Is it hard for you to treat your spouse like "normal"?

[Sara]

Ever since the dialysis stuff started, it's been really hard for me to insist that Joe do his share around the house.  I feel guilty, because it's like, what if he dies?  Should he spend his remaining days cleaning the bathroom, or whatever?  And I've let him get away with some really frivolous purchases that if he were not sick I probably would have fought harder to avoid.  I know that professionals say you should try to keep things as normal as possible, but I've been having trouble doing that.  Is anyone else in the same boat?

[deej]

There are some days when I just go out and "blow a wad" thinking I´m going to die soon anyway. Then I usually regret it. I try to live as normally as possible but that little voice in the back of my head is always  saying "live a little - you don´t have that much time left." My family acts as if nothing is wrong. Sometimes I ask for a little help but they kind of ignore me. I guess it´s their way of dealing with the problem  . Your husband is lucky. I wish somebody would not make me clean the bathroom! But sometimes I feel like crap and don´t have the energy to clean anything.

[goofynina]

you know sara,  being on the other end and being the sick one.  I too expect to be pampered because i am "sick"  and i just want to be.  Our lives are going through something we or anyone can ever expect and sometimes we do things to make US feel better.  BUT,  i still believe in doing what i can do, cooking, cleaning what i can, when i can, laundry, you name it, i will eventually have to do it.  Hubby works too damn hard so it doesnt bother me, as long as he doesnt bother me and start telling me what to do and when to do it (unless he is out of clean chonies) lol .  Joe should be doing some things still, especially now that he is sick.   If he does do it, it may take some time.  The whole not having any energy thing is very common so give him some sympathy BUT NOT ALOT cuz then he will eat it up and get too spoiled, lol.  And about these purchases,  hmmmm, i dont know about at this point and time, i think i would strangle my hubby if he made any purchases without discussing them with me first.  Should be a mutual decision.  Good Luck and let us know how your doing with this, k,   

[Epoman]

Well here is my take on the situation, as you know I am the one who is sick or as I like to call it "dying"  but my son and I do as much as we can for my wife, his mother. She is the bread winner and she goes to college. WE do all the laundry, cleaning, and I pay ALL the bills, she does not have to worry about any of that. Plus we eat out a lot so, she rarely cooks. I am even training my son to be my NxStage partner, he is learning to set up my machine and everything involved with the treatment. I always have the house all clean when my wife comes home. But It does help I have a wonderful son who works for his very expensive toys like his PSP, IPOD, DS, so on and so on.

And my wife is great when it comes to me wanting something, she never tells me no, in fact she likes it when I treat myself, like right now I am sitting in front of my new 20" Dell Ultrabright Digital LCD. 

[livecam]

I think it wasn't hard for her to treat me pretty much normally when I was sick.  In some ways I took care of things around the house better when I was on dialysis than I do now.  We both always worked but she went the extra distance for me by bringing dinner down after a 10 hour day and a 90 mile commute and being understanding when it came to my limitations as far as being on the dialysis tether and what that would allow us to do.  She was with me every step of the way and in fact forced me to go to the Dr. one day before I started emergency dialysis which was a day when I happened to be very close to death according to the treating physicians. She was with me in the hospital that day, with me for the transplant evaluation, and with me the day we beat feet to San Diego for the big event.  Without her support, I wouldn't be here to post today, I would have been gone 7  1/2 years ago.

[angieskidney]

you all are so lucky!

I hope this isn't off topic but it is a reply to what this thread is about.

When I first lost my transplant I was living with my ex-boyfriend Jay who was a truck driver and only came home to sleep or eat or jump on his computer or else go out to strip bars with his best friend. I had to give up my 9 year job because I couldn't do the 12-hr shifts anymore since I said I didn't want HD but wanted to be back on PD like I was when I was 16. But that meant CAPD 4 times a day until I could be trained to do the nocturnal CCPD.

My hemoglobin dropped extremely low (so low the nurse said that she was surprised I ever got out of bed much less tried to still go to work) and I asked my boyfriend to go with me to the store which was only a block away. He got mad at me calling me lazy. We eventually broke up because he was mad that I was not "independent" like I used to be...

