OUR STORIES
Every family is different. Every disease has its own challenges.
But by reading what other caregivers went through; how they met challenges; the solutions they found and lessons they learned, you will share in their hard-won knowledge. You may be able to avoid problems, or at least know how to deal with those problems as they arise. But mostly, you will realize that you aren’t alone in what you’re going through.
Our caregiver stories are in the sidebar on the left. They are listed by caregiver name, with keywords to help you find the disease you and your loved one are dealing with right now.
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Thank you for sharing.
Got at least a two day reprieve from worry: David’s at Piedmont Hospital all day today and tomorrow getting evaluated for his liver transplant. I still cannot believe that there’s a good chance that he’ll have a new liver by September. There are no guarantees, of course, but it’s a possibility
) I found out that they moved his evaluation up to May 7-8 from June 22-23 because he’s deteriorating more rapidly than expected. I know this sounds crazy but this whole diagnosis of “cryptogenic cirrhosis” really irks me. What do they mean they don’t know what’s causing this? I want something to be angry at. I don’t want a “we don’t know” diagnosis. I’ve read that the risk factors are high triglycerides (yes), obesity (no), diabetes II (no, but he had high insulin levels last year–pre-diabetic), fatty liver (mild, according to his biopsy), some medications (e.g. the calcium channel blocker he’s always taken for his tachycardia) possibly some hereditary component (his mother was diagnosed with end stage liver disease ~5 years ago), etc. I just want to know WHY. Not why us, but why is his body destroying his liver? Will this happen to my kids someday? It’s a very scary thought.
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Ah Sharon, I know just how you feel. My husband’s disease had a name, too (Primary Sclerosing Cholangitis), but the only thing they knew for sure was that only men who had had ulcerative colitis really severely got it. I don’t think they know any more about it now than they did 17 years ago when David was diagnosed.
I know it is really hard not to have something tangible to blame, believe me! But, you have to have something to be angry at so maybe they can tell you more after the evaluation.
An “I don’t know” is at least honest. What would make smoke come out of my ears is any doctor telling me to “trust us” or “wait and see”, etc. Unfortunately, they sometimes really don’t know.
Hang in there, though. I know this is really hard, but we are all here.
I was so happy to hear that he could be getting a new liver soon. We can talk more about that afterward because, of course, I feel like an involuntary semi-expert on all things liver transplant related…..lol
Hang in there
Still think about you every day
Laura
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Hi DLH friends – got a message from Sharon tonight…David is on the transplant list at Piedmont. His MELD score is very high and he will remain in hospital until a donor becomes available. As you may or may not know she’s working in the Republic of Guinea/Africa and I’m sure feeling helpless and far away. I know you all are keeping positive thoughts for her and all that come here for support. Happy Mothers Day to all the moms out there.
Marietta
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Thank you Mari, for letting us know the situation . I do believe that Sharon has put a whole new spin on caregiving. My thoughts and prayers for David and of course the family. I can not and will not try to imagine what Sharon is going thru being so far away.
~Char
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Hi Marietta, thank you for letting us all know as I am certain all of us here are holding Sharon, David and their families close at heart. David is in the best possible hands he can be in-there is no doubt in my mind. I am so looking forward to hearing from David once he has received the “gift of life” – all of this will just be a memory-the tide is coming in. We love you, Melisa & Dan.
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Thanks for the update. This is super great news for David, especially if Piedmont can get him a new liver as quickly as they claim.
Sharon’s situation sucks! It is bad enough to be going through something like this, but it just isn’t right to have to be so far away. My heart goes out to her SO much because it drove me crazy when I had to work out of state when my husband was getting really sick, but I at least got to come home on the weekends and my 16 year old son and 6 year old poodle were there for him. (you can laugh, but that little ole poodle saved his sanity when he was home alone all day!)
I had a thought (surprise – sorry, I’m really tired tonight). Don’t remember about the social security, but, even though it took six months after my husband was approved, he started getting benefits and my son got half on top of that because he was a minor. He also got on Medicare. I pray that after the transplant and things calm down a bit, they will find that Medicare will pick up enough of the maintenance tab that Sharon will be able to come work at home.
I know this is a very difficult time, but we are with Sharon and David in our hearts!
Laura
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So true Laura, Sharon and David have big mountain to climb, my heart breaks for her not being able to be there with him. As Melisa said he is in the right place, maybe that will help Sharon, knowing he is being taken care of. Laura you said we are here for them,so very true, DLH…. caregivers caring for caregivers, this just about says it all, doesn’t it.. thoughts and prayers for David, Sharon and their family.
~Char
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This site has become my anchor. I have it on my RSS feed so I will know anytime someone posts and look forward to the interaction. There are so many things caregivers go through that others can sympathize with, but can never truly UNDERSTAND.
I love this place because I can try and lend support to others and get comfort when I need it and know that there are those here who know what I’m going through.
I am having a difficult time right now because my daughter won’t talk to me. I miss her. We used to talk on the phone all the time. I know she’s going through her own troubles right now, but even though she sent me a corsage for Mother’s Day, and an apology for “being such a crappy daughter” I feel like I have lost 2 of the most important people in my life. I know that when she is ready she will contact me again, but the waiting is torture and I have to try really hard not to be mad at her.
I do have my wonderful son here with me, though. I don’t know what I would do without him….
Laura
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Laura,
It is my opinion, mothers and daughters are so much alike, so close, that it is easy to become angry with each other, when one doesn’t act or feel the way the other one thinks they should. Kinda like a friend (best) you know the feeling when they don’t get you, or do something that disappoints you, etc. My mom and I have daily disagreements, I believe it is mostly my fault as I seem to have misplaced my patience. She is failing, and at times I can not accept it.. so what do I do; take my inability to cope, out on her! I sure hope things will work out between you and your daughter in the near future, as I am sure this is not an easy day for you, How wonderful that your son is with you, sons and moms seem like a less combative twosome, at least it is in my family.
Thinking of you.
~Char
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Char,
I am sorry that I didn’t make myself clear. The hardest part of what is going on with my daughter is that there IS no anger. We had no disagreement. I’m just not what she needs right now, and while it really hurts me as her mother, I can only sit by helplessly while she tries to pull herself together. She is having financial difficulties and her father could always convince her that tomorrow will be better. I can say the same things, but she will never hear that encouragement from him again and is having a hard time handling it.
I wish I could help her, but I am in no better shape financially. I am trying to get a job while fending off foreclosure on my house. We do have some financial help, but getting a job when you’ve been off the grid for 10 years is a real challenge!
I also have some contacts who live near my daughter and would let me know if anything was amiss so, at least I know she is physically okay. A mother’s work is never done….
Laura
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Well, I thought about it and decided that my daughter had enough time to do whatever she needed to do alone and called her this evening. She answered the phone and we talked until her battery died. All is well (for the moment). She does get spells where she doesn’t want to talk to anyone, (I’m that way, too) but I guess the time got away with her because she didn’t realize it had been so long. We had a wonderful visit. Nice thoughts to go to sleep by….
Laura
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Laura,
So thrilled to read your post, great to know you had a nice talk. We can only live day to day, so for your lovely day, I am happy. Wishing you and your daughter tons more.
