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Caring for aging mom and now DB with cirrohsis

Posted by mockingbird (My Page) on
Tue, Aug 16, 05 at 7:53

Hello, I have not been here for a while (lurking only) but now I need some help.

My 91 YO mother has been with me for five years with leukhemia and just this week my brother has been diagnosed with advanced cirrohsis of the liver and has nowhere else to go but here too.

I will have to make a bed/sitting room in my living room because he cannot get up the stairs and he will be here tomorrow ! !

My most urget need, besides prayers, is help on nutrition, etc. He has NO appetite and the only thing that can be done, at this point, is stop drinking and eat healthy, well balanced meals.

There is no way that I can know now if he will or can stop drinking or smoking but I know that I can't handle it if he doesn't care enough to try.

Is there anyone here with "first hand knowledge" in dealing with this.

BTW, mother is just getting over, or not, pneumonia and the hospice nurse told me yesterday that she is doing better than she had expected. She has started spitting up fresh blood and I don't know if it is from her lungs or an injury to her delicate skin in her mouth from using the sponge mouth cleaners.

So, here I sit with two dying people and no training.

Thanks for any support. At this point I may just need a place to vent.

Carolyn


Follow-Up Postings:

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RE: Caring for aging mom and now DB with cirrohsis

You poor Dear...what a lot you have on your plate right now!
Altho' I don't have first-hand knowledge of your brother's situation, but may I suggest that there must be some support for you in caring for him thru organizations which deal with this, like AA for family members? My first thought when you said he had no appetite was to suggest Boost or Ensure...I used to add an egg and whip it all up in a blender for my Mom like a milk-shake: she got her nutrition plus the protein in the eggs. However, she also ate fairly well.

Are you alone at home with your Mom? Do you have siblings that could relieve you at times? If you don't provide any alcohol in your home, how likely is he to get it some other way? The smoking would do me in....Oh, I wish I had a miracle up my sleeve for you!

I hope other gals here can be of more help...I will keep you in my prayers as I do everyone on here...wish I could do more...

Blessings
Linda


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RE: Caring for aging mom and now DB with cirrohsis

Oh my, Carolyn... What a situation. Pray for God to give you strength and wisdom... It's good you have Hospice for your mother. (bro. also?) I'm wondering about the sponge mouth cleaners... My mother didn't like them at all! I, too, thought they were strong and rinsed the solution out before using them. (In your mother's case, with her delicate skin broken, is Hospice still using the sponges? I was always in the room when hospice worked on my mother. (She was 96 when they started.) The poor aides have so many patients to do that I suspect they don't realize that when they hurry they press too hard on the thin, delicate skin of the elderly. I quickly spotted the ones I had to constantly ask to please dab her skin gently, not to rub or "scrub". Mother said one time, "You'd think I was in a coal mine!" :)

Have you given your bro any ground rules? Is there going to drink available to him? If he's under your roof and in your care, you have every right to forbid drinking and smoking in your home.

May God help you and have mercy on your precious mother and brother. Keep in touch. ~breezy


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RE: an added thought

Carolyn, I bought a Vita-Mix machine. (It's simply a powerful blender...) Mother refused to drink the Boost/Ensure products. They were sickening sweet to her or something... Sooo I was able to cook healthy,balanced soups packed with meat and veggies, blend them and she loved to drink them. She would eat a little of "regular food", but the soups were her main source of nutrition for three years... ~breezy


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RE: Caring for aging mom and now DB with cirrohsis

Thanks for you fast responses. The only way for drink to get here is if someone else brings it unless he insists, in that case, he will have to go back to his apartment to die because I can't and won't just sit and watch. I live out in the country and there are no large towns or delivery service here.

breezy, I did the very same thing with the soup except I used my regular blender. Many veggies and chicken mostly. For mother I put in some unflavored gelatin to make it thick, at that time she couldn't deal with liquids but she is better now.

I never thought of the egg in the Ensure, good idea. DB wouldn't or couldn't do the Ensure when he was first in the hospital (Friday) so I will try to find some powdered protien to add to yogurt, which he will eat.

