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Caregivers Sharing thread #12

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Posted 6/5/2012 9:19 PM (GMT 0)
Since the last thread went to 4 pages, I am starting a new one.

Hugs,
Connie
Posted 6/6/2012 4:03 AM (GMT 0)
Thanks for starting a new thread Connie.

My dad had his pacemaker replaced today.  I was his ride, his "ears" (he is hard of hearing), and sat with him before and after the procedure.  Very routine and fast...but lots of waiting time.  It was emotionally a tough day for both he and I, as his procedure was in the same hospital that mom was in...just down the hall from the ICU where mom spent her last days.  Just hearing the beeping of the IV monitors made me want to scream.  When the nurses were wheeling dad down the hall to his procedure I told both of them to take good care of him...and then I burst into tears.  While waiting I saw the ER doctor that admitted mom and spent some time talking with him.  Anyway, glad that is behind us.

Otherwise, things are steady.  And I am grateful for that.

Angie-I have been thinking about you and sending you positive thoughts.

I hope that everyone is hanging in there and having a peaceful day.

Emma

Posted 6/6/2012 1:18 PM (GMT 0)
Hey Emma,

Hope today is a brighter day for you. Yesterday must have been very difficult for you and your dad. I know what you mean about the beeping. The ultrasound tech laughs at me because I know how to silence them. You know things aren't good when you are on a first name basis with people in more than one hospital. : (

Off to Lahey tomorrow for a consult with a hepatologist - finally. Hope he will have something good for us in the way of making Craig more comfortable. He does feel better since they have been doing the paracentesis, another 8.4 liters yesterday, but the infusion is the worst part. He has no veins left, and they had to stick him four times to get the IV in. There has to be a better way...

Marie
Posted 6/6/2012 2:31 PM (GMT 0)
Good morning Emma,

I can hear in your posts how much you are missing your Mom.

My own Mom passed away the year my son was born, 1976. He was 4 months old. He is now 36, so a long time has passed, but I tear up just reading your post...she meant a lot to me, as your Mom did to you. I feel so bad my Mom didn't see my children grow up....she was so excited to be a grandmother.

And so was your Mom...I'm sure she loved being part of your family as the children grew up. This will be a tough year...taking your Dad for his procedure must have been hard. I can't drive by the hospital where my Mom died...I always go a different way. And that was a long time ago. And first MOthers Day, her birthday, Thanksgiving, etc etc. You have been blessed with a wonderful Mom...and many here tell different, sad tales of estrangement or abuse. How lucky you are, and how lucky your children are to have had her in their lives all this time.

Hoping your Dad is doing well after his procedure.

Thinking good thoughts for you today.

Hugs,

Carol
Posted 6/8/2012 5:13 PM (GMT 0)
Finally met with a hepatologist at the Lahey Clinic yesterday and got some interesting and hopeful information. At least I feel good about things at this point.

The doctor was very thorough with all of the information that he had been sent from the oncologists and radiologist, etc. He told us that there is definitely a good possibilty that my husband can have a catheter put in instead of having to go back and forth to the hospital for theraputic paracentesis. The visiting nurse can help with that at first so that we are using good sterile procedures to ward off infection. He also said the albumin infusion is not necessary - relief for tired veins - yay!

He also told me that my husband's liver disease will not outpace the cancer. I did not expect to hear that at all. I don't know why it matters to me, I mean, dying is dying, right? But it does, and it was a gift to me to hear that. Because I can finally stop feeling bad about situations where my husband wants to have a drink. He can enjoy what time he has left and not have to listen to me harp on him about whether or not he should have a beer. It isn't a big green light to drink, by any means, but basically, it is the same as trying to make him eat. He has no appetite, and no matter how much I will it, or cook or try to stuff it down his throat, he is not going to suddenly get an appetite. So, I will be happy when he decides to eat, and happy when he doesn't drink, and the rest of the time, I will be happy to spend time with him. However much time that is.

I will be sad later....

