened my eyes to so many things , some good some bad . I suspect alot of folks in our position feel the same way .


A. Ziffle
Posted 12/27/2011 11:50 PM (GMT 0)
Sara, actually the meds and appts. are the most important things for a caregiver to handle. They will also want a caregiver to make sure that the patient weighs, takes BP, pulse, and temp first thing every morning. The patient should actually be taught to do these things and take over ASAP. One thing you can do for your mom is to get a large pill container--one that is good for a week's worth of pills. My best friend gave me one that has Morning, Noon, Evening, and Bedtime pill depts., which has been ideal. Post-transplant, your mom will have A LOT of pills to take and a container that can be set up once a week for the week ahead is the best thing. She will be discharged with discharge orders stating exactly what her meds are. At Mayo, I set up an acct. with a specialty pharmacy that has the antirejection meds and other required meds on hand, and they also deliver (actually they ship by UPS, so I get them the day after I order.) The transplant team will order a month's worth to be delivered to the hospital before she is discharged. I'm sure that different hospitals handle this differently, but the bottom line is that she will have a lot of meds. She will probably have a glucometer to check her blood glucose, even if she doesn't have to take insulin after discharge.

I know that the caregiver had to be at certain appts. In fact, both my primary and secondary had to attend the Caregiver Education class (they did it on different days.) I was not required to attend, but I did go to one of them. They had a transplant nurse, a social worker, a nutritionist, and a pharmacist all speak, addressing various aspects of post-transplant care. They gave handouts of the information. At Mayo, the primary caregiver was also required to go to the SW appt. and one other (transplant nurse?) I'm sure I wrote about this in my TP Evaluation thread.

I think that you should go to the SW one and educational one, at least. Think of yourself as a secondary caregiver or back-up....in case your g'parents are not able to handle the caregiver role or get sick or..... Things happen. My original primary caregiver was too ill to handle it. So my secondary then had to attend the required classes, appts. And since she could only devote a certain number of days to me post-transplant, I had to unexpectedly have my sister come from out of state to be my primary caregiver (she got a really quick rundown of everything, along with the first caregiver's written info, at the hospital the day before I was discharged.) Had she not been extremely bright, she could never have been able to figure it all out. And she did feel overwhelmed at first. The hardest part was figuring out the meds. She had never heard of the things I have to take. I had, but they were still new to me. Between the two of us, we had a brain and were able to grasp it and also calm each other down when we were about to "lose it." With Mayo's program, I had to write down every med I took and the time (am still doing this, as it helps me keep track of time between meds and to chart my vitals and track them.) When sis left, I was required to chart every bit of food and drink that went into my mouth for 4 days, as the TPC didn't think I was eating properly (I was.)

The hands-on care that is required immediately after discharge is to help the patient learn how to do these things herself. She will need to be showered at least the first time. A detachable shower head/hose comes in handy for this. I didn't have one and my sister got drenched trying to shower me. The next shower, I was able to do myself except for my back and lower legs/feet. After that, I could take one on my own but had sis close by in case I needed help. That was just once or twice and then I was fine. It helps that I have 2 slip proof grab bars and a shower chair, due to my artificial hips, to prevent falls.

They need to remember that the goal is for the patient to become self-sufficient with her care.

If your grandparents can get your brother to shape up, it will have been worth their involvement. Of course, when he leaves he may slip back into old behavior. And it doesn't really matter what food was smeared all over. It's gross and can harbor bacteria. In the hospital, I ate half a banana, wrapped the peel around what was left, with the intention of eating it a little later. A nurse swooped in and threw it in the garbage as she said it had been sitting out for 2 hours. They don't allow that. There are also rules about opened food in fridge (must be eaten within 3 days or tossed out.) I had to throw out a lot of food upon discharge. Of course, with so many people there, there may not be any leftover food.

To get further ideas of what to expect post-transplant, read my Transplant Blog. As I said, each center and patient are somewhat different, but you will get a general idea.

Do keep us posted on how the evaluation goes and whatever else transpires.

Hugs,
Connie
Posted 12/27/2011 11:55 PM (GMT 0)
Rick, just saw your post. ITA with your view. I've seen a lot of hypocrisy at church and among so-called "Christians." Not that everyone is that way. I look for people who "Walk the walk." One is the lady who has been taking me to my lab visits every Wed. AM, though it means her getting out of bed super-early. And she's 84. A remarkable lady. But she's the exception and I need to find at least one more I can count on, now that I know the weekly labs will continue into Feb., at least.

Hugs,
Connie
Posted 12/28/2011 2:25 AM (GMT 0)
Again, you guys are always so helpful.

Connie - Thank you for spending so much time with me. It realy helps me understand where I do and don't need to get involved. I think what I need to do is attend everything as I will be at least the secondary caregiver. With my grandparents not being down here yet it will be important for me to have verythorough notes and instructions for them. I had a feeling I was supposed to attend the social worker appointment too. I'll just plan on being with her for both appointments. Do you no what the social worker typically discusses?
Posted 12/28/2011 3:12 AM (GMT 0)
When do her parents plan on coming down? They may have to do so for part of the evaluation process. I think it would be a good idea for you to go to your mom's appts. with her if you possibly can. There's a lot to remember and she may not be able to share all the info with you. Same goes for post-transplant, but her parents can step in then. They may want to use a small tape recorder to record what is said. Most centers allow this. I just took notes and also kept a notebook of questions I wanted to ask at the next appt. or on the phone.