~Char
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My sweet man was diagnosed with Prostate Cancer in Dec. 08. We found each other somewhat late in life. Me 39, him 53. It has been considered advanced from day one, but has progressed to lymph nodes, and is considered metastized. He has also had some other issues, so I guess I would say I have been his caregiver for awhile, and willingly so. He is presently on his 3rd hormonal treatment type, and also has gone through radiation. He is now 64 and I am 51. I am not finding it easy to do self-care and feel overwhelmed most of the time. I am trying to stay in the present and not focus on the future, but it is a work in progress. Thank you Jean for starting this page.
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Hi Susan,
The feeling of being overwhelmed and being a caregiver almost goes hand and hand. I am sure by the information you have provided, your guy has some good and bad days, as is expected. It takes time to come to terms with the caregiver way of life, not much time for the little things, ( especially if you work outside the home) not much time for your friends, not much time to relax, and not too many people that understand why, unless you are or have been a caregiver. I try, as you do, to stay in the present and appreciate each day as it comes. It is hard sometimes, and at times seems almost impossible, but somehow we get through. I understand how you are feeling, you are definitely not alone, and I am very glad you found us here @ DLH.
~Char
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Thank you Char,
Yes recently I realized I have been isolating myself severely over the last few years. (I am also losing my hearing, so that hasn’t been very helpful).I am gald I finally posted on here, as I have been mostly reading the information. I also finally joined a support group which should be helpful.
Thanks for replying!
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Susan, I’m sorry the two of you are having to go through this. As you know, there are quite a few of us here who understand exactly what you’re feeling. You bring up a very good point: it is not easy to do self-care. It’s easy to give and care for a loved one all day long and still feel at the end of the day that you should have done more, but finding the time and energy to turn that care back on yourself, well, that would be just plain selfish, wouldn’t it? Nope. Smart, that’s what it would be. The two of you are a team, pulling together to achieve a common goal. What would happen if a football team went out on the field to play the big game, with half of the team exhausted and malnourished?
You were so wise to seek out a support group. I hope that with their, and our, support you’ll be able to find a way to carve out some time to nourish yourself and recharge those depleted batteries.
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It has been interesting, as I have been listening to myself think over the past year or so. I have been internally critizing people in my head,judging and feeling resentful. Not usual for me at all. There is a part of me that is weary from all of the drama, and money problems, and lack of intimacy. But just when I think I am done for, my partner and I find our way back through the muck of illness and fright. I thnk the internal negativity stems from holding my tongue to my sweetheart. I can’t be angry at him, so I guess I have internalized it. I just graduated with a Master of Science. (yes I was in school during my DH’s diagnosis.) I am happy it is over, and that has taken some of the stress away.
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Susan, one thing you must do right now is cut yourself a LOT of slack. We are always saying “be gentle with yourself”, and we don’t just mean your body. It’s so easy to berate yourself for the “bad” thoughts that go ricocheting around in your head all day, and keeping your mouth shut so that none of them come flying out takes a lot of willpower, which drains your energy, which makes you tired and more negative, which feeds the “bad” thoughts…it’s a vicious circle that can become an internal tornado. You need to release some of those thoughts. You can always come here, and I think it would be good for you to tell us more about what you’re dealing with, but a support group or good friend you could vent to would help a lot, I think. Once you let some of those thoughts of anger, resentment, fear, sadness, and loss, out in a safe environment you’ll feel better.
Having an illness crash into your life changes everything. You might find yourself giving more and more and more, and getting less and less and less in terms of affection and comfort in return. It’s not fair, and it makes you feel completely alone. But that’s exactly what your sweetheart is thinking about his illness – it’s not fair, and he feels very alone. It doesn’t matter how much you give and give and love and support, this illness is inside his body, and that is very isolating.
The fact that you keep finding your way back means there is some good stuff there, worth the muck and fright.
Keep the lines of communication wide open, and remember that men and women say and hear and feel things differently, and be gentle with each other. Make a point of sitting down from time to time to talk about what you’re both feeling. The fact that he’s the one with the illness doesn’t make your feelings any less powerful or valid. You’re going to have to find a way to deal with the lack of intimacy yourself. If you tell him you miss it, he’ll feel guilty and pressured and inadequate and end up pulling away even more. If it’s the cuddling you really miss – the emotional connection – then tell him that. Many men equate cuddling with sex – like it’s step one in foreplay on the way to sex. You have to try to make him understand that for a woman, being held is step one, step two, and step three on the way to feeling loved. If it’s the actual sex you miss, buy a vibrator and make do. Because the combination of drugs and stress are going to render your guy impotent, and that’s going to affect how he sees himself. If his image of himself is all tied up with his sexual performance, you’re going to have to lead him to the realization that sex is only one small part of your life together, and one that fades, as nature intended (contrary to what the pharmaceutical companies would like us to believe).
Everything changes. The only thing we can keep young and vital in our lives is love. It’s the only thing we can rely on to see us through the fear and stress and exhaustion. Support each other. Lean on each other. Nurture your friendship and that will keep your love going strong and nurture you back.
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What a perfect, frank, and honest reply, Jean. You’re right: love’s the only thing that matters. I’ve been so blinded by so many things for so long, but it’s really just as simple as that. Love…
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Jean,
Thank you for what you said about the sex and affection. I think we don’t talk about that because we don’t realize that what is happening to us is not unusual AT ALL!
I went through the exact same thing with my husband when he first got really sick in late 1994. I finally just sat down on the couch and put my arms around him. In fact, my mother had to encourage me to do that, because with David it was “don’t touch me unless you mean business!” He tried to push me away because he couldn’t go any farther. When I refused to let go, he finally gave in and to his surprise, found that he liked it! That day changed our whole relationship. We became closer since we had lost a rather basic form of intimacy, but a whole new avenue of affection and closeness opened up for us and we never lost it.
Don’t lose heart EVER!
Laura
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Laura, I’m so glad you were able to get past that male libido barrier with David. I get so mad when I see commercials for Viagra, etc., because these drugs INCREASE TESTOSTERONE, and testosterone can lead to prostate tumors, and cause blood clots and liver damage. Anyone who has battled prostate cancer knows that the standard treatment is therapy to LOWER testosterone levels because testosterone FEEDS prostate CANCER.
Meanwhile, the pharmaceutical companies are trying to convince men in the very age group most at risk for prostate cancer that what they need is testosterone!!
If someone came up to you at a party and said, “Drink this! You’ll be able to party and dance all night long!”, but then you found out that the drink could lead to your feet rotting and falling off in a few months, followed by death, would you drink it? Wouldn’t it be saner to say, “No thanks, I know I can’t party like I used to, and after a couple of dances I have to sit down, but I can still enjoy the party, and I want to keep my feet and watch my grandkids grow up.”??
When we’re young we’re encouraged to act our age (act mature), but when we mature we’re told we need to hang on to our youth at all costs. What a crazy world.
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Thanks for all the info and encouragement, everyone. I will definitely call that 1-800-LIVER number when I get back to the States on March 28th for leave (I can’t call 1-800 numbers from abroad, unfortunately).
The info re: people living 15+ years with a liver transplant was particularly encouraging. I had read that the 10 year survival rate was something like 52%, which didn’t sound very promising. I guess that it all depends on the individual, their health at the time of the transplant, their mental state, etc.
I’m going to ride the backs of the gastroenterologist’s office this week, making sure they send that information to Piedmont Hospital so we can make the appointment for the evaluation. The last time we asked for a referral, it took them two weeks and this office’s records are all electronic, so there was no excuse.