Peace,

Marie

 

Post Edited (Mariel52) : 6/8/2012 1:27:48 PM (GMT-6)

Posted 6/8/2012 7:30 PM (GMT 0)
Marie, I'm glad you were able to meet with a hepatologist. However, it is my understanding that paracentesis should include albumin if the amount drained is considerable. When I had a once-only drain, I asked if I would get albumin and was told no, there was not enough fluid drawn to warrant that. It was 101 mL. If I recall, your husband's drainings have produced a lot of fluid.

Every time your hubby takes a drink, it damages his liver more. The cirrhosis and other problems will only increase with drinking. However, it's true that there is no sense in nagging him to stop. Liver cancer is generally very aggressive, so it's true that it would probably take him out a lot sooner than his liver disease. However, if he didn't drink he could halt the progression of cirrhosis. Has he decided against transplant? He would need 6 months of continuous, documented sobriety to be considered.

Hugs,
Connie
Posted 6/8/2012 7:51 PM (GMT 0)
MarieL52,
Thinking of you as I read your last post. So sorry about the constant paracentesis. What misery for him. Glad (maybe) they can do a catheter. My hubby hated hated hated the one paracentesis he had and we decided not to do the cath and have been able to control the fluid with meds,,,,so far.

I get what you mean when you say you try to cook stuff he wants or stuff food down his throat...this is one issue we are now having with the nursing home...They harp on him to eat and it is making him crazy. As you may have read, my hubby has choosen not to get evaluated for a transplant, so I am kinda in your shoes. I work to be happy when I am wih him and told the nursing home to quit bothering him about eating (I don't think they are allowed to let him not eat though.) I also am trying to be happy when he does want to eat . I like what you said about being sad later....somedays I don't know how to put the sadness off though.

Last night he called from the nursing home at 9:00PM and said the nurse wouldn't give him pain pills or a sandwich...so..working on the being happy part..I packed a picnic lunch, my clothes for work the next morning, the dog, dog bed and headed to the B & B (nursing home) to stay the night. Sure enough when I got there and asked about his pain pills, the nurse did mention that she didn't give him any and he had asked at 6:00 (it is as needed tramadol) and about the snack she said, well he didn't come out of his room for dinner at 6:00, so he wasn't going to get a sandwich (then she said, "just like my kids..no dinner..no snack.)

Darn I was mad as he is not some little kid, but a man that deserves some respect for a life well lived...but ... trying to be upbeat...I asked her to give him the tramadol and unpacked our picnic in his room, put on my jammies smurf   and we ate health cereal yogert, flaxseed, coconut flakes, bananas...the stuff he was used to at home. I reassured him that he was right, she wasn't going to give him his meds or sandwich and to just call me when he has a problem. (Aside:  Sometimes he can figure out how to call me and sometimes not...there does not seem to be a rhyme or reason to it.   (Last month I made arrangements for the kitchen to make him a sandwich for night...so she didn't have to make one,,just get one out with his name on it.)

We did have a nice night watching animal planet..although he was up about 12 times..trying to BM...Dog was really happy in the airconditioning with the fan blowing on him all night. (The only only way I was able to be civil to this nurse, was that I had had a 5 hour nap in the afternoon, so was able to blow it off and take care of him like he deserves.  I know that she has her own personal problems.) Some days I really question whether I have done the best for him by taking him to the B&B. Guilt guilt guilt. Well,,,enough of this.

(On the positive side,,I am working with the activities director to help arrange a fishing trip for B& B residents soon. Should be challenging but fun. I am trying to get them to get the residents plant a garden and will help get it started.)

Isn't it Ironic that they want him to eat, but when he asks for sandwich,,,that is made and ready for him...no he can't have it.  Better quite writing, I am losing my "Happy". :-)
Angie1953

From your Mariel52 and my Angie1953...I would guess we are the same age..about 58. How old is your hubby and how long have you been together? Thinking of you today especially because you sound so upbeat...I know how hard that is to keep up sometimes.