I have been surfing the net about his condition and read that some people shouldn't eat protien unless it comes from vegetables so Dsis is bringing some soy and almond milk and I can feed legumes. He is having a terrible time with fluid retention in his stomach and they just started diuretics (sp) yesterday but I know that asparagus, celery and lemons are naturals, if I can get them down him.

I am glad that the trouble with the sponges was not just me being to rough and it happens to others. I also get some Q-tip like swabs that have lemon flavored glycerine on them and I will start using just them.

My youngest DD lives here and takes care of mother when I am not here. I was retired for one year and volunteer administrator for a small Christian school in our church the last two years. This year we did not get enough students to stay open. Just proves that the Lord sees farther ahead than I do because my Dsis and I just found out my DB was sick Saturday week. There is no way I could have done both. DS lives about an hour from me but can come often when needed.

I will try the AA for some local support, I had not thought of that. Carolyn


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RE: Caring for aging mom and now DB with cirrohsis

Put flavorings in the Ensure. I have found that about 1/2 tsp of Almond Extract in the Vanilla changes the taste from yuck to fairly nice. It seems to cut that overly sweet taste. Your DB has a liver that cannot process food naturally. At this stage, it really doesn't matter if it's a balanced diet or not. Just get anything in him that he wants. His time is limited and the best that you can do will only extend it a short time. Relax.


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RE: Caring for aging mom and now DB with cirrohsis

Wow, you've got a lot on your plate.

Be very careful letting your brother into your home, it could be a disaster for your family. While you seem kind, he's probably very manipulative, certainly ungrateful, will be demanding of all your attention and likely won't stop drinking. He may steal from you and your mother, he may wreck your things when he's drunk, you'll be cleaning up after him. All your energy will go to him. You will probably be at your wits end very soon.

You may want to reconsider that decision. He's an adult, he's made his choices, now he has to live with the consequences.

Good luck.


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RE: Caring for aging mom and now DB with cirrohsis

wow, momj47, you must have had a bad experience with an alcoholic ;-). DB does get hateful sometime but for the most part he is a hermit and I have never seen or heard of him getting violent. He just stays to himself, pulls down the shades, turns out the lights and leaves the TV on hunting and fishing or National Geographic channel. He mostly wants to be left alone, he doesn't even join the family when we get together at holidays etc. That is why we didn't know he was sick for several weeks and if one of his son's had not come out to get the boat to go fishing and Dsis had not talked to him, we would not have known until he was in the hospital. He spends very little money on anything so has always had enough to by the booze. He might have a hard time paying rent sometimes and ask's mother for it but he wouldn't steal from her. Besides, he can't because she doesn't have any cash any more for she never goes anywhere that I don't take her.

I know his time is limited but I have to live with myself so I have to do everything that I can and the rest is up to the Lord's timing. If his family won't care for him, who will?

I just talked to him on the phone and he said he was feeling a little better and was not coming home tomorrow so that gives me a little more time to get things ready.

You all are the best and I thank you all. Carolyn


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RE: Caring for aging mom and now DB with cirrohsis

Actually, I've never had much personal experience (except my XFIL, who drank himself to death, alone, hundreds of miles away from his family). Mostly professional experience with alchoholics, old ones in a retirement community when I was the nursing supervisor for home health care. It was so sad to see how it destroyed families, and continued to do so for so many, many years. We had a large AA program for people in their 70's, 80's and 90's. But many of them just never stopped - like my FIL, until they killed themselves.

What a tragic waste of a life.

Good luck, and please remember to take good care of yourself, so you can take good care of your family.


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RE: Caring for aging mom and now DB with cirrohsis

One could argue that when they are in a terminal state that it's only kind to let them enjoy what they want to. Proverbs; 31-6 "Give strong drink to him who is perishing and wine to those in bitter distress;" God gave us alcohol and until it became an abused thing, it was a gift to the ill and dying. There is a point where it is useful as a pain killing drug.


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RE: That didn't sound right!!

