Calling All care partners!!!

[tbarrett2533]

(I am not sure if I can even post in this section  )

I have been reading up on short daily home hemo and I would love to hear the care partners opinion on how much of a burden being a care partner can be??

If I choose this as my treatment option I would be doing EVERYTHING that I could do myself.... myself!!!! 
my boyfriend has agreed to be the care partner, but to be honest I am scared that I will be more of a burden then his girlfriend

any thoughts would be wonderful.
and thank you all from the bottom of my heart for doing what you do for your loved ones!!!! 

[lmunchkin]

T. Barrett, Im not going to lie and say it is easy.  This stuff never is!  But if BF loves you and is willing, why not?  You can try it and if it doesnt work for either of you, then you can choose an option that works for the both of you!  Keeping it real, the best option is Transplant, but that may not be an option!

I personally, love this NxStage system.  Hubby stays home all day and sleeps, watches his TV, then sometimes he will fix dinner (Not always but I will give him credit, as he does try) and when I get home from working all day, we eat and I set machine up for dialysis.  We generally start about 5-530 and D him till close to 9:00pm.

Now like anything else you do, practice makes perfect, right? TB, we are so use to it now that we enjoy it (yea, I said that) and each other so much more!  We lay in bed together, watch TV or Whatever! We snuggle, cuddle and act like "Kids" again!  Some times, I can go in the other room and be on this site while he D's.  He is D'ing right now!

You will get so use to each other, that it can become a relaxing time!  Now when it alarms, it is a different story.  I use to panick, because I would have to get manual out to read what's going on!  But over time, you will know what the alarms are for, and how to resolve them!  I think alot of my fear was I was afraid it may hurt him, but NxStage Support will tell you, nothing about the alarms will hurt him, that is reason for the alarms is to notify you that something can go wrong if not corrected!  When they told me that, I was so relieved!

I will be perfectly honest, TB, I like this NxStage, alot better than PD.  And We loved the PD. As long as it is done at home, we are happy!

Sorry about the book, but anything with this disease is going to be what you make it!  You just have to do it or else, you know?  But I think you would do well with this modality.  Look how quickly you learned PD.  If you are thinking about doing home hemo, than go for it!! I do believe once you get to doing it, over time, it will be right for you and BF.

Hope this helps!         

lmunchkin   

[willowtreewren]

I have to second what lmunchin said.

How does your BF feel about it. Is this HIS idea? Or yours? If he is 100% on board, then go for it. If it doesn't work out, you will at least know!

We treated "our" time on dialysis as quality time together. But getting things going and taking my husband off were definitely a bit stressful at times.

 

Aleta

[monrein]

I think age matters here to some extent, at least in my experience.  I was 26 on home hemo and although I did mostly everything, needles etc, it was hard on our relationship.  We survived but it was harder than either of us had anticipated and although it was the best option at the time, it was far from great over the long haul.  I much preferred the self care clinic choice which I did the second time round but that's not available to many.   One thing I would have changed is to have had a back up system so that he was not totally obliged to be there every single time....we can't have respite from D but it's better I think if our caregiver can occasionally.

[MooseMom]

Maybe I don't have a full understanding of home hemo, but it never occurred to me that my husband would be my "caregiver".  I know that he is required to attend some of the training, but that's for legal/insurance reasons.  I just assumed that I would be doing everything myself.  There are people who do home hemo without a partner, so unless you have a disability that requires you to have help, I'm not sure what a "caregiver" would actually do.

That's NOT to say that caregivers are useless!  LOL!  It just means that if you are unable to do the vast majority of the things that need to be done for home dialysis, maybe you should not do D at home in the first place.  Just my

You may want to look at this discussion on Home Dialysis Central's site about this very thing (you'll have to read through his entire reply to see what he says about carers).  Dr. Agar is Australian, so they have a different attitude about "caregivers" in that they don't really believe in them because this disease is OURS and WE need to be responsible for OUR treatment.

(boswife, I hope you don't mind me linking to your discussion with Dr. Agar)

http://forums.homedialysis.org/showthread.php/2954-a-few-questions-concerning-dialysis

[monrein]

MM, you CAN do everything but the issue is presence.  Lee had to be there for the 5 hours 3 times a week, every week, no matter what.  No one else was trained to know what to do if BP dropped etc.  I know that Anna and Bill both had/have Nxstage and flew solo but that wasn't an option here then or now. 