Post Edited (Angie1953) : 6/8/2012 1:59:28 PM (GMT-6)

Posted 6/8/2012 8:36 PM (GMT 0)
Angie...GASP

        "well he didn't come out of his room for dinner at 6:00, so he wasn't going to get a sandwich..."

You take a guy with HE and you are going to use behavior modification when he can't remember who is wife is some days?????

I'd be crazy with this.

Good you live close enough to bring a snack and the dog! And that you are really good at not blowing your TOP.

I'm sorry this is so rough.

Hugs,

Carol

Posted 6/8/2012 9:19 PM (GMT 0)
Mariel and Angie,

I am glad to hear that you are both trying to find your happy and be there for the moments that you can.

But I am sorry about the difficulties your hubbys are having.

Mariel-I agree with Connie about the alcohol. I understand the no need to quit since there are other issues, but it just seems to be adding fuel to the fire.

Angie-That is crazy that there is a sandwich with his name on it and he can't have it because he wasn't out of his room...makes no sense. It is so good that you were able to set that crazy aside and pack a picnic. A bit of happy.

Emma
Posted 6/9/2012 2:33 AM (GMT 0)
Connie,

As far as the drinking goes, he does pretty well most of the time. He doesn't have liver cancer, he had esophageal cancer which has now spread throughout his abdomen, with the most recent growths pressing on his lungs, collapsing the upper left lobe. It is terminal, and he would never be eligible for a transplant. Nor would he want one at this stage. The hepatologist said that the albumen works to protect kidney function, and for him, because of his other underlying conditions, this is not necessary. We are talking palliative care here, now and that is the difference.

Angie,

You have made me say it, 52 is my age, not my birth year. Craig is only 50. :( We have been married for 27 years and have 2 children, a daughter 24 who just got married to a great guy, and a son, 24, who is still finding his path. This illness has given us all a gift of time with each other, and I am thankful for that. A lot of healing has taken place over the last two years.

I am also thankful, that although my husband is tired, weak and frustrated, he has no HE, and so we are always able to communicate with each other. He still tries to be very independent, but is coming to realize that this is going to change. He was the one who was always there for everyone else, and now, he must accept help from others. He is getting there. The juggling act of work and home is very difficult, and I can't imagine what you are going through right now, with the B&B. I don't know if that is something I will have to face eventually.

Emma,

I was more surprised than anyone when the hepatologist said not to worry about the liver disease so much now. I know this is an anathema to anyone battling this with hope of survival. I do not mean to suggest in anyway that drinking with liver disease is okay. But a load was shifted off of my shoulders in that I do not have to sit in judgement that he had a beer at his daughters wedding.

Carol, Sandi, David, A. Ziffle, and all of you,

I am so thankful I found this forum, I can't tell you how much it has helped me. But I also feel a little out of place because when I came here, I knew that my love was dying from cancer. There is no "healing well" for us. At least not in the sense of beating the disease. I am not sure what I am trying to say here. I have learned so much from your experiences. I think I will "heal well" eventually. Someday, I will be able to sort this all out and know that we gave it the best we could. Dying well, so to speak.

Rambling now, sorry.

Marie
Posted 6/9/2012 3:07 AM (GMT 0)
Marie,

This is a brave, lovely, understanding post. I so much respect your acceptance...dying well...nicely put.

All of us will face this at one point...one of us will go first, of what, we may not know.

Rambling is good too.

Special hugs, may your journey be peaceful,

Carol
Posted 6/9/2012 3:30 AM (GMT 0)
Marie, thanks for refreshing my memory, which is not the best these days. Terminal cancer can change a lot of things. I've been sober for 25+ years, but have said that I might ask for a glass of champagne on my death bed.

I'm happy to hear that we have helped you and hope we can continue to do so.

Hugs,
Connie
Posted 6/9/2012 4:09 AM (GMT 0)
Marie,

When my mom was in her last days, and we were calling relatives to let them know her time was drawing near, one of my aunts told me that "it's an appointment we are all going to have to keep." With tears in my eyes, I of course could only agree with this statement, and it did make me smile a little bit.