I wasn't trying to have you go against what you feel is the right thing to do. I just felt that you would have so much less hassle to worry about if you didn't worry about his drinking. With your mother in her condition, you don't need more on your shoulders. I had a friend, dying of lung cancer, that refused to give up smoking. She said it was the only thing in her life that she enjoyed doing.


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RE: Caring for aging mom and now DB with cirrohsis

Thanks Logfrog, I knew what you meant. I am not really worring about his drinking because I can't do anything about that. What I am more concerned about just now is feeding him healthy meals and snacks that will be something that will taste good too and will eat and not let it sit and spoil and that would not make his condition worse.

He told me he had a good talk with the Dr. this morning and that had a plan. This Dr. also told him to stop smoking and he agreed. He said that he was going to try to eat and maybe do some fitness exercises etc. He seems to be taking charge of his treatment which I think is a good thing. He is more likely to stick with it if it is his plan.

I bought a used day bed today for $65.00 which is a good deal for the furniture. I also bought a floor air conditioner. It is something kind of new and was expensive but can be used anywhere I might need it, when he is not using it.

The bad knews is that mother is coughing blood from her lungs. She was so much better yesterday.


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RE: Caring for aging mom and now DB with cirrohsis

My brother also has cirrhosis of the liver and is living with me right now. He began a strong chemotherapy treatment for lymphoma a year ago. He finished chemo in October and in November we noticed his stomach began swelling. In January, he had to have a massive amount of fluid drawn. Doctors at the Mayo Clinic told him the chemo treatments caused his cirrhosis. He is in the late stages and has had a terrible time with the fluid retention....has had it drawn about 5 times since January. He is not a candidate for a transplant.

He came to me the first week in June and we went on a very strict low sodium diet. This diet has made a world of difference! He hasn't had to take but a few diuretics since the first of July. He had no appetite when he got here and weighed only 125 pounds. He is 6' 2' and usually weighs 190. He was so weak, he could barely cough. His doctors were sure his time was very near. I didn't think he'd live two weeks. He now weighs 147 and has not had fluid drained since May. His stomach is fairly flat now. The low-sodium diet has done this. He eats about 4 times per day.

He is also a diabetic which makes it really hard to find something he can eat. He can't take his normal diabetic medications because that makes his liver worse. The few things I'm able to fix for him include boiled chicken breasts, noodles, rice, mashed potatoes, and eggs which are all low in sodium. We add NO salt to anything. I also brown hamburger meat and add a little homemade BBQ sauce. He will eat maybe one sandwich a day. The bread I buy has 140 mg. sodium per slice. Cirrhosis patients need protein, but vegetable and poultry protein are much better than protein from animals. My brother doesn't like many vegetables but they are good for them. Fresh fruit is also a good food. Stay away from most canned and already prepared foods. My brother can't have more than 2,000 mg of sodium per day...we never get to that much anyway.

If you will go to this site, you will learn lots about this disease. Click on 'messages' and start reading. Everything I know, I learned at this site. You need to learn about the results of his ammonia levels getting too high. This can cause encephalopathy (sp) which causes confusion and even making the patient go into a coma. This liver failure site will tell you all about that. We battle the ammonia levels every week. He has to have blood tests every week.

I hope this helps a little. It has been extremely hard for me to care for my brother. You might need some help since you also have your mom.

My thoughts are with you.

Here is a link that might be useful: Liver Failure Support Group


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RE: Caring for aging mom and now DB with cirrohsis

Good advice above. Cirrhosis can be a very difficult thing. Do the salt restriction, high calorie, low protein diet. When the abdominal fluid resolves (ascites), the appetite may very well improve. Good luck with all this. You are smart to focus on what you can have an impact on. Your family is so fortunate to have you. Derry


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RE: Caring for aging mom and now DB with cirrohsis

Is your mother doing better today? When they cough up blood, it's scary!


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RE: Caring for aging mom and now DB with cirrohsis

oh, you poor thing...

1) prayer is good, and healing...but education is better.

2) the glycerine swabs only really taste good if you're comatose. I've found pectin a much more palatable humectant- to the point that I was making apple juice slushies to swish the swabs in for my dad.