[sandman]

Every time I go to visit with Angie, she seems so perky and happy that I sometimes forget that she doesn't have the normal energy level as a healty person her age.  Then when I see her get worn out just by walking down the stairs, I am quickly reminded of just how tired and weak she really is.  I always want to do so much for her but she is about as stuborn as I and insists that she helps or joins me.  Since I have the strength and energy, I have no problems doing any of the manual labor like cleaning her apartment or taking her to the store to do some shopping or whatever.  I just have to keep reminding myself to slow down to her pace so we can keep going together.

[kitkatz]

All I know is it is hard to do it all.  My hubby took over the cooking and shopping for the past seven and a half years, now I am back to doing it for him.  Our lives have taken a strange turn around here.  I have been on dialysis or "sick" for so long and he took care of me.  With his accident I am taking care of him.  We have a lot of help right now with the CNAs coming and cooking and cleaning for him.  I could get used to this!

[angieskidney]

All I know is it is hard to do it all.  My hubby took over the cooking and shopping for the past seven and a half years, now I am back to doing it for him.  Our lives have taken a strange turn around here.  I have been on dialysis or "sick" for so long and he took care of me.  With his accident I am taking care of him.  We have a lot of help right now with the CNAs coming and cooking and cleaning for him.  I could get used to this!

CNA's? Is that like my VON's or CCACN's?

[kitkatz]

CNA- Certified Nurses Aide. Must be high school educated and go through a training course.

I have no idea what a VON is or a CCACN is/are? 

[angieskidney]

CNA- Certified Nurses Aide. Must be high school educated and go through a training course.

I have no idea what a VON is or a CCACN is/are? 

VON = I thought the V was for Vocational but it turns out I was wrong .. it stands for: Victorian Order of Nurses

CCACN = Community Care Access Centre Nurse

It was a nurse from the CCAC that had to help me do the Eprex (Epo) injections when I was on PD and afraid to do them myself. I know .. it was a very small needle given subcutaniously but it still scared me. But she got me to start doing it myself and then her job was done and I was on my own. But now that I am on Hemo I don't have to do that anymore.

When I still lived with Jay he would do it for me sometimes but I had to learn to do it myself.

[cayleighrose]

Ever since the dialysis stuff started, it's been really hard for me to insist that Joe do his share around the house.  I feel guilty, because it's like, what if he dies?  Should he spend his remaining days cleaning the bathroom, or whatever?  And I've let him get away with some really frivolous purchases that if he were not sick I probably would have fought harder to avoid.  I know that professionals say you should try to keep things as normal as possible, but I've been having trouble doing that.  Is anyone else in the same boat?

Sara,

I also have trouble keeping things normal. In the beginning when my hubby first found out he was sick, neither of us realized how serious it was. We both continued to work and do everything that we always had done. It wasn't very long before our fast paced lives caught up with us and hubby started having complications. We realized that nothing would be the same again.

While we don't have enough money left over at the end of the month for him to make frivolous purchases (although he did talk me into a big screen TV last year  ), I do have trouble denying him things or making him do things around the house. Basically he has not cooked or cleaned in about 3 years now. I really do baby him because I'm like you, what if today is the last day he'll ever have? Do I want my last memory of him crouched down cleaning out the vegetable bin in the fridge?

There are some days when I will make him help me with simple tasks, not really because I want him to do it, but just so we can do something together.  Right now, my hubby is still in the hospital recovering from a bacterial infecton and having part of his arm amputated and I spend all of my free time up there running about making sure he is comfortable and getting things for him. So, I'm sure he is enjoying every minute of it. 

[Sara]

Sara,

I also have trouble keeping things normal. In the beginning when my hubby first found out he was sick, neither of us realized how serious it was. We both continued to work and do everything that we always had done. It wasn't very long before our fast paced lives caught up with us and hubby started having complications. We realized that nothing would be the same again.