Does anyone know if you can switch doctors within a practice? My internist said that this is usually frowned upon, and that some practices have rules against it. I say “Hogwash. I don’t like this gastroenterologist, and I want my husband switched to the doctor he had when he was hospitalized for the varices.” The bad part is that I can’t just leave this group of doctors. Our city doesn’t have that many gastroenterologists, and the other group in town almost killed my mother-in-law, so I’m certainly not going with them.
Got very mad and ugly with David the other night, and now (of course), I feel terrible about it. I just cannot comprehend how anyone could look at those two little faces every day and not do everything within their power to stay here and take care of them. I’m going to have a lot of work to do when I go home for leave. I’m going to try so set up some kind of “concierge” who can get certain things done from home (e.g. phone calls, sending me paperwork that comes in, etc.) that I cannot get done from here.
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Sharon,reading your posts always makes me think of something new to say. First, is to know if your gastro dr specializes in the liver. His behavior does seem rather strange to me. In the group where my husband went, only 2 doctors specialized in the liver, all the others were just regular gastro. Second, if your husband is also uneasy with this doctor, you might consider trying to get in touch with the doctor you liked when you get home and he could possibly help you. This is a “it takes a village” type of thing. Transplant units are not just interested in the physical well being of the patient, but their mental state as well as what type of support group they have, how determined are they to have the transplant, etc. That is why you really should delicately check around inside your local practice. Unless the hospital that does the transplant says otherwise, this man will be your husband’s doctor for the rest of his life.
Also, I kept a diary during our experience and afterward, my husband added his thoughts. It is a day by day account of what was going on. Some days it would be that I just took my son to school. We turned it into a book, but no publisher was interested He named it “Mickey Mantle Saved My Life” because he was one of the lucky ones to have been caught in the flood of donors after Mickey Mantle had his transplant and went on television. If anyone would like a copy of this diary, just send me an email address and I’ll be happy to zip it to you. One last thing. I was in sort of the same situation as you, but I was just working out of state and coming home on the weekends. A few times while I was away from home, I just wrote everything I was feeling down. All my resentments, fears, nothing held back. I read it a couple of times, then destroyed it so no one else could see it. It did help to get it out of my system, though! Keep on keeping on…….
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Sharon – regarding your question about switching docs within the practice – It may be “frowned upon” but I believe it can be done. When my Mom was sick (a year if not two before she died) she loved the doc who took care of her in the ICU and really had no “connection” with the pulmonary doc from that practice who had been caring for her in the office. This guy “got it” and was such a sweetheart. The office staff kind of hemmed and hawed but we got it done. Laura makes a good point about being followed by someone who specializes in livers/transplants – here in Indy we have the IU Med Center. (Sadly working in the poison center some of our acetaminophen overdoses end up on that service…but that’s a whole different story). Love the idea about writing down the anger/frustration then getting rid of it. Most importantly try to carve out a little “you time” during your leave … (easier said than done I know) but you need to take care of yourself to keep pushing that boulder up the hill. Hang in there – March 28 will be here before you know it!!!!
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Dear Sharon – Take your pillow and start flailing it around. Slam it on the bed as strongly as you can, over & over! Try to get out some of your anger & frustration physically. Yell & scream as loud as you can. Run in place until you fall on the bed. Do whatever it takes to get yourself calmed down. You need to get rid of the excess stress hormones that are building up inside your body. Then with your mind at peace (or at least a little bit better)you can face these unbelievable challenges head on without being ruled by the stress. You have us all pulling for you, knowing that you a very strong person. And you will have to be the strong one for a long while, sorry to say. Love to you, David & the girls, Joan.
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Hey Sharon, you are making amazing progress. You are incredible. We are here to support you and your family. I’m not the best person to ask about changing doctors within the same group because we moved out of State to find the help we needed. I like what Laura said about making sure you are with a liver specialist (a hepatologist is the title of the person who saved us, based on Dan’s blood work a MELD score-model for end stage liver disease- told us how sick Dan’s liver was)-a hepatologist will know how to read the blood work, our GI guy didn’t know enough about a meld score, hence our need to go out of State. We still use the MELD score to determine the function of Dan’s liver. Google the doctors that are within your group to find out who is the liver specialist and that will give you an excellent reason to change doctors within the group if needed. Thinking of you. Melisa
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The doctors who we’re being referred to at Piedmont Hospital are hepatologists. That’s why I’m so ticked off about the 4 month wait for MUSC, and now having to wait again to be seen at Piedmont. What if it ISN’T crypotgenic cirrhosis and it turns out to be something else that this gastro has missed? What if something could be done to stop its progression and we’ve just wasted precious time? I’ve said this to David again and again and it just doesn’t seem to sink in. Don’t want a liver transplant? Good! Make the calls and get seen by these hepatologists who can give you a definitive diagnosis. His case is very, very strange, and none of the pieces of the puzzle fit: he has one gene for alpha-1 antitrypsin deficiency, and the gene he has never causes the disease by itself. He also has one for hemachromatosis, but again, you need two genes to have the disease. Then we have his mother, who is, in essence, dying a slow death from liver failure, but she has NASH and NAFLD, diabetes II (she’s had it since her 30′s or 40′s), and took statins for years for high cholesterol (she’s had 2 heart attacks). David had no NAFLD, has no diabetes, but he WAS on statins for high cholesterol until I took him off of them last year. So again, where did this cirrhosis come from?
And yes, I know about MELD scores, but I’ve not yet been able to get that information from his gastro. I don’t like doctors who tell you one thing and then change their story. I was told before I left that he needed a repeat scope to make sure his varices had healed. Nope. He went in there and banded more varices. Huh? What varices? You indicated that he didn’t have any more after that last banding. And then I get a call in January from my husband saying they scheduled him for ANOTHER banding. Again: huh? You either give it to me straight and/or answer all my questions or I find another doctor.
Before I forget: what type of protein should he be eating? The only dietary restrictions he was given were “no salt” because of the swelling, which he only developed in February. We were given no other guidelines re: what he could/could not eat.
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Hang in there Sharon – you are an amazingly strong woman with the passion of a mama lion. This gastro isnt making much sense to me either. Hope you can get into Piedmont ASAP.
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Sharon, I found this regarding the best diet for Cirrhosis: In most cases, a diet for cirrhosis should include sources of lean protein, such as fish or chicken. There are certain conditions related to cirrhosis in which the protein sources should be from plants, such as tofu, nuts, lentils, or beans. For example, if the person is affected by encephalopathy or if the cirrhosis is worsening or not stable, then meat-based proteins should be avoided. http://www.wisegeek.com/what-is-the-best-diet-for-cirrhosis.htm
Don’t forget that brown rice and black beans eaten together create a “perfect protein”.
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Sharon,
Regarding David’s diet, as liver failure progresses, the liver becomes unable to process protein which, then, turns to ammonia in the system causing hepatic encephalopathy, something not easy to miss because it really messes with the brain’s ability to function.
At one point, my David was literally behaving like a 5-year old. Another person we knew at the hospital would run out into the front yard and take off his clothes so his son had to run and bring him back in.
At David’s evaluation, the nutrionist saw him transform before her eyes because he had eaten eggs for breakfast and started losing track of what was going on around him. Even at that stage, she told us he could have the protein equivalent of one medium pork chop per day.