[MooseMom]

MM, you CAN do everything but the issue is presence.  Lee had to be there for the 5 hours 3 times a week, every week, no matter what.  No one else was trained to know what to do if BP dropped etc.  I know that Anna and Bill both had/have Nxstage and flew solo but that wasn't an option here then or now.

If the issue is just "presence", then I wouldn't define that as too much of a burden as far as tbarrett and bf are concerned.  But I suppose everyone has their definition of "burden".

[tbarrett2533]

Thank you all so much for your replies...... 

I went to the website at the clinic and read as much as I could about  home hemo and it said that the PT is the one who has to do the most!!!!! and well I am a smart, independent, witty, funny, cute (I could go on here forever)    so I would just need him here in the event of an emergency... but that may be too much for him....... We have not been together that long (8 months)
It was my idea, and he said that he would do whatever he needed to do to improve my quality of life!

I just really want to keep my options open!!
I feel like I constantly need a plan B with this disease!!
As far as transplant (I was on the fence about that for awhile too) but has since changed and I have been approved to go on the list and will go on the list by the end of September after my last Hep shot and dental clearance.   the wait list where I live is 8-10 years and I have no one who is willing to be tested so I need a plan B!!!

I just am not sure, but I like the encouragement I got from all of you...... the go for it and if it don't work then I can always go back to PD!!! 
Thank you all so much!!!!!!!!! 

 

[monrein]

This is a strictly personal opinion but I would not do home dialysis with a bf of 8 months as a partner.  This is not to say that it couldn't work but it certainly adds a lot of pressure and stress to a relationship, unnatural pressure in many ways and the reason that presence is required is because if more is needed, due to an emergency, then the pressure can be really substantial and scary. 

I had no idea the toll it took on my husband until ...oh about 4 years into it...

On the other hand, maybe your bf will want to get tested as a donor after watching you on D for a while....Plan C I'd call it.

 

[MooseMom]

I had no idea the toll it took on my husband until ...oh about 4 years into it...

Would you mind terribly expounding on this?  I worry about the burden of home dialysis on my husband, but I am not sure exactly what that burden will be.  That's the big unknown for me.  I have this vision of getting trained for home hemo/nocturnal and just getting on with it, with maybe my husband watching a movie with me or handing me my blankie or maybe being a third hand if something falls on the ground and I can't reach it.  So, could you tell me more about the toll, as defined by your husband, it took on him?  I may well be underestimating it all.  My husband is supremely confident, but I'm not on D yet, so I don't know if his confidence is misplaced.  Thanks.

[boswife]

Im going to say first that we LOVE (as much as you can love) home D with nxStage.  Im completly with lmunchkin and WTW  BUT it took me quite a bit longer to 'get there' i think.  so with that said
I really havent jumped on here as i've been the scardie cat of the group as far as D is concernd.  Now, ya gotta understand that i was scared of incenter D as well,(heck, there's not much im not scarred of..im a 'what if'er and look deep for problems    )  and so doing at home looked real good as far as getting him home, but needles were a real issue with me.  So, without going all into that, I think that if your doing most of the set up, and take down because you can, it could work out for ya. You do sound like you could handle it really well ... with your go get um attitude and youth!! (i have a nephew that is in his 40's and he does it all until take off and wife steps in and tapes him... so far so good.. Young people espacially seem to like to be independent and do very well on their own ...with partner if needed) And..BF may like the little bit of dependency on him as well???  We're all different so that part is hard to judge.  For me, Well, is it a burden? heck no.  Emotionally conusuming, yep. alot of work,,,yep  But so worth it to us to have the time to share.  It took me about 4 months to settle down (big baby) but now, *its what we do* and we've made it good. Sorry for jumping around so much...  Wishing you luck with this..  NxStage really is a great way to go if you can do it.