While we don't have enough money left over at the end of the month for him to make frivolous purchases (although he did talk me into a big screen TV last year  ), I do have trouble denying him things or making him do things around the house. Basically he has not cooked or cleaned in about 3 years now. I really do baby him because I'm like you, what if today is the last day he'll ever have? Do I want my last memory of him crouched down cleaning out the vegetable bin in the fridge?

There are some days when I will make him help me with simple tasks, not really because I want him to do it, but just so we can do something together.  Right now, my hubby is still in the hospital recovering from a bacterial infecton and having part of his arm amputated and I spend all of my free time up there running about making sure he is comfortable and getting things for him. So, I'm sure he is enjoying every minute of it. 

Oh my gosh, I'm so sorry to hear about his arm.  Do you mind sharing what exactly happened? 

[cayleighrose]

It's a long story, so don't say I didn't warn you. 

Well since the beginning of this year his fistula has been clotting off. He was going to the access center to have the clot removed at least once a month since January. One Sunday night in June I just decided to check it. (He goes M-W-F) and I could tell it was clotted again. I had him feel it and I even put my ear to it and couldn't hear or feel anything. So, we pretty much knew that he would have to go to the access center, which is about a 30 minute drive from where we live. So, he got up that morning to call dialysis and tell them that he knew it was clotted. They still made him come in so they could listen. Of course, it was clotted like we thought so they called his nephro and he had hubby go to the hospital so that a surgeon could get in there and see what was going on. So, he went in on Monday, was there for a week, got operated on EVERY day because just as soon as the clot was removed and he woke up the next morning, it was clotted again. Finally after Friday's surgery it didn't clot. He came home the following Monday night after dialysis at the hospital. The fistula was still fine through Tuesday night. On Wednesday when he went to dialysis it was clotted again. He goes back to the hospital and they do more surgery. He comes home for the weekend, but by Sunday he is in so much pain I take him back and they put him in a room. After he had the first series of surgeries he was having problems with numbness in his hand and forearm. He said it was very painful. So, on Sunday they tell him they think he has "steel syndrome" and they are going to take a look and see. I forget if that's what it was or not, but they gave him some clot buster medication to get rid of the clot. During some course of this hospitalization they decide his blood is too thick and start him on coumadin. He is there for nearly 2 weeks while they try to figure out the correct dosage. One night a nurse comes in to check his blood sugar and pricks one of the few fingers he had left on the numb hand. His finger starts turning black after this. (oh, and I forgot they put in an IJ catheter for dialysis since the fistula wasn't working) He comes home and goes back a couple of more times. After he comes home the last time the fistula is actually pumping but the doc (surgeon) doesn't want it used until the swelling from all of the operations goes down. (sometime in the middle of all of this they take him off of the coumadin) So, not surprisingly, the fistula clots again and he gets an appointment to go back to the hospital to have outpatient surgery. Over the weekend (July 22-23)he is in a lot of pain and can't sleep because of it. He calls the doctor (the nephro) but he tells him to just wait until Monday when he is supposed to go in anyway. Anyway come Monday morning and my hubby is loony as a cuckoo bird. He is hallucinating and talking strange. We take him to the hospital and they admit him instead of doing the surgery. He is completely out of it for an entire week and it isn't until Thursday that they tell us that he has clostridium difficile colitis which is a bacterial infection that is in your colon. (they think that was causing his delirium) But the entire time that they are treating him for the infection, they aren't doing anything about his arm. So by the time he comes out of his stupor (the following Monday) it's really too late. ( the surgeon told me that his fistula worked TOO good and kept all of the blood up towards the top of the arm and was only letting a small amount through to the hand or forearm, so when it clotted it just stopped sending blood down there completely)  His hand is swollen and cold. His fingers are rigid. It was a bad deal and he is pretty down about it. He is supposed to start at the rehab hospital today to get some physical therapy and get his strength back. I probably left tons of stuff out, so if you have any questions feel free to ask.

[JerseyGirl]

Gosh what a nightmare!  I am so sorry you two are going through this!  I'd pamper him too - at least for a little while...

[Bajanne]

I totally agree with Jerseygirl.  What an experience to go through!

[Black]

...clostridium difficile colitis ...

