Caregiver forced into home dilaysis

[del]

Emma what I meant was have you told them about your schedule now. Getting up early to go to work and not getting home until really late.  It would be fine if he was going to be totally responsible for all treatments but from what you have said that is probably not going to be the case. If he was going to be totally responsible he could do the treatments while you are at work.

[emma67834]

Del, I did tell them what my schedule was and they told him he would have to be responsible for his dialysis. He did agree to that but I know him very well enough that he will have this issue or that issue and then I will be the one doing it. Maybe I am just scared that once he has this at home and nobody is really forcing him into doing it, that he will only do this as he feels like it. When he first took his shots of insulin it was whenever he felt like it and I think he may do this the same way. Hopefully not. I know that him going in center is a have to situation and he knows he really cant get out of that other than showing up. I don't know maybe I am overreacting to all of this anymore. My friends and my family keep telling me that we at least need to try it for his sake. I am just wondering how we are gonna afford all the gas for the training that is 244 miles round trip for 6 weeks!

[del]

That will be a lot of money for gas!!  Be sure you or his team at dialysis makes him understand that if he doesn't comply and do the treatments himself and when he is supposed to do them he has to go back to the dialysis unit.  Are yout friends and family willing to help out???

[murf]

I was quite distressed to hear that you are being forced into this situation. I don't know if this helps but I am a single male and have been on PD for one and a half years. I have never needed help setting up or coming off the machine. Is your partner capable of lifting the 5kg bags and running the drain line to the bathroom? That is the only physical exertion that is required. If the alarm goes off, I deal with it, Sometimes I need to ring the 24 hr help line but mostly I can figure it out myself. On the very odd occasion, my machine plays up (such as a power failure), then I turn it off and immediately start the daily bags (every 6 hours). To be perfectly honest, he is a little bit selfish. I have a l philosophy that this is my illness and I have to deal with it and not cause distress to others. Sometimes that means there are days where I have to tell white lies to friends and family that things are just fine where they really are not. There are very times when I need someone and I have a couple of intimate friends willing to share my depression. In conclusion to my rambling, I believe a carer has the hardest job of all. You have to share the illness as well as the guilt. Tell your partner there  are lots of singles on PD who manage quite well.

[Poppylicious]

Sometimes that means there are days where I have to tell white lies to friends and family that things are just fine where they really are not.

I can always tell when my Blokey is lying about how he feels, and I'm more than happy to make sure friends and family know that he's not as well as he's making out.  I like to share the burden of my worrisomeness.

 

How are things looking, Emma?

[lmunchkin]

Emma, one word you used to discribe your husband was"self-centered and has always been that way", ah, Ive had dealings with people like this and they certainly do need help but not your kind. If he has always been this way, you are not going to make any differents in his life no matter if you do or dont do him at home.  Tell him, the clinic, his neph. that you are not going to do this at home. If this was his behavior before he was diagnosed, it will always be his behavior.

Dont beat yourself up over this!  Yes he is sick, but he has no right to blame and make you feel quilty for this. It was choices that he made in his life that caused this awful thing to happen.  He has kidney disease, and that is unfortunate!  But he has alot of other issues within himself that have deep roots.  He needs counceling!

You love him, but I personally would not do him at home just because he wants it.  You may be right in letting him do himself because Nxstage is very hard to learn (looking back) as a healthy person, so it would probably be hard for him the patient. But I personally would not do him.  Love him, Yes, he is your husband!  Do not walk out, because this is very hard on him and he needs you more than you need him.  That is a fact!  But do not do him at home!  Take care of your children, love them and include them in the helping of your husband.  But if he in anyway gets angry and yells at you or your children, turn and walk out and leave him to his thoughts. He will think twice about doing that again. But tell him that every time he disrespects you or the kids, that you and the kids will leave for awhile.

I personally love doing home dialysis on my husband. Others on this site will tell you that Iam an advocate for it. But you are dealing with Teenagers who need constant supervision as it is.  A full time job and not only a selfish husband (as you said) but a self-centered one at that.

Bottom line, Emma, don't agree to this.  If he wants this, then let him do it all with very little help from you.  If he does do this and you see a change in his attitude over time, and you want to help him more than do.  My prayer is that he stays in-center! 


Please keep us in the loop, and all my  to you and your kids right now! Your husband needs lots of prayers too!


lmunchkin   

[rsudock]

bottom line is if you don't show up for the training he won't be able to do home dialysis...hhmmm...setup a cab to come and pick him up for incenter treatments.  "Look we are not doing this at home. Here's your ride, take it or leave it."

[lmunchkin]

Exactly Rsudock!!  This man has some very serious issues that need to be addressed. It is true that he can't help that he is sick, NO DOUBT!!  He will not get better with this disease unless he gets a transplant.  He can dialysis and feel somewhat better, but no chance at life like it once was.  I really think with his other issue Emma, he really should be in-center where they will monitor and hold him to the line.  No sneaking or shortcuts as he would probably do if done at home. 

And if I may add, Not all In-Center's are bad.  For the most part they try to do their jobs to the best of their abilities. I think its just that they have rules that they go by and expect others to follow. They have to answer to someone too, so they are just doing as they are told. Emma, please let us know of your concerns, there are caregivers and one's who have this disease themselves, that can really help suggest a solution that may possibly work for your situation!  We will do our best here at IHD.


lmunchkin   

[cookie2008]

If he is as stubborn as u say, he can do the same thing in center, not show up, refuse a full treatment, and they cant force him, they will treat him as nonconplaint which is no good if you try to get a kidney transplant.  I seen it at every treatment while I was in center. 
I dont understand if you are telling his unit you are not interested in homehemo why they are not listening,  they will be putting him, you and themselves at risk. 

[del]

Hope he realizes that it is just not treatments.  He has to be responsible for everything. Ordering supplies, packing it all someplace in your house, setting up the machine and disinfecting and taking it apart in the morning.  It is a lot of work and takes a big commitment!!

[lola]

our Center only asked me to come in the 1st day of training and then one other time, Otto had been told he had to do it ALL on his own and he did!!!!