You are brave and your husband and family will appreciate that. Venting here is good, it will give you a chance to let down the brave face, if only for a little while.

Prayers for you and your family.

Emma
Posted 6/13/2012 4:52 AM (GMT 0)
Bumping for new members.
Posted 6/13/2012 6:11 AM (GMT 0)
I took some time off from visiting the nursing home (B & B) to catch up on things at home and work and when I went to visit hubby yesterday, he really hadn't noticed that I hadn't been there for 3 days.  He was so happy that I brought him a jar of giant pickles...although it was breakfast, he offered them all around to all residents and staff.

Had breakfast with him and hung out, then had lunch with him.  In between while he was napping I talked with the activities director about helping her with a garden for the residents.  They are mostly retired farm folks so they want a garden.  Hopefully I can help get it started and residents can then wheel out to the patio and care for it.  It will give me a chance to be around him more (the garden can be part of my work..community organizing).

After lunch I asked hubby if he wanted to come home for the afternoon with me and he looked at me funny and said ...well we are home...what do you mean.  Upshot is that he doesn't recall us having a home somewhere besides the B & B, which was hard to realize and accept.  I just skipped it and went on to something else.

 I lose a little more of him everyday and perhaps that is a part of this process of parting.  Somehow, when I vowed "til death do us part", I assumed it would be a swift and sudden parting.  With all his work with dangerous animals, I really did assume that would account for our parting....which is what happened to most of his friends.  I was ready for that and knew that when we married that was a possibility and I was okay with it.  This is so so different, where I lose him a tiny bit at a time and he doesn't even realize it (most of the time).  It is so different than what I was prepared for.  Instead of one swift stab to the heart, it is like a knife plunged into my heart over and over. 

Guess, I am feeling sorry for myself tonight.  rolleyes   

But there are a number of positive things...his pain is under control, he is happy (although full of anti-depressants) and seems to like the B &B. 

I wonder how other caregivers are doing.  Natasha?  Emma, thinking of you and lighting a candle for you tonight. Connie, I read about your day...man, you have been through so much.   It may be a candle array night, with a little Billy Holiday music.  Night all. smurf

Angie1953

 

Posted 6/13/2012 7:57 AM (GMT 0)
(((((((((Angie))))))) You have handled the whole "slow parting" so beautifully. I'm sure there are times you cry and maybe even scream, and certainly vent, but you are coping with the situation better than most would.

Be gentle with yourself. Get some rest.

Hugs,
Connie
Posted 6/13/2012 3:39 PM (GMT 0)
Angie,

I completely agree with Connie. I could not be as brave as you.

Hugs for you.

Emma
Posted 6/14/2012 1:54 AM (GMT 0)
Thanks for the support.  As I put anti-itch lotion on him today, I noted that he is developing hard muscles in his calves from all the walking.  He does have this urge to survive, just not in the direction of a transplant, I guess.  He sees so many of the residents in wheel chairs and doesn't want to be restricted like that so he is walking a lot.  Round and around inside the nursing home.  He saw a red wagon today (that staff uses to tote kitchen boxes back and forth) and couldn't resist...he took it for a spin...got in it and pushed it with one foot down the hall and around the corner and got to the other wing before someone caught him.  What a card !!  He does love to entertain.

Meanwhile...on the outside world..I am waiting for my calf to be born...anyday now.  Helping my 85 year old Mom plant flowers..we have so much fun hanging out together..Don't know what I would do without her...AND this forum.  Thanks so much for the support.  Some days I feel like I'm doing okay and the next like I fall far short of the wife and person I want to be.  I'm trying to be gentle on myself. Thinking of you all tonight and thought I'd play some Leon Redbone music. (Seems like the music helps alot.)

Angie1953

Posted 6/15/2012 4:37 AM (GMT 0)
Today Hubby fell at B & B. Bruised knees. He fell out of bed..just rolled out I guess. He didn't want to go to Doc, so nurse patched up his knees with colored band aids.