If your David is not exhibiting any irrational behavior, then his liver is still functioning well enough to process the protein.
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Hey Sharon, ask your hepatologist for a consult with a dietician when you go to Piedmont. Hopefully David’s appointment is soon. My Dan started at 120 grams of protein a day and is now down to 85 grams (we weigh everything). Dan also takes lactulose to control the ammonia buildup and encephalopathy. He must have 3 BM’s a day to release the ammonia, hence the lactulose. Our Primary Care doctor said years ago they didn’t recommend eating any protein-so-it is crucial that David has someone in the liver world come up with a plan for him. It is a daily watch for us. If Dans hands start flapping I know we are in trouble. For protein we make shakes at home with milk, ice cream and protein powder (our dietician recommended this to save us money). We also make beans at home for burritos because we know there is no salt in anything we do. A no salt diet is imperative. We ate at a chinese restaurant before we understood these things and Dan ended up in the emergency room having a hepatic encephalopathic attack due to salt. That is why I am with Dan 24/7 because once that attack happens he has no idea who he is, where he is…That is why we live near a hospital that understands liver patients, last time this happened to Dan in Reno beginning of December it was the first time they had seen a person with this condition. You love David so much Sharon and you are doing everything humanly possible to help. I am thinking of you.
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Laura, Melisa, thank you so much for sharing your experiences with Sharon, and all of us.
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This is for Sharon and anyone else these posts may apply to. If Melisa and I give conflicting advice, you should take Melisa’s because mine is from 17 years ago. I am thankful they have come so far in these past years.
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Hi Sharon, when Dan had ascites (swelling) they had to perform a “paracentesis” at least once a week to drain the fluid. This is a common practice now. Banding and scoping continued until he received a TIPS. We had two choices, continue paracentesis regularly or encephalopathy which gets more severe with the TIPS (a shunt in his liver). Not every one is a candidate for TIPS. Is there someone that lives near David that can at least physically check on him everyday? Right now you all are in the thick of it. Being listed on the liver transplant waiting list for Dan has saved his life to this point. We are not afraid of a liver transplant. We advocate for those people across the U.S. that are on the waiting list and we honor the donor family’s who are heroes. You will be home soon. You are not alone. You are doing every thing you can to learn every thing you can. I am thinking of you.
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Hi Sharon -
This is Dan, and I’m the guy fortunate enough to have Melisa as my caregiver. I’m caught up with your experiences (as posted here), and simply want to encourage you, and maybe fill in a couple of more gaps. This will probably be a long post, so bear with me.
In my case,(and each patient is different) as the back pressure built in my liver, it began to affect my kidney function. That then caused the fluids to find a new place to go, specifically my legs (edema) and abdomen (ascites). Next, the increasing blood pressure led to varicose veins in my esophagus (esophageal varices) which eventually burst.
At that point, I was becoming encephalopathic due to the toxins that were building up, specifically ammonia in my brain, because I couldn’t eliminate them. Encephalopathy is sometimes called “foggy brain” and causes loss of memory, loss of concentration, confusion, a slowing of reflexes, and in my case, blackouts that become comatose episodes if not dealt with quickly. In and of itself, ‘E’ is not life-threatening, but there were times I couldn’t even look at a computer screen or TV, I couldn’t sustain a train of thought, and obviously depended upon Melisa to keep me on track even while she made medical decisions, dealt with Social Security, Medicare, Medi-Cal, doctors, appointments, lab work, and the myriad other issues involved. Without her, I’m completely convinced that I would not be writing this now.
After six weeks in the hospital, (3 in Nevada, 3 in California) I was discharged about a week after having a TIPS procedure. (That’s a Trans-jugular Interhepatic Portal Shunt.) Basically, it’s a mesh tube that’s in my liver. It allows my liver to accept and process as much blood as it can, with the rest of the blood passing through unfiltered and toxic. I chose to undergo that because it reduces the pressure and removes the risk of the varices bursting. However, it increases the risk of encephalopathy. Until the TIPS, endoscopies were common and always involved more banding.
So, that brings us to protein. Because I had become malnourished in the process, doctors and nurses urged me to eat protein to rebuild muscle tissue. The problem is that the by-product of protein digestion is ammonia. It took a while to get it balanced out, but I started at 125g of protein a day, which is a lot of protein. We lowered it to 85-95g a day, and currently I eat a minimum of 65g daily, preferring to keep it at about 75g. I do eat meat, including beef in small amounts, and include beans, a high-protein cereal, and greek yogurt which is high in protein. At 65-75g a day, I’ve been able to add fruits and vegetables back into my diet.
Protein is important because it draws the fluids into the digestive tract from the abdomen. In order to control the ammonia build-up, I have two prescribed methods that I follow religiously. First, I take 30mg of Lactulose once a day, usually with lunch. This is an artificial sugar in syrup form, and at one point I was taking 100mg daily. Lactulose bonds with the proteins and carries them out of my body. It’s basically a laxative. If I only have two BMs a day for two days, I start to increase (titrate) my lactulose intake, on my own as needed, as per my hepatologist’s instructions. I’m careful with it because if I take too much it takes three or four days to get back to normal, if you know what I mean. Taking lactulose without protein seems to be a waste of time no matter how much you take, as related to me by other patients on vegetarian diets.
There are a couple of simple tests that let Melisa know when I’m getting encephalopathic. The first is “stop the bus”, which David’s doctors should know about. This test reveals involuntary ‘flapping’ of the hands. The second is answering simple questions. I’ve been known to claim that the president’s name is Dan, that it’s 1984, that it’s 1999, that I’m from ‘earth’ (that one got a chuckle from the doctor), etc. After going into a coma three times, plus a couple of near-misses (Melisa was able to get me to drink some lactulose and I eventually had a BM), I can begin to see signs of it myself if I pay close attention. In most of the above cases, I don’t remember anything, I’ve blacked out, ‘the lights are on but no one’s home.’
The other med I take for ‘E’ is Rifaxamine (aka Xifaxine). That’s a pill I take twice a day and it reduces the amount of ammonia that my gut produces.
Everything else I take is vitamins and minerals that my liver no longer stores or produces. Those are scheduled four times a day so my body has what it needs when it needs it.
My MELD score is currently 15. That number changes to reflect my condition every time I have blood tests drawn. Here in California, my MELD score needs to be above 30 to get a transplant, and that number also changes. (In August of ’09 I was at 29.) 15 is a critical point because if it’s below 15 the surgical risks involved are not worth getting a transplant. A MELD of 6 will qualify a patient for the national waiting list.
I think that’s most of the gaps I can fill in for you at this point. There are a couple pieces of advice I can give you though.
All you need is one good hepatologist. All you need is that one good nurse in his office. All you need is that one good dietician, etc. A very effective line to use, especially face to face when your frustration is high is – “I need a hero. Will you be that hero for me today?” When no assistance seems to be forthcoming from anyone, that can work wonders.
Once those people get to know you and David, when they see how committed you both are to the process, and most importantly when you’re consistently compliant, they’ll go to bat for you and will not give up. The things they really look for are a strong support system for the patient (you, your families, etc), compliance, and commitment to the process.
When you get a chance to meet with the doctors, be prepared. Have a list of questions, start at the top, keep on track as you work through them, write down the answers, and let the doctor move on to the next patient. The liver is very complex, good specialists are in high demand (my hepatologist carries a case load of 1200 patients), and you’ll be demonstrating your grasp of the complete situation.