The SW asked me why I wanted a transplant. I told her I didn't, but that I'd been told I needed one and that I would like to live a little longer. The important thing was naming a primary and secondary caregiver. They later changed, but initially I did have to have those 2 on board and attending whatever was necessary. She gave me info about the possible drugs I would be on post-transplant and the pharmacies I could contact and choose from. She gave an estimate of $30 a month or less co-pay for my drugs, which fell short by about $20.

I believe we went over my medical history and the reasons for transplant.

I could ask questions at any time. I remember asking about a hospital bed, as my living room is large enough for one, but I only have one bed in the BR. I thought I could let the caregiver sleep in my bed and use the bedroom while I could sleep in the LR if I had a hosp. bed. She told me that Medicare wouldn't pay for it, as I would be ambulatory when I left the hospital. (As it turns out, the first caregiver stayed at my place, in my bed, when I was in the hospital. When I was discharged and my sister was here, she chose to sleep on the sofa the entire time.)

She spent about 90 min. with us. The caregiver also asked questions. I can't remember many specifics, but it is really an opportunity to learn more about post-transplant and who will be involved medically. I had a pre-transplant coordinator, but a transplant coordinator post-transplant. Same with hepatologist and other doctors. They change after transplant, except that the SW will remain the same. A different one did see me in the hospital.

Hope this helps and that there is a positive outcome to her evaluation.

Hugs,
Connie
Posted 12/28/2011 3:42 PM (GMT 0)
Sara,

Caregiver here.

I can confirm that the caregiver needs to be present for the important meetings, as advanced liver disease (and whatever your brother has going on) causes "brain fog".  Mike couldn't remember from moment to moment, said he mostly couldn't "listen" when the doctors were talking.  So, if I didn't know what was going on, WE didn't know.

Be sure you are certain her parents are enough WITH the program themselves that they can handle her care, if and when a transplant came her way.

Mike had a significant hurdles. First he had to be alcohol free for 6 months, and he was very very ill.  I don't think you have that problem.  You haven't mentioned it.  And they don't like the candidates to smoke either.

Then he had to stay alive with late stage liver disease and cancer.

It was pretty touch and go with him being hospitalized on and off during that 6 months wait. His kidneys acted up, he had sepsis (and almost died), and he had problems regulating his electrolytes.

You have to be sick enough to have a high MELD score and well enough to survive the surgery.

These places are looking for 95%+ SUCCESSFUL OUTCOMES.  That means their patients live through the surgery and make it a year aftr transplant in pretty good shape...ie alive.

They don't really do the surgeries on patients who are unlikely to make it...have conditions that add a complexity that would be hard to over come.  Mike had to have a cardiac catherization as he has underlying heart disease. But passed with flying colors.   With the renal failure episode, he had to be cleared by the nephrologist also.  Then a psychaitrist had to say he was unlikely to relapse into drug or alcohol use.  The tumor committee ruled that his tumor was not too large or too invasive to suggest a successful outcome.

So, to be really sick, yet well enough for transplant get you on and keeps you on the list.  Then you need for a tragedy in another family. For a while this was an emotional stumbling block for Mike. He felt unworthy of the donor organ...thought it should go to someone who didn't have self contracted Hep C.

But he got over that with the AA meetings and some therapy.  And thankfully, a generous donor family signed the papers before Mike died, and here is is today 9 months later, pretty much living a normal life.

The last months before suregy and the first months after surgery, he really needed help. To the bathroom, in and out of bed, with meals and meds, etc.  He was grumpy and tired, and very very weak.  Each day he gets better mentally -- which is a relief to this caregiver and to our whole family.

Good luck. Keep us posted.

Post Edited (MamaLama) : 12/28/2011 8:49:27 AM (GMT-7)

Posted 12/28/2011 4:17 PM (GMT 0)
My mother is lucky in that she was never an alcoholic. She ended up with fatty liver disease through her diet and years of obesity. She really does not even look sick. Even her doctor said he has a hard time believeing she has a MELD of 20 when she physically looks so healthy. She is luck that she is not as exhausted as many of the affected people on this site seem to be. She is still going to work and seems to managing ok. Thankfully she just sits at a desk. However, when I took her to the hospital back around Thanksgiving, she was in much worse shape. She was very jaundiced. She was confused. She had obviously been having trouble functioning as her makeup was literally smeared all over her eyes. Her ascites was awful. She had gained 16 pounds of fluid in 3 weeks. They drained 4.6 liters in the hospital. After they did that and regulated her meds she seemed ok. She now is doing better. She isn't as confused, however her ammonia levels have increased and she has begun lactulose for that. She is able to put on her makeup without looking like a mess. She seems to be doing better with her strict diet. She has been losing weight since she left the hospital. She doesn't have much of an appetite though. All in all she seems relativley ok which is a a huge benefit going into all the pre-transplant workup tests.
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