Did they tell you that he got that because someone on staff did not follow antiseptic protocol and transmitted it to him?  After all of the horrible stuff they put him through with the fistula, giving him C Diff is just unforgivable.  How is he doing now?  Are they going to try for another fistula?

BTW, the Vancomycin for C Diff costs about 4 times it's weight in gold, so I'm sure your insurance company was not pleased.

[cayleighrose]

...clostridium difficile colitis ...

Did they tell you that he got that because someone on staff did not follow antiseptic protocol and transmitted it to him?  After all of the horrible stuff they put him through with the fistula, giving him C Diff is just unforgivable.  How is he doing now?  Are they going to try for another fistula?

BTW, the Vancomycin for C Diff costs about 4 times it's weight in gold, so I'm sure your insurance company was not pleased.

Of course they never mentioned how he got it. They think we are stupid.  Thank God for the internet!   

We haven't heard what their plans are for a new fistula yet. He is doing better. He is ready to get up and around but the nurses on the dialysis floor won't let him. We found out tonight that he will be going to rehab tomorrow, so at least he can start getting his muscles working again.

Is Vancomycin the same as Flagyl? That's what they are giving him for the C Diff. Medicare is our primary insurance so luckily it shouldn't cost us anything.

[kitkatz]

I think "Oh crap" might be the words for that situation.  I have just been through an amputation surgery on my husband in May.  Then with a debridement and a stint on antibiotics; l  I feel your pain!

[JerseyGirl]

In fairness to the staff they could not have "given" him clostridium difficile colitis.  C.difficile is an opportunistic infection of the bowel that occurs when the normal bacterial balance in the intestine is off -usually from chronic or acute diarrhea- that interferes with the balance of the normal intestinal flora and fauna.  My husband got c.diff from the diarrhea he got when given clindamycin orally for a dental infection. The clindamycin caused him to have diarrhea and the c.diff took over.  It is horrible.  I think Black may mean VRE or Vancomycin Resistant Entercocci that is transmitted from an infected patient to another patient - a person can get VRE after using the bathroom of someone who had VRE and didn't clean up well.

[willieandwinnie]

Sara
I know exactly what your talking about. My husband has been ill now for 5 years and I feel horrible nagging him to do things. He feels terrible after dialysis and the next day he so exhausted that he sleeps in he's recliner for half the day. He does cook and do dishes occasionally and he'll feed the pets. He tries to help with the lawn, but if it's hot outside he's body temperature will start to rise and he has to come in to cool down, since he does not sweat anymore. I try not to complain about everything I do because like you I am really just thankfull to have him around. I take one day at a time. Just know you are not alone.

[Hephs-little-lady]

I pamper Heph all the time. I hardly ever ask him to do anything, except to wash the dishes, but that is his choice because I'm crap at it! He gets so tired so quickly that if he has to work around the house and stuff all the time he is too tired to do the things he enjoys and our time together is none existent because all he wants to do is sleep! I try not to treat him like a sick person though and know he would and could willingly help. I just don't want his life to be consumed by crappy chores when it doesn't have to be. There are more important things in life after all! 

[goofynina]

H.L.L.  I just want to squeeeeeeze you,  you guys drive me nuts, in a good way though.  Heph is so lucky to have found someone who loves him the way you do just as i am sure he loves you also    I am sorry for pin pointing you out, you guys just remind me of my niece and her hubby now and the way me and my hubby were when we first met (and still are, 20 years later)     You keep doing whatever it is your doing as long as it works for the both of you....

[Hephs-little-lady]

Sheesh Goofynina, you made me blush.

[kitkatz]

It is so hard when it is the hubby and not you who is sick.
You can control what happens to you, but are out of the control seat when it is him.  I truly know what that feels like and HATE it.  I want to control the situation but have to run in the back seat, not the driver's seat. All I want for Christmas is my hubby to be up and around and healed.  Even if it is just the wound healed up and the vacuum pump gone out of our lives forever!  I am on a rant.

H-l-l  All I am trying to say is I understand.  I really do. Now I have to clean the office and clear away the debris. Love to you and your H-L-L.