Finally, don’t give up. Don’t Lose Heart. Keep pushing at it until something gives, and then grab it and don’t let go. (When I was discharged with no hope, Melisa managed to get a transplant evaluation the next day, in San Francisco. We loaded up, me with my oxygen tank and a plastic urinal in the back of my brother’s van, showed up for the two-day process, and stayed for two months.)
In closing, know that there IS hope. There are people here watching you, and watching out for you. Yes, it’s a long strange trip, but your story is already inspiring many of us as you embark upon it.
I wish you peace.
Brother Dan Palmer
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Bro Dan,
Your knowledge is only overshadowed by your kindness, and vice versa.
~Char
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Dan – Thanks for sharing your experience strength AND hope…you and Melissa inspire me and make me remember to be grateful for each and every day.
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Thank you, Brother Dan, for sharing your experience and your hard-won wisdom with Sharon and the rest of us. You and Melisa are a force, and such an inspiration.
Proud to be a fellow earthling,
Jean
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Thanks so much, Dan, for all this useful info! Some of it (e.g. the lactalose) I knew from my mother-in-law, who has been in “end stage” for about 7 years now. It looks like we’re going to be seen by a hepatologist/transplant specialist at Piedmont Hospital in Atlanta when I’m home for R&R (I leave tomorrow, and I’m back here on April 12th), and while I’m home, I will set up the appointment for my husband to be seen by a hepatologist at the Mayo Clinic in Jacksonville, FL.
Luckily, David is one of the most compliant patients I’ve ever known. He’s always been the type who does whatever a doctor tells him to do, no matter how difficult or onerous, so that’s a huge plus in our favor.
Thanks again.
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Hugs to you Sharon. Please don’t forget to try and take care of YOU during your break. (trust me I’m better at saying it than I am doing it). Keep us posted – and vent when you need to. Your cheering section here believes in you … don’t lose heart my friend. <3 Marietta
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Sharon,
While any help I can offer is probably WAY outdated, since I’d never heard of a MELD score or any of the other neat things they can do now, I want you to know that I do read your posts and am rooting for you and David every step of the way.
I may be able to offer one piece of advice, if you aren’t already doing this or aware of its significance to you. I found out during my journey that the best way to communicate with the doctors is to know the NUMBERS. They take specific blood tests to determine the patients condition. Even during my husband’s last stay in the hospital, they were quite vague concerning his condition until I requested to look at his blood work. Everyone was more than happy to discuss that with me and actually treated me with more respect. An example for you (and Melisa) might be, once David gets a MELD score, have them explain and if the score changes, have them tell you specifically which numbers have changed that lead them to that conclusion.
Having that information made me feel, not exactly in control of the situation, but in control of what I KNEW about the situation.
Once, my David’s doctor stopped me in the hall when I was on my way to his room to tell me his white count was coming down, then she took me to his chart so she could show me the difference knowing I would understand.
Hope this helps you – getting a copy of blood work takes an act of congress here because of HIPPA, but they had no problem showing or telling me.
Hang in there and don’t lose heart!
Laura
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I am thinking of you Sharon. We are here for you. With love, Melisa.
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Sharon,
I am happy you will be traveling home for R & R. Sending out much love and positive thoughts for success with the doctors. David being such an amazing patient, should be of great relief to you, once his protocol is in place. As you have read, we all are here and pulling for you both.
Warmly,
~Char
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Another call home that’s left me hysterical. More days have passed and my husband still has not called his gastro or Piedmont Hospital’s Transplant Institute to get the referral for an evaluation. I just spent a nightmarish 90 minutes trying to get in touch with them myself from over here in Guinea(the numbers on their internet site were wrong), and then faxing his gastro about sending his demographics, clinicals, and our insurance info to them so an appointment can be made. I feel good that I’ve taken the first steps toward finally getting this appointment, but I’m so incredibly angry with him for doing this to me. I’m trying so hard to stay sane, keep us from going bankrupt, and keep our health insurance, and he won’t do anything at all to help me, even when I tell him that my stomach hurts so bad all the time that I’m popping meds like they’re candy.
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Sharon, you’re amazing. You’re holding everything together for your family. You’re doing all you can to help your husband while he’s in this stage of fear and denial. And all the while, far from home and missing them all so much. You’re angry, and with good cause. You’re pushing this boulder up the hill by yourself, wishing your husband would help, but he’s walking behind you, scared, dazed, and confused. I think this is a pretty common reaction, and it takes different people more time than others to get to the acceptance stage.
Continue to do what you can from Guinea, and try to let go of the worry and anger in between and concentrate on the amazing Sharon; her health and well being. We can’t help with the boulder, but we’re here cheering you on. ~ Jean
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I agree with Jean, Sharon. You are amazing and so strong. The unfortunate fact is that, if you case is anything like mine was with my husband, you are essentially dealing with a child now. He is so terribly scared and sick that he is paralyzed. It was much easier for me because I was at home, but you will probably be called on to to all you can handle and more besides. I understand your frustration, but the thought I always kept at the the forefront of my mind is that he MUST LIVE. Sometimes I felt he was only living because I willed it so. I KNOW you can do this and You are not alone. I have been there and it will be worth it in the end. You are in my thoughts and prayers. Hang in there…..
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Oh my dear Sharon … so much going on and David is still in vapor lock mode. I don’t blame you for feeling so angry. I agree with what Jean and everyone have pointed out here and KNOW that we’re all hear to cheer you on while you’re pushing that stone up the freaking mountain. Fear and denial are so powerful – and they seem to be paralyzing him – which is frustrating you. A while back someone shared this with me. Sometimes FEAR means Face Everything And Recover and some times it can mean “F” Everything And Run and you’re facing while he’s running.
Keep doing what you’re doing and know that you have a bunch of folks here that care and will feed you’re warrior spirit. Wish I could give you are real hug but sending it out. Hang in there!!
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I’m so sorry you have to deal with all these problems from so far away. You must feel you have the weight of the world on your shoulders and it seems like you really do. Maybe now that you have taken this first step for your husband, he will be more motivated. Maybe he’s been too afraid to do this or maybe he can’t accept the whole situation and he is just “frozen” in place from anxiety. (This often happens to me; instead of doing something I do nothing). I hope that once the whole process is started he is more able to help you by helping himself. Maybe this will get him on his way.
Hang in there! Mary
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Sharon,
How awfully stressed and frustrating for you. I agree with the comments that Jean, Mary and Laura have made. David is so many things right now, and first and foremost is his health. It sounds like he is extremely depressed and scared, and I don’t blame him. I am hoping and praying that he will admit to himself that he needs help, and make the necessary arrangements. Like you so far from home, holding it all together, he is at home, trying his best, I am sure to hold it together, and it has been my experience, that men never want to admit there is anything wrong with them. And of course please take care of yourself,I know, eaiser said then done. Stress is such an impossible thing to shake, especially being so far from home. I think you are doing an amazing job,please know we are here and care.