3) Ensure is a marketting gimmick with only slightly more nutritional value than white bread. Dairy Queen Soft Serve and a scoop of protein supplement is better for you. as a person's system slows down, they have a harder and harder time absorbing nutrients, so feeding simple foods more often is the best bet.

smoothies made with yogurt that is marked as having 'live cultures' will re-invest the digestive system with the bacteria it needs TO digest food, and help guard against yeast infections (a problem in the elderly- thrush can kill a weakened person by discouraging swallowing)

the vegetable protien might do your mom some good as well- animal protien can only be broken down after the fibrous tissue is dealt with- and even when pureed, it's hard on an old system. but I found out that I could puree chili (beans, rice, some meat for flavor, and a block of tofu when dad wasn't looking) and thin it with salt-free stock.

your brother is going to be a drain on you like you wouldn't believe...and if he's going to live at all, you are going to have to be the parent he listens to.

1) the smoking and drinking have to go- if needed, take his wallet away from him.

2) exercise is one of the most important factors- if all he can do at first is do 5 pound curls, or walk for five minutes- then that's where he has to start.

3) nothing tastes good when you've burned out your taste buds with smokes and drinks- and nothing will for the first month. eating is now a responsiblity, not a pleasure (and yes,I know if he put things in that order, he wouldn't be IN this mess)

4) Milk Thistle is the big liver detox substance- followed by chlorophyl, parsley, celery, ginger, and citrus fruits...and in my opinion, the first four are nasty tasting...and are better off being done as shots, followed by a lemon-ginger chaser.

add ground flax seed to everything you feed him- stir it into that chili, add a teaspoon to the smoothies, it might even improve his mood- did they even bother warning you about the depression? no, likely not. depression is a secondary diagnosis in just about every chronic illness, and every substance abuse syndrome.

the more raw fruits and veggies you can sneak in to his body, the better... and treating yourself the same way will do YOU some good.

and the more use he makes himself around your house, the better he will feel about things- and the less time he will have to brood :)


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RE: Caring for aging mom and now DB with cirrohsis

What great, helpful info in this thread! :)


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RE: Caring for aging mom and now DB with cirrohsis

My goodness, what wonderful information. I have not been here in a while because I am having trouble getting online.

My mother died Wednesday morning just before 6:00 AM, DB came here from the hospital on Thursday and the funeral and reading of the will was on Friday. I am tired.

My brother IS more trouble than mothers was already. I know he does not mean to but I think he is acting like he is paying me to take care of me and can let me wait on him.

He seems to have made up his mind that he will not smoke or drink anymore. If/when he gets to feeling normal again, we will see if he will still feel that way.

We are going to have to sit down and talk about money in the next couple of days. I can't keep buying things for him without his helping a little bit. I am also having a hard time reminding him to put some clothes on. He is used to laying around in him underwear all the time. This afternoon my 14 year old (last Saturday) grand daughter came in while he was walking from his room to the den and saw him like that. He didn't seem to care but I know she doesn't see her dad do that and I don't like it either. I bought him some PJ pants but he doesn't like them very much but does wear them if he KNOWS someone is coming.

I have heard of the milkthistle but did not know if I should try to get some. I don't want to overtax his liver any more than I have to. He is mostly eating yogurt now and walked outside a few times for exerise.

I will check out the link in the morning because I am too tired tonight. Thank you all so much.


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RE: Caring for aging mom and now DB with cirrohsis

Dear Carolyn... May God comfort you in the loss of your precious mother and give you a much needed good night's rest... So much happening at one time! Good idea to work out some ground rules with your brother. He certainly should be helping you financially and wearing clothes. Would shorts be an alternative???


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RE: Caring for aging mom and now DB with cirrohsis

If he cuts out both smoking and drinking at the same time, he is going to have some tough times unless he is a most unusual person.. Get him to drink plents of orange juice and lemonade. The extra fluids seem to flush the nicotine out of his system faster. Both have Vitamine C, and that seems to help the addiction problems.


