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Caregivers Sharing thread # 14

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Posted 9/16/2012 6:12 PM (GMT 0)
Time for a new thread!
Posted 9/17/2012 3:45 AM (GMT 0)
Hi all,
These past few weeks have been very eventful for our family. My dad, who has been sick but stable with non alcoholic cirrhosis for years now, suddenly worsened and we are battling HE daily now. He has been in the hospital twice in 3 weeks. The good news in all of this is that we have found out that his MELD score has gone from a 15 in June to 20 and he has been put on the transplant list. Now we just have to try to keep him stable and the HE under control as much as possible. So worried about him. And feeling sorry for my mom who also is on the receiving end of his anger and meanness. (which is not like him at all!)
Posted 9/17/2012 4:18 PM (GMT 0)
Hello everyone,

Just a quick note to let you know I'm doing okay, just trying to adjust to Janie not being here.

Yesterday was a sad day for our family as it marked exactly one month since she passed away. Her grand-daughter put a dozen of her favorite long stemmed red and white roses on her grave site. We all visited, cried and prayed for her and our family. We are a very close-knit family and she was a big part of our lives. It's really hard now with her gone. I know that time tends to heal all wounds, but this is really tough.

Being retired I know I need to find somethime to do, but my mind is still in a fog as to what that might be. I'm just taking it day by day trying to keep busy. I know that time tends to heal all wounds, but she is really missed. After spending the better part of four years taking care of her 24/7, I'm now fighting boredom and loneliness.

Wishing all of you the best, and hope you have a good week.

Charlie

 

Posted 9/17/2012 4:30 PM (GMT 0)
Charlie, if you are up to it you might want to check with a hospital about being a volunteer "sitter" to those who have no family, or to give family a break from the bedside vigil.

Jules, it's good that your dad is on the transplant list. Waiting is very stressful, though. Just make sure you have your cell phone with you at all times and try to "let it go." That call will come when you least expect it.

Hugs,
Connie
Posted 9/20/2012 12:52 AM (GMT 0)
Connie, you are so right. It is so incredibly hard to wait. Trying to be patient. But we're feeling constantly on edge waiting for the shoe to drop.
Posted 9/20/2012 4:26 PM (GMT 0)
@Jules,

Do you know how to use the UNOS data base to see what the wait times are for a MELD of 20 at your center?  If you are interested, or need help with that, you can send an off line email to me. It is over on the left...by the little mail envelope.

Carol

Posted 10/6/2012 12:42 AM (GMT 0)
Bumping for newbies.
Posted 10/6/2012 10:59 PM (GMT 0)
My hubby is still holding his own here at home.  He is getting a bit of swelling in his feet today, so taking lasix and putting his feet up.  It is so good to have his mind back.  He struggles with being tired if he is up doing something for a hour or two.  But takes a nap and he is back up again. 

Snowed here today and we are headed out to feed.  He has a burning desire to live life to it's fullest now.  Saw our first bluejay the other morning, as he got up in the night and put birdseed all over our deck, so we had flocks to watch from our window.  Was thoughtful of him.

He has a sore on his foot from too tight shoes.. Darn..we are trying to get it healed up.  Awaiting a call back from a job prospect, as I need to go back to work to feed us and keep us warm this winter.  Thinking of all of the exhausted caregivers  and their ill loved ones and sending them strength today. 

Angie1953

Posted 10/7/2012 1:28 AM (GMT 0)
Angie, does he have any socks from the hospital? The ones with slip free soles? I suggest he wear those or some roomy, comfy slippers while in the house.

Hugs,
Connie
Posted 10/7/2012 11:09 PM (GMT 0)
Angie-happy to hear that things are still going well with hubby.  The flock of birds feeding sounds like it was cool to see.

Yesterday was 6 months since my mom passed.  I can't believe that it has been that long.  It seems like it was just a month or two ago.  I miss her so much every single day.  My dad is doing well, and that makes it easier for me.