~Char
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Sharon, I have been giving your situation some thought. Do you have any family members who could help you keep in touch with medical people? My mother-in-law had Hep C and they were trying to get her on the waiting list, but my sister-in-law was butting heads with everyone so I took over and was able to get things accomplished. Also, I bought a month/week date book when my husband was ill and kept all my notes, who I talked to and when and what they said. I had a few different colored pens so on each page, I used different colors for whoever I talked to. That way, if I had to write a phone number in the notes section, I knew which person it was assigned to without unnecessary steps. Being able to look at that book and see that things were coming together did a lot to relieve stress for me. I hope this can be of some help to you. As always, my thoughts and prayers are with you and your family.
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Laura,
Your ideas are excellent, thank you.
~Char
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My husband, David (age 49), and I learned last October that he has end stage liver disease, caused by cryptogenic cirrhosis (a fancy way of saying “cirrhosis of unknown origin” – in his case it is probably something hereditary – his mother, age 76, also has end stage liver disease). We went from “he has low platelets” last April to a bone marrow biopsy in July to a liver biopsy in October to a nightmarish night last November when he had a hemorrhage of varices in his esophagus (that we had just learned he even had) to “you will probably need a liver transplant” while he in ICU recovering from the hemorrhage.
To say I’m scared out of my wits would be an understatement. We have 2 girls, ages 4 and 6, and I wonder what the future holds for him and for our family. Even if he does get a transplant in time, the life expectancy of a liver transplant patient decreases to about 53% over ten years. I lost my mother to a heart attack when I was 18, and I just cannot get my head around the idea that the same thing could happen to my kids. It’s my worst nightmare.
Adding to all the stress is the fact that I’ve had to take a job in Western Africa (we were both unemployed when we found out he was sick) in order to have health insurance coverage and to dig ourselves out of the debt that has accumulated from multiple layoffs the past 12 years (my husband was in manufacturing management–enough said). So he’s ill, I’m away from him, away from my kids, and losing precious time with both. He’s been in denial, dragging his feet on pursuing appointments with transplant hepatologists, and I get angry and frustrated that he’s so “vapor locked” with fear that he’s losing valuable time. We’re not even 100% sure at this point that he WILL need a transplant, but until someone figures out what’s wrong with him, that’s where we’re headed. His gastroenterologist was very clear on this, given the fact that he only has 10-15% of a functioning liver left.
We just waited from November until just this past week to get an appointment with a hepatologist/transplant specialist down in Charleston, SC (at MUSC) recommended by David’s gastroenterologist, only to find out from our insurance company that the hospital in question is “on probation” for having lower-than-the national average survival rates for liver transplants. I feel so betrayed by his doctor, and I could kick myself for trusting him. Now we’re back at square one, and we’re now pursuing appointments with Piedmont Hospital in Atlanta (2 hours from where we live) and The Mayo Clinic in Jacksonville, Florida.
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Sharon, I’m sorry you’re going through this – having to cope with everything while being so far from your family must be incredibly stressful. Thank goodness for email and Skype and cell phones these days, that must help a tiny bit. I have friends who are at the Mayo in Jacksonville for advanced prostate cancer, and they are very pleased with that hospital. Mayo has a good reputation; Piedmont has some good reviews at: http://www.yelp.com/biz/piedmont-hospital-atlanta; and yes, I could find no reviews for MUSC. Hopefully Melisa C will log in soon and share some of her hard-won knowledge with you. Hang in there, kid, we’re pulling for you. ~ Jean
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Sweet Sharon,
So much going on, I will keep you all in my thoughts and prayers. Too much for you to deal with, and not being home. I can not imagine the xtreme stress you are under, not to mention the years before this. I have a good feeling that Melisa will have great contacts/ideas for you, she is an expert in this area, going thru so much with her partner Dan. Be assured, we will do all we can do to help you through this.
With much love
~Char
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Hi Sharon. It took me this long to respond because there is so much to write and I don’t want to be overwhelming. I could go on for weeks about this topic. I was where you are now 2.5 years ago. Scared and terrifying is without a doubt an understatement. Sharon, it’s not going to be easy but you and your family can do this. There is hope. You are not alone. David is not alone. We need to find all of you some help. I have met so many people from our local CA Donate Life group that have received a liver transplant, many of them were over 20 years ago when the medical community didn’t know what they know now. These are the people David needs to meet and get involved with.
David may be too sick to get involved but I am hoping that he has some one near him to advocate for him? My significant other Dan, turns 50 tomorrow, bled out from varices, he lost so much blood that his heart stopped beating. I was with him when this happened and saw the whole thing. Thankfully he was already in ICU, code blue, the doctors revived him by CPR. An hour later the same doctor who saved him asked me and Dan’s immediate family how many heroic deeds did we expect them to perform in order to continue to save Dan’s life.
Frustrated, infuriated, extreme stress, all of those words can’t even come close to the nightmare that began for us with Dan’s health and the medical community that we were involved with in August of 2009. Dan did not have health insurance and was booted out of the hospital when he was alert enough to finally talk 3 weeks later. They removed Dan’s feeding tube and discharged him in a wheelchair on oxygen. They didn’t give us any follow-ups, any hope or any referrals. Dan had no idea what was happening. That is when the warrior mentality kicked in for me. I was fueled and fuming from the way Dan was treated and discharged. One of the other hospitalists actually said to me that the way Dan is going to be living is no way to live). Don’t get me wrong, there are true HEROES in this journey and you will meet them too!
The liver specialists are the people we need to get you and your family surrounded by-but they do need to CARE (sounds expected but you do need to find them). If your GP/PCP cares, even better, because they can get you in places quicker by referring (the nurse of the GP will be your best friend). My guy, Dan, is doing really well right now, he was listed in Sept. 09. Changes did need to happen though and are part of the reason he is doing so well-a weighed protein diet, no salt, rest, least amount of stress as possible, taking pills on time, an advocate helping him-too many things to go in to detail. There is a guy in our local liver transplant support group that has been on the waiting list for 13 years and he is functioning quite well. There is a woman in our group who was #16 (they went by numbers back then), who was transplanted over 23 years ago, she is healthy and happy. To get to where we are now we did have to move out of our home State to be near the medical specialists that were going to help us. We sold everything of value except for our car, we live in a tiny apartment and it was a major undertaking for us but we did it and looking back it was the best thing that ever happened to us.
We live in CA now but we may have to move again should Dan become critically ill again. There are so many people on the waiting list here in CA and not enough organ donors-which is the case across the U.S. The doctors may suggest we move to Memphis, TN or Indiana where the chances of receiving the “gift of life” will be better than here. For now, we wait. Dan does have cirrhosis and he does have end stage liver disease. What I know about Jacksonville, FL, because there is no helmet law, is someplace for you to take a serious look to be listed at. Cirrhotics do need be listed on the transplant waiting list. David may be suffering from a term called hepatic encephalopathy that liver patients experience. It makes them shaky, confused, not able to concentrate, not able to keep things on track.
David may be dragging his feet on a lot of this stuff because of something that is out of his control. In Dan’s case his encephalopathy is so bad that he isn’t able to drive, I take him to all appointments, keep his calendar straight, and take care of his paperwork, scheduling, advocate for him. I have quit my job and am his full time caregiver. I get paid a minimal amount from the county to watch after him with a program called IHSS (this could be a county program). It is barely enough to pay my bills but at least it is something. Friends have set up fundraisers for us in the past. Dan is on disability. I helped Dan with the paperwork for the disability process-he had ascites and pitting edema at the time. It was going to take 4 months to get approved but when he ended up in ICU I managed to get a letter from the hospitalist to speed up the process. It also took a letter to our Congressman to speed up the process (it happened to be during elections and that helped a lot). Dan is also on the State Medicaid program because of his income level. Sharon, all of this is a lot of work but it can be done. David does need an advocate.