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RE: Caring for aging mom and now DB with cirrohsis

A good night sleep seems to be a thing of the past. DB has his own room with his own TV but he seems to want to be in the den on the couch to watch.

I live in an old, old house without central AC so we have window units. There is one in the den that has to cool my bedroom too but it blows toward the couch and there is really no where else to put it. DB is cold all the time and keeps the thermostate on 85. That makes my room about 90 or more. I can't sleep when it is that hot but he ALWAYS turns it.

I woke up this morning at 12:30 sweating and unable to sleep. I tried going to the kitchen and reading but I have to get some sleep so I told him (about 3:30)that I had to make it cooler. He said he was sorry and covered up and in a few minutes he went back to his room. The phone woke me at 6:30.

He has thrush and I have to remind him four times a day to swish and swallow his meds.

He wants to go to the Dr. this morning so I need to get busy but I do thank all of you for your advice and concern.


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RE: Caring for aging mom and now DB with cirrohsis

Carolyn
I stumbled on your story on this sight & I thought I could help. I to have liver cirrohsis since 2003. Food! It changes alot. What I mean is that 2 years ago I was about to eat things that I can't now. So lets see at first... I didn't eat much at all I got down to 95 lbs. then I started eating mostly because the meds were making me sick if I didn't. Then I always wanted hard candy ( thats ok if he craves candy,(sugar) ) And I was on a LOW PROTIEN - LOW SODIUM - LOW CARB diet,then as I was feeling better I once in a whild would have some fries or a very little steak, also I still can't eat a lot at one time I have to eat a lot of little meals or I get sick.When I eat something that is not good I get a white coat on my tongue & I don't feel to well.
It is best to eat fruit, veg, not to much dairy ( the soy milk is great )chicken or fish baked not fried. I like to drink lemon water, I have a hard time with soda's or caffein. sorry how every you spell it.I have some recipies the I can send you if you would like, and or any help I can give you. You take careof your self because if you are not well you can't help anyone else. about that message that said you should not trust your brother I disagree he needs support & love right now! then you can see were he goes with that! I send best wishes & prayers to your mother & your brother too. also if your brother would like someone to talk to .... God bless you are there to help them


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RE: Caring for aging mom and now DB with cirrohsis

Good morning Lena,

Thank you for your post, I will try to get him to read it. I guess I had better print it out so he can't read all the venting I did on former posts ;-).

Did the diuretics work for you? When he had the 3 liters drained off, he was hungry and ate much more but it is mostly back now. He eats almost nothing but fruit, apples generally. He ate a lot of yogurt at first but is tired of it now. I don't think he understands that eating is like medicine for him. He does try to drink Ensure several times a day but some days does not get even one down.

Since DD and I had already decided that we would cut down on salt, we don't use a lot of it but he does use more than he should.

He is on the laxative Lactalose now and it makes him sick a little because the dose it is two TABLESPOONS every day and it is really sweet but he is taking it. Did,do you have trouble with constipation?

He has stopped turning my AC up so goes back to his oven of a room when he gets cold, which is most of the time.

He started smoking again but still says that he does not even think about drinking, thank goodness. No one has smoked in my house in years. Anyone that visits goes outside and I have never asked them to. I need to start using the Hepa filter that we had for mother in his room because it really does help with odors and my whole house is starting to smell like cig. smoke.

By the way, mother died the day before he came home from the hospital.

For the most part, I leave him alone about eating and taking his meds because he gets mad when I mention it too much.

He also had the thrush mouth and has some med. he is supposed to swish and swallow three times a day but hardly ever does it more than twice. It is getting better though.

I have noticed that his mind seems to be clearer the longer he goes without drinking. Since he seems to be fixated on his bowel movements he doesn't seem to be having trouble with ammonia building up.

He never sleeps more than an hour or two at a time and roams the house all night which seems to be when he eats the most.

I would love to have some recipes, thank you.

This is getting pretty long so I will close now and I am so glad that you found this site. I have gotten some wonderful advice here.


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RE: Caring for aging mom and now DB with cirrohsis

I am very sorry to hear about your mom - but now she is in peace How are you taking everything? OK I hope.