Last night he went with me to check and see if our cow had her calf at midnight and at 1:00 AM when we stopped at the only gas station open in town...it had just been robbed at gunpoint..police were just leaving. Small town...so armed robbery was shocking...weapon was a bee bee gun (NO KiDDING). As clerk said..still was scary..but he said he looked at gun and thought to himself..."Does this guy actually have a bee bee gun." No one hurt. No one caught yet.

So my hubby had quite a story to tell, when we returned to B & B at 1:30 AM. They locked all the doors and I stayed at the the B & B with hubby all night. (Was actually nice to have an adventure without it being related to hubby's illness.)

Hope all you caregivers and loved ones are doing well this evening. Natasha..how are you and the kids doing?
Angie1953
Posted 6/15/2012 4:50 AM (GMT 0)
Angie, lots of times holdups are done with toy guns. And don't knock BB guns. I was shot in the back of the head and on my lower lip by the kid next door when I was about 6. Didn't even know I'd been shot in the head until I had my first MRI of the head (or attempted MRI) about 15 yrs. ago, which came out completely black. X-rays showed three BB pellets in the lower part of my skull in the back.

Your hubby seemed to be having a good day.

Has the calf been born yet?

Hugs,
Connie
Posted 6/15/2012 7:13 AM (GMT 0)
No calf yet..yes he had a good day. We had fun together.

Yeah, the bee bee gun did do the trick...the cashier handed over the money to the robber.
Angie1953
Posted 6/15/2012 5:32 PM (GMT 0)
Hello Angie,

Falls are scarey, I am always worried Craig is going to fall. And sometimes he does. Now he can break bones without even falling! He fractured his upper humerus on Tuesday by lifting up a gallon of antifreeze - :(

I know what you mean about adventures! Glad that your timing was such that you were not there sooner.  Hope your calf arrives safely.

Connie,

Good Lord! You should write a book about your adventures! How can you get shot in the head and not know it? Did the lip just hurt that much more that you didn't notice it? Oh my! My brother got hit between the eyes with a dart once, bled like a son of a gun. Amazing that we survived our childhoods as well as we did! LOL

Marie

Posted 6/15/2012 6:45 PM (GMT 0)
Marie, I just didn't remember it, except for the lip...which probably hurt more and also left a small red mark on my lower lip. It wasn't until the x-ray was done and they said it was BB pellets that it jiggled my memory. It doesn't hurt at all. Thank goodness, since I'm already hurting pretty much everywhere else!

Hugs,
Connie
Posted 6/16/2012 12:23 AM (GMT 0)
My Mom was scammed out of $$ yesterday with the old "Grandma, I'm in jail in Italy, send money to my attorney" ploy. Can't believe my Mom fell for it TWICE. Yesterday and the day before...both times sent money Western Union...and didn't tell us...because alleged Granddaughter told her "DONT TELL ANYONE." Today when I called her this morning she said she was on the way to the bank AGAIN to send $$...What I said. Don't do anything.

Called my brother and his 22 year old daughter was safe in Colorado,,,not in jail in Italy. darn!! Can't believe my Mom fell for this. She feels bad..She said, "Guess I'm just stupid." "I really thought it was her voice." She is napping it off. I went to police station and told them, but they won't be able to recover the $$. :( Feel bad for my Mom.. she was so happy to think Granddaughter called her for help.

Will stop and see hubby and then out to check on cow. She looks really uncomfortable..maybe calf tonight. I'll see if hubby is up for camping out to watch for calf. Hope all caregivers are doing okay today, and their loved ones are getting by.
Angie1953
Posted 6/19/2012 11:10 PM (GMT 0)
Angie,

Did your calf come yet? Must have by now. Hope your week is going ok.

Having a hard time today. Hospice is coming tomorrow. I know it will be good, but it feels like turning a corner where you can't back up once you head down that road. I just want him to be out of pain. But there's no medicine for mine.

Marie

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