Sounds like you just started work-find out if you can take leave, I think it’s called “FMLA-Family Leave Act”. David needs to apply for disability ASAP, even as soon as tomorrow. He is going to need someone to help him in this process because of his condition. Being listed on the transplant waiting list is the best thing that can happen for David right now because once he is on the list he will have a team of people helping him. Because Dan is on the waiting list, I have a 24 hour hotline I can call (I have had to use the hotline several times). I looked online for the phone number for the American Liver Foundation Call 1-800-GO-LIVER. Ask them to be referred to the nearest liver transplant support group and/or contact information so that David can start surrounding himself with people who will be able to supply him with even more resources.
One of the hardest parts of this process is feeling like you are alone and that no one understands your situation. Finding our local liver transplant support group saved my life even as the caregiver. I found more resources from them than from any doctor’s office. As a matter of fact, once Dan was placed on the transplant waiting list in CA he was required to attend the support group that was held in the hospital.
Here is another site: http://donatelife.net/local-contacts/ The Donate Life group consists of transplant patients, recipients and donor family’s. This group is where you will become fluent in the organ donation process.
Sharon, I hope some of this information will help you. There is support it’s just sometimes hard to find. May be your fear can be what drives you full steam ahead-I know it did for me. Never give up, take time to cry, but keep on moving forward. I am here. We are here.
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Thank you, Melisa, I knew you’d know just what to tell Sharon. Most of this is beyond the realm of my knowledge, but Sharon, one thing Melisa said that I do know from personal experience: the right nurse can be your best ally and make all the difference in the world. I know you’ll be spending a lot of time on the phone with David’s doctor’s office – as you speak to the staff and nurses, be alert to the ones who may end up being your angels. ~ Jean
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Melisa,
Your knowledge gained while being thrown into the eye of the storm , is invaluable.
Thank you for commenting, thank you for being able to help so many people in need of transplants, and most of all thank you for sharing with DLH.
~Char
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Melisa,
I was reading your story very carefully just now and you are one tough gal! I am so glad you have found support groups. There was no such thing fifteen years ago. My husband, David, had his transplant at Baylor in Dallas in 1995. We were so lucky because just when David was getting close to the top of the list, Mickey Mantle had a transplant there and publicized the need for donors and they came pouring in! The whole transplant floor was full to bursting when a donor for David was found. The fun (if you can call anything about this process fun) was that David’s room was right next to Mickey Mantle’s who had a guard outside his door so no one would “bother” him. I would visit with the guards when David was sleeping because they were BORED and bring them cookies and stuff. Don’t know why you should be interested in that, but once I start ‘talking’ I can’t seem to stop!
I am so glad you and Dan are in the system now. Everything changes once you have run that gauntlet! I don’t know all of the stress you are having because we did have insurance, but David applied for Medicare and was accepted immediately. Too bad the benefits didn’t start for 6 months, but our teen age son also got benefits because he was a minor. In Sharon’s case, they should be able to draw for their children, too. My son got half the amount my husband was getting.
Just want you to know that I am thinking of ya’ll too and praying for you.
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Sharon – Please hold close to your heart that I , and so many others, are holding you close to ours. I pray for you, David & the girls everyday. DLH is a great comfort so come back often. We love you & are praying for the best – peace to you! Joan
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Sharon,
I have been browsing the internet searching for liver transplant caregivers and thought I might be able to give you some comfort.
My husband had a liver transplant in 1995 and survived 15 years. I’m sure he would still be here, but there is still so much they don’t know about long-term survivors. They really should do liver biopsies on some regular basis because his cryptogenic cirrhosis hid from blood tests. By the time they discovered it, it was too late for him. He,too, had the a hemorrhage of varices in his esophagus, but only survived a few weeks because the loss of blood threw his whole body into shock. His kidneys were also failing at the time because of the medication.
Now – this is not meant to scare you, but to let you know that they are learning more every day about transplants. A transplant can save your husband’s life! Mine led a perfectly normal life for 15 years by just minding the doctors. Every year they get better and better. Remember Jim Nabors and Larry Hagman, both who had transplants before 1995 and are still living.
Please don’t give up hope…..
Laura
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Laura, thank you for adding your words of wisdom in support of Sharon. May I suggest you read Melisa C.’s story – she has some great liver transplant resources, including a support group.
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Jean, I have read Melisa C.’s story and I was just trying to insert some some hope for everyone. Unfortunately, neither Melisa or Sharon’s stories apply to me. I was really looking someone who had lost someone after years of living on the edge post transplant. Sorry I changed email addresses……
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Laura, I sincerely hope you find the support you’re looking for. I know how important it is to find your “club”: people who know just what you’ve been through and understand all the problems that go along with the disease or illness you and your loved one encountered. If you don’t find your post transplant group, come back to us, we do understand about life on the edge and will do what we can to offer a steadying hand.
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Sharon – I’m so glad you are sharing here at DLH. (Glad is a poorly chosen word but you’ve come to the right place) I am so sad that you and David are going through this … I’ve also read Melissa and Dan’s story – and like Jean and Char have already said Melissa has been down this road and I know can be of help. Just know that there are many caregivers here to support you and hold you up. I can’t imagine how it feels to be so far from home …hang in there and keep us posted. <3 Marietta
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It’s been 12 days since my stepfather passed away from Prostate Cancer. The doctor estimated that he had 3-4 days left and to call any loved ones that would want to say goodbye. Until that day, were were told he had 3-4 months. It was a shock. The doctor needed to know if my stepdad wanted to be in the hospital or if he wanted to remain at home. He wanted to die at home and Hospice was called. The Hospice nurse arrived within the hour and by late afternoon, all medical supplies, hospital bed, oxygen, etc. had been delivered. He didn’t require any pain medication until the last few days. He held on for a week and a half, not 3 days. We were with him around the clock. One night, we made my mom go lay down in bed, promising we would wake her in an hour. Twenty minutes later, we found her in his room, curled up in a chair, her hand on his arm, fast asleep. By this time, he hadn’t been responsive since the prior day. I went to the other side of the bed held his hand and felt the tiniest grip of his fingers around mine. Was it just reflex, possibly, I think not. I believe in GOD, yet always feared the unknown. I was in his room when he passed and was given the greatest gift I will ever receive. That fear is gone. I can’t explain why, it’s just a peacefulness inside of me that didn’t exist before. Our hospice nurse was, IS an angel on earth. We were so afraid to hurt him, medicate, not medicate. She repeatedly told us what a great job we were doing. She could feel the love from all of us. Unfortunately, many of her patients aren’t surrounded by love. She lost her own husband 4 years ago and was a wonderful support for my mom. If I had no other reason to love him,(I have many), I would love him for simply loving my mom. So, we move on from here, a day, moment at a time. He is free from pain, prodding, tests, etc. He is in a better place, we are the selfish ones, just one more day to talk to him, look at him, laugh. What we wouldn’t give…
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Lisa
How sorry I am for you and your mom on the loss of your step dad.. I can find no words to describe the angels working for hospice. They have been placed on this earth to help us pass in a private, loving , and caring situation, with dignity. I am so happy for the peace you are feeling inside, and thank you for your posting. We all need positive reinforcement, and you just said a mouthful. My thoughts are with you and your family.