I am doing well.  So is Dougie.  He went out of town last week for 4 days to visit his 36yo son and his family.  I really enjoyed the time alone.  I felt like I could really focus on myself.  Especially coming off of my solid one month of work with only 2 days off.  I rested, ate what I wanted, watched tv shows I wanted, all the good stuff.  Didn't go see friends...just took care of me.  It was nice.  I would usually worry about him and wonder if he was drinking...but I am learning in Al Anon that there is nothing I can do about it, if that's what he chooses to do.  I don't think he did...his son is 3 years sober and an AA member...but I don't know, because I didn't even ask.  That is new behavior for me!

Hope everyone is enjoying a nice fall weekend.

Emma

 

Posted 10/8/2012 12:43 AM (GMT 0)
"his son is 3 years sober and an AA member"

Emma, then you can pretty much know that he didn't drink. wink

I am so glad that you are learning to take care of yourself, without feeling guilty. I know when I was married, I always enjoyed time by myself.

Hugs,
Connie
Posted 10/8/2012 7:28 PM (GMT 0)
Bumping for newbies.
Posted 10/12/2012 12:45 AM (GMT 0)
Hey Angie,

Thinking of you as I stack the last cord of wood for the winter. That was Craig's job, so of course it was stupidly emotional for me. How can it be that I miss arguing with him over holding his drink for him so he wouldn't spill it all over himself.

The leaves are in all their glory this week, and compelling us to get ready for the winter. I know how to do it. It has been a ritual for years.... but this year I do it alone and I am moving through the chores slowly and deliberately.... and I feel close to him sometimes, and other times so far....

I am so happy that your hubby is there mentally now, and that you can enjoy his company again.

Peace to all of you,

marie
Posted 10/12/2012 3:49 AM (GMT 0)
Marie,

I am glad that you are feeling close to Craig when doing things that you used to do together.  My mom used to root and grow violets from leaf clippings and I have two going right now.  Every time I see them, or water them, I smile and think of Mom.  One is really growing, the other is still a single leaf...I am waiting (hoping) to see some other leaves pop through the soil.  When the first one started growing, I really felt close to my mom.  Felt like she was there with me.

I hope you are having a peaceful evening.

Hugs to you.

Emma

Posted 10/12/2012 4:02 AM (GMT 0)
yeah  I understand about the mean part. My husband has hepc and cirosis Stage 4. His amonia levels are very hard to get and stay down. This makes him DR jekel and Mr hyde. Never know what he will be like tomorrow. Lately he screams at everyone. He has been i n hospital since Labor Day. He had major surgery in August and it has been very difficult to get him over it. nono Be careful to handle the person you are taking care of with kid gloves. He gets hostile over the little things. I'm hoping when he finally gets strong enough he can come home instead of residental care. He is very hard to take care of right now. I have no help from anyone. I have a disability and unable to be lifting him . He has had to learn all of his motor skills all over again.
Posted 10/12/2012 4:44 AM (GMT 0)
Hi, Crossfire, and welcome to the forum! Is your husband on Lactulose? Perhaps you already know that the mood changes and nastiness are from elevated ammonia levels in his brain. Lactulose gets rid of the ammonia via BMs. Sometimes another drug, Xifaxan, is added. This helps greatly. It is expensive, so insurance doesn't like to pay for it. If this is the case, then the manufacturer will provide it at no cost. A link to them (I think it's Merck) is in the Hepatitis Resources folder, near the end of the info.

After I had a liver transplant last Nov., they had to open me up again in March. Following that surgery, I've had a multitude of problems and it's been a struggle to get better. After 7 mos., my leg ulcers are finally nearly healed. Actually, one is healed and the other is almost healed. I had extreme lower extremity edema, along with blood and water blisters on my ankles and half-way up my rt. shin. I have hep C and was absolutely wiped out with these additional problems. I'm finally getting better. Hopefully, your husband will also.