The diuertics
Yes it did help me, at first I tool them every day, Now (2 years later) I only take them when I am swollen. You can tell if you take your shin & press on it with a couple fingers ( right next to the bone, in the middle) hold it for a couple seconds, let go and if there is a dent & it takes a couple seconds to level off. You have allot of water in you system, take your pills.
When I was prescribed the water pill (Bumetanine 1mg), the doctor also prescibed a pill that acts a loop to keep my potassium level up(water pills can lower your potassium) This pill was called Spironolactone 50mg.
So I was told to take them together.

The fruit is very good & don't worry if this is all you can eat, you body will tell you when you need something else. (sometimes this is all I eat)

The Lactalose- Yes it is BAD it make me sick too!
this is a laxative, but it also works with to fight the ammonia in the blood (which can cause memory loss)
I never did take it very much but I was prescribed a power drink (Cholestyramine 4mg Powder)Two timea a day & it helps me a lot better.

Constipation- Yes you have to always stay on top of that!! you are suppost to have 3 or 4 lose bowel movements a day.
If I get constipated The bile backs up into my blood & causes me to itch, BAD! I bleed from these lestions on my skin. Its really bad I had to take light treatments 3 time a week with UVB rays, This did help.

The AC - this is normal I did the same thing! Hes very sick.

Never thinks about drinking again - this is great so if you have to deal with his smoking so be it , One thing at a time.
When I ws in the hospital they told my mother I was not going to make it though the night, but then I did, but it seems like I have such a different out look on things, and I too said I would never drink again. And I still say that, matter of fact, I do not talerate drunks!!
ANyway I started smoking too, but now I am thinking that I am going to quite because I am in tune with my body, and smoking is only hurting it, PLUS I just found out it is a big factor on liver cirrohsis. and I think to myself if I stopped drinking over night I can stop smoking too!

What are some of the meds he takes? I have read & I take Ursodiol/Actigal 300mg 3x a day. this is a galstone med, but I have read a lot of people say this has helped there itching a lot.

Night walking - I do the same thing & I eat most then too. They gave me sleeping pills.

The thrush mouth, I get this every time I eat something that is not good for me.

Recipes - Yes I will type some and send them. should I type them in this or e-mail them to you?

OH! what is DB? What is your bothers name & how old is he? if you want you can let him ask me some stuff that is bothering him. that helps me a lot when I can talk to other people with the same. Can he use a computer?

Take care, talk to you soon


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RE: Caring for aging mom and now DB with cirrohsis

Hi Lena, his name is Henry and he will be 58 in November.
He has three perscriptions: Spironolactone, Lactulose and something to help him get through the withdrawals but he doesn't take them very often. He also has the patches to stop smoking but he would rather reach for the cigs. The Dr. told him to take a good vitamin and he got a perscription for an over the counter vit B but he almost never takes them. Two weeks ago the Dr. gave him a Vit B12 shot and it helped but he won't take the pills.

I don't know whether the Dr. didn't make it clear to him or if he is in denial, but he seems to think he is going to get well. He is not. If he does what he is supposed to and makes himself eat at least a bite or two every half hour or so, he may get better for a while but that is all.
The diuretics are not working at all that I can see but may be better than nothing.

He will look at his skinny arms and hanging skin and say something about how bad it looks and talk about how weak he is and still not make himself eat just a little.

He does not itch, thank goodness and he may not be quite as yellow as he was but it might look that way because I have not seen him in the sunlight.

His mind MIGHT be a little clearer because he has not had anything to drink in three weeks but he still cannot think straight. I can't seem to make his understand that he needs to get his 401K money out and pay his few bills and than the Dr. and hospital bills before he can even apply for Medicaid. He is only allowed up to $2,000. He only gets 500.00 month retirement check. His only bills, after he pays the last of his utilities, etc., is three credit cards and they add up to about $6,000.

Just send the recipes to my e-mail unless someone else here want's them.

I will as him if he wants to talk to you but I don't think he will. If he does, I will start a new thread for it.

You are too good to do this and thanks for listening.
Carolyn


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