With Sincere Sympathy
~Char
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Char & Joan,
Thank you for your sympathy and blessings. Anyone who has experienced loss, understands how much the kindness of others helps the healing process.
Lisa
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I am an RN and love hospice, it is a joy to care for humans in their last days and to comfort the family around them. It is a privilege to do so. God bless you in your grief and loss,
Darcy
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Welcome, Darcy. We’re glad you’re here – nurses rock.
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Dear Darcy,
What an angel you are, helping and caring for souls in their final days. My Dad passed in hospice and my friend in hospital, the feel, the look, the difference was tremendous. Hospice,is such a loving, peaceful environment.
Thank you Darcy for being you, please know we can never repay you enough for the great undertaking you have been called into service for as a nurse.
Warmly,
~Char
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Oh Lisa – I am sitting here bawling, loving your words, feeling the feelings. You described your feelings about your stepfather perfectly. How perfectly they also fit my feelings – to a tee! Fear of the unknown is terrible, even with tremendous faith. How honored I was to be with my Dad when he passed. Thank you so much for sharing with us! Many blessings & comfort are hoped for you & your Mom. Gratitude is a wonderful place to be, is it not??? Joan
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Lisa, I’m so sorry for the loss of your step-dad. It is a story of a passing that is so beautiful and peaceful though. I can relate to that part about the gift, I think I know what you mean, as I felt that too when my brother died. When I learned we lost him, indeed I was devastated even to the point where I lost my voice temporarily right after hearing the news and suffered with a strange & uncomfortable sensation in my throat for months after as my throat felt constricted, but that gift you mentioned, that feeling like I didn’t need to fear death anymore was strangely there nonetheless right away and I too felt like it was something given to me somehow from my brother. My nieces said they felt it too when I saw them at his funeral. And yes, agreed as well – what we wouldn’t give for one more moment, so true. Peace Lisa, thanks for sharing him with us, big hugs, Karen
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Good to hear from you, Connie. One of the many things I love about DLH, is that we are in the same boat. Every once in awhile one of us, falls out and has to tread water. Those of us still “lucky” enough to be in the boat, will always lend a hand to get ya back onboard. Hope you are coping and doing well.
~Char
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Thank you for all the support I received. Mom passed away on February 23. I’m sorry I didn’t tell you this sooner. The past 3 months were a whirlwind of doctor’s appts., keeping mom at my house until she was too weak, putting her in a nursing home and keeping an eye on her there, then her death. She was only in the nursing home for 13 days. Everything happened so fast. Now I am cleaning out her things. I have made it through another blessing as a caregiver. I know I did my best. I think she felt that way, too.
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Connie, all the words we say at this time are trite and over-used, simply because they are the only words we have. They are, nonetheless, heart-felt: I’m sorry for your loss. I’m glad your mother had a good, long life and that she didn’t suffer a prolonged illness.
You were a good daughter to a good mother – what an incredible blessing, how lucky you both were. Remember, many of the memories that make you cry today are the same memories that will one day make you smile, so hold them close. ~ Jean
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Thank you so much, Jean.
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Hi Connie – Just checking in to let you know I am thinking of you and wondering how you all are doing. Joan
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Thank you Joan. Check my latest response. I’m sorry I was so slow in responding.
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Connie – How nice to hear from you. Understandably, you have had so much to deal with. We recently traveled through a similar path in the last 6 months, times 2.
I am sorry you have lost your Mom. And I am confident she knew what a wonderful, loving daughter she raised. I wish you peace in your heart & in your mind, and sweet rest to get you through the remaining difficult days.
{{{Hugs}}} Joan
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Connie, my thoughts are with you. And you can do this. Ask for help when you need it and don’t forget to take care of yourself. During trying times like these we tend to operate on auto-pilot. Only after the crisis has passed do we ever wonder how we actually got through it. So allow your auto-pilot to kick in and know that many people are thinking of you. Many blessings…
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Thank you. I appreciate everything you said.
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Oh Connie, my heart is hurting for you. We just went through a situation involving a family member with a brain tumor. My prayers are with you and your Mom. You will learn & experience much. I know you are a strong person. Let the love you have for your Mother be your guide as you face each day’s decisions and emotions. May God bless you! Joan
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I know I have been blessed with these opportunities to care for loved ones. I will make it.
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Hello Connie,
You have been through so much, and you sound like a very strong woman. I too know you can do this, but please don’t forget to go easy on yourself. My thoughts are with you and your Mom today. You have done a remarkable job in the care giving of both your husband and son. I believe your courageous spirit and your ability to give care will get you through this journey. You have my respect.
~Char
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Thank you. Mom made it through the biopsy and we will see how severe the tumor is. The surgeon says they think it is stage 3 or 4. He said she will not get better. More appts. to come.
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We are all with you Connie,as you care for your wonderful mom. Please remember to take a moment to exhale and take care of yourself, so you will be able to care for mom ” the one that has loved you since birth” Thinking of you and sending out warm thoughts.
~Char
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I posted before that my husband was diagnosed with Non-Hodgkins Lymphoma in 2005 and is now cancer free. In 2007, my 15-year-old son had Spinal Rod and Fusion Surgery. Two months out of school, with me as his tutor, and lots of worry later, he is doing great. Now, my mom is 88. She is a very young 88 I must admit. Around Chritmas, we noticed she was not responding to questions. Confusion, mixing words, or not even being able to think of words came on almost overnight. I thought dementia was setting in. After an MRI, she was diagnosed with 3 brain tumors that appear to be malignant. She will have a biopsy on Jan 20. Then, she will be staying at my house following the surgery. Her digression into confusion and inability to speak is becoming more prevalent everyday. I can’t even stand the thought of living without the one who loves me and has loved me since birth. But, I know she doesn’t want to be mentally impaired, either. For the 3rd time in 6 years, I am in the caregiver role. I can do this, I can do this…..
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Hi Connie,
As I was going through some comments, your’s popped up, so I am thinking of you and wondering how things are. You must be taking care of Mom now after her surgery, I realize how busy you must be, and hope you are able to get a minute or two for you.
~Char
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Thank you for caring so much. I hardly had time to breathe the past 3 months. I just got on here today and saw your comment. Mom went to be with the Lord on Feb. 23. I am coping.
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Dearest Connie,
Please accept my sincere condolences on the loss of your mother. I can not imagine the feelings you must be working through at this time, less than two months from her passing. You need to grieve and rest. You know you gave her your all, as she once did for you, as your loving mother. My thoughts are with you today hoping you will go easy on yourself, as you go about cleaning out your mom’s things.
I hope your son and husband are by your side, all united with warm memories. Please come back to DLH,when you feel you can, and let us know how you are doing. We are here for you.
~Char
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I was just going through the comments that were made during and after my mom’s passing. Thank you so much for all the condolences and encouragement. We may have never met, but please know you are a blessing.
Connie
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Connie, you’ve been through so much; so many caregiver roles – wife, mother, daughter. Time to rest and take care of you. You must lavish yourself with the love and attention you give your loved ones so you can heal. It will take time – take it. ~ Jean
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God bless you connie,as an RN let me know if I can be aof any help or comfort to you.I can research as well if you’d like……Darcy
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