Since you are new, I suggest that you start a new topic on the main page and introduce yourself to the others here, along with your situation. And check out the Hepatitis Resources folder for a ton of info. The Caregivers thread is also a great one for you to participate in, so I'm glad you found it.

Hugs,
Connie
Posted 10/12/2012 8:48 PM (GMT 0)
Connie - thanks for bumping.

I went to a physical rehab appt with my mom yesterday - she looks so terribly bad. it's the worst she's ever looked - jaundice, glassy eyed, 80lbs-ish, bald spot on the back of her head, nervous twitch if you will - she keep messing with her face, pants, etc... itching her stomach, out of it mentally, can't see distances, writes worse than my 6-year-old. Super sad.

She was able to get up and walk, but very slow and straight legged. And in the middle of doing an exercise, she would get very confused.

She also has a cough, but it's not a cough associated with a cold, or at least I don't think so. Somehow she's convinced her doctor that it is and he's prescribed her cough medicine. She refilled it on 10/4 and was already out of it. She's going to her intern doctor on Monday and they said something about a chest x-ray. This cough could all be linked, right?

She's very iritable and very mean. Which the mean part is not necessarily any diferent. Just don't know how long I can see her like this...
Posted 10/12/2012 9:08 PM (GMT 0)
So sad, to watch our loved ones fail.

But with Alcoholic Liver Disease ,this is pretty much what happens. 

I wonder if she is taking blood pressure medicine.  There is a family of drugs that all cause an annoying dry cough 24/7.  Mike had one that kept him up half the night. Since Mike had a transplant and went to a lot of trouble to get sober, he can't take any cough syrup with alcohol and he stays away from nacotic drugs...so no codeine cough syrup either.  Changing the Ace Inhibitor (I think, but I'm not 100% sure of the class that caused the problem...specifically, lisinopril in his case) did the trick.  His bp has not been well monitored since as the stuff worked wonders. But the cough was horrible.

My best to you, and your Mom...so sad.

Carol

 

Posted 10/12/2012 10:01 PM (GMT 0)
I agree with ML that the cough is likely from one of her medications. Hope she wasn't given a refill of the cough med, as it likely contains either alcohol or codeine. If it's not a productive cough and she wants a cough suppressant, she can try OTC cough medicine for children (Triaminic?) that doesn't contain alcohol or addictive drugs.

Hugs,
Connie
Posted 10/13/2012 5:37 AM (GMT 0)
Connie,
Hubby does have the slipper socks from hospital, and is now wearing them. Thx ..they were just laying in his drawer. Also, has diabetic socks (well...socks for diabetics) and wears them with his shoes now.

Marie..we too are getting ready for winter. Hauled away a bunch of metal to the recycling center last week. Your cabin sounds heavenly. Glad you were able to get up there.

Today was very hard. As finances get tougher, we struggle with that (I'm sure many do.) and seem to have a lot of disagreements, but I'm the only one who does anything about it. He just complains and wants someone to "come up with $$", which is me. I explain that I quit work to take care of him and am just now able to return, but they haven't called me in to start yet. But...that goes right over his head.

I really don't know how long I can do this...waiting and waiting, basically for him to die. It sounds so horrible, but that is what we are doing...both of us. Wish we had a better outlook, but today was just very painful for us both. I am a bit down this evening, so better end this. The future just seems so hopeless.
Angie1953
Posted 10/13/2012 6:41 PM (GMT 0)
((((((Angie)))))) It has been a long, difficult journey. I don't know how you have any energy left at all, or have not had a nervous breakdown. You are a strong lady and have done what you needed to do all along. With financial problems, that's another stressor. Are you able to contact your employer and ask about a return date? If you don't speak up, nobody will know that you are having a difficult time paying your bills. Here in FL, LIHEAP will pay your bill once a year if you are in danger of having your electricity turned off (most have electric heat.) I've never had to ask for their help, but my daughter and grown g'daughter have. If you have credit card debt, give them a call and ask that they give you a lower interest rate or lower minimum payment. You might also qualify for food stamps and/or a free cell phone (in FL, the companies are Safe Link and Assurance Wireless.)

There is help available, but if you've never needed it then you will have to do some searching for programs that will help you. You've worked and payed taxes, so it makes sense that in your time of need you should be able to get some assistance. I know that you've mentioned in the past that hubby has back taxes that he didn't pay. What is that situation now? You might want to try asking for help under your name only, if he still owes taxes.

Hugs,
Connie
Posted 10/13/2012 8:02 PM (GMT 0)
Connie,
I worked under a state grant that has ended in August. Up until August, the Board let me work part-time, so I could care for hubby and so the grant would last longer for me.

So now am looking for work, and supposedly will be able to work as a community service provider for families is distress. See the irony in that!! But seems to be taking forever for them to get the criminal check back and driver's licence check, etc. Thought I would be to work by Oct 1, but doesn't look that way. I am just about at wits end and when I try to talk to hubby, he huffs and, "I'll go back to work." But he can't and no one in the circus will hire him, they know he is ill and the work is hard, long days and tedious. And he would have to travel. I've tried to get him to contact some of the retraining programs, but he just wants to work with his buddies in the circus...and they won't hire him either, cause they know he can't do the work. aaaaahhhhh. He is just in lala land, once again. (but..he is trying...doing things around the house.)
Rough day again today. I think I did have a break down last night...is that when you just curl up in a ball on the floor and sob for an hour or so?

Thanks for the ideas. I keep thinking things will get better...then I remind myself they already did get better, but it's still such a struggle.

Guess I am feeling sorry for myself yesterday and today. I think it's the "no hope for the future thing that gets me down. I don't see a better life for us, only harder.
Hope everyone else is doing better and no emgercies over the weekend.
Angie1953
Posted 10/14/2012 3:16 AM (GMT 0)
Angie, I feel your pain . . about the job/cash flow. After returning from PA, I went back to work @ the restaurant, and I must have been in my own little world before I left ,because the people I had to work with were the laziest, back stabbing people I had ever seen. One of the servers, who thought she was a manager actually threw a plate of hot food in the window that almost hit me comin out the other side . . I quit of course. A great paying job was supposed to start in July . .still hasn't. We've been waiting for compesnation from the VA for me taking care of my husband (much cheaper than a nurse or caregiver) and we found out last week we were denied!! We filed for bankruptcy, and they think we are lying about our assetts because Google shows a $30,000. boat in our driveway . . it was repo's in Jan 2012 . . On a brighter note, I am starting a temp position @ the Supervisor of Elections Office . . and the job that was supposed to start in July is anticipated starting a week after election day!!
My husband was diagnosed with Polymalgea Rheumatic and since he's been taking these meds he's had a spike in his sugar . . something we have not had a problem with since he got of the prednisone . . So now its back to checking bloodsugar every couple hours and lots of insulin shots . . it was clear up to 469 on 10/9 . . scared the crap out of me!! 4 of his Dr's are on vacation, including the one that prescriped the medication . .
I think of you and what you have been going thru and thank God for all his blessings. Stay strong, and I'll say a special prayer for you tonight for some added strenght and a smile!!

Debbie
Posted 10/14/2012 3:09 PM (GMT 0)
Debbie, I would write to the VA about the compensation, to let them know you haven't had the boat since Jan.

It's polymyalgia rheumatica. wink

Hugs,
Connie
Posted 10/15/2012 1:50 AM (GMT 0)
Angie,

I have had you on my heart for days now. I tried to write the other day but just couldn't. I know what you are going through. And it is very tough.

I do not think that it is a breakdown when "you just curl up in a ball on the floor and sob for an hour or so?" I think that is when you just realize that you have no control over things, and you just have to ride it out.

But I don't have any real answers, either. I wish I did. As hard as those days were, I want them back....

I wish you the best day ever tomorrow. Find some joy in it somewhere, cause sometimes, that is all you get.

Love,

Marie
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