[monrein]

Well, I was 26 when we started on D at home and my husband was 32.  I was teaching at a university in Nova Scotia and he was doing a degree in Geology.  We'd been together for 12 years and used to travel a lot all over until wham...dialysis.  All the usual adjustments...restaurant and food restrictions, no more traveling in the same way, likelihood reduced of having kids blah blah blah.   Lee found it very difficult to tell me how he was feeling which was essentially that his life was over...in the major and the minor ways.  I felt his distancing but he was super protective and felt that he had no right to complain since I'd lost all the same things but also my kidney function...I was also still working full time and he was hanging out with other students and friends his age who had normal lives and who didn't HAVE to come home three days a week to D.  He found it hard to watch me be sick and we started to pull apart.  I knew that D was my only option at the time and he was in reality free to leave.  Back then he wasn't allowed to give me a kidney even though he offered but living unrelated donors were verboten.  We managed to overcome all this in the end but the truth is that he's a better person than me because I'm pretty sure I'd have left...to pursue the life I'd been wanting and working towards, including kids.  If he had made that choice, I would have liked him to have had kids and then shared them with me...I think that we would always have remained friends which is how we started out together anyway.  Now that we've been together for 40 years  things are different but I'd still not want to impose D on him in that way again...despite the fact that I used to do everything but he'd strip the machine at the end.  A huge thing about this personal decision though is that an excellent self-care clinic is right near our house so that option allows me to be protective of him in my turn.   He insisted on driving me there and back (5 days a week) but there is a parking lot available there and also public transit right near my front door so his tether was easily slipped and I made sure that he went up to the cottage sometimes by himself for a change of scenery and pace. 

[lmunchkin]

Yea, Monrien, I agree with you to some extent!  It is somewhat different from married couples to BF/GF relationships.  I also believe, and I don't mean this in a negative way, but men & women are different.  Now I do not find burden in seting up or tearing down or cannulating my husband, like Boswife, we have made quality time with it!  Iam an exception to the rule bc my husband suffers from many other health issues other than ESRD and he really needs me to do things for him!  He is almost 100% dependent on me.

Being an amputee is somewhat different, because you do have to rely on others for help! He can't drive, because of his sight.  Well just the other night while he was on the machine, he had to go to the bathroom! I got the bed pan out and he almost made it but NOPE!  He couldnt help it! So he wallered in it until I got him off and cleaned him and bed sheets. It was close to 10:30 when I got done!  He kept apologizing over and over!  I mean this is the Love of my life, how can this be his fault!  This happens alot, but I do what I have to do!  My husband is not a Burden at all, but the things that we have to do sometimes, can be a hardship at times on us! My biggest worry right now is not my husband, but how can I make ends meet financially!  Hubby made the income that kept us a float all those years, but since he gave it up & the income vanished!

I do at times, loose my cool, but all & all we are so good together!  Im just trying to keep him with me as long as possible!  I don't want him to leave and will do everything in my power to keep him here!  But I also know, that our footsteps are called by God, and if he calls me or him home: We will go!!! Ain't no power on Earth going to tie us down from His Will.

Sorry, I got off track there!  But I really do think or wonder, if the shoes were on the other foot, would MM do her husband, would hubby do Boswife or would my own do me!  Id like to think so, but I do believe the Women would do more for the man than vise-versa.  Doesnt mean the Love is any less, just the makeup of both are very different!

Tbarrett, I think if he could donate a kidney to you would be tremendous! But having backup plans are very wise on your part!  Let us know what you decide to do.  We would be glad to help you along the way!  Take it slow, TB.  Your disease will always be there, so there is no need to rush in to anything right away.  I know this is hard for you and others that suffer this disease, but spend more time with bf so that he feels he is loved.  The one thing my hubby said to me a couple years ago, it that he was so sorry that his disease has been a huge Distraction to him and He felt he had neglected me so much!  Of course, I "lied" to spare his feelings, but everything was centered around ESRD day in and day out, and I was so glad that this Wonderful guy of mine realized it and made the changes he needed to make! 

Now we talk about different things, we cuddle and express our love like we use to before D! There is nothing we can do about it, but we can make the Best of it!  He has and Im glad!  He still has his good days and bad, and suffers from depression, but that has lessened somewhat! I truly believe, our relationghip is stronger because of ESRD! How Kooky is that?   

lmunchkin     

[MooseMom]

As I've said, I've had a lot of concern about how my husband will deal with home hemo when the time comes for me to start D.  I've spoken to him at length about this, and we had yet another conversation about it tonight (after I read this thread!).  It really is a personal choice.  I think home hemo will work for me/us because, as my husband explained, he is at the age where all he wants is peace and quiet.  When he comes home from work, he's happy to have dinner and then watch a movie with me from Netflix.  If I do home hemo, we will be basically doing the same as we're doing now but with the extra task of setting up the machine, etc.  But the bottom line is that he wants me to be as healthy as possible, and the way to better health on D in the US is more dialysis, which unfortunately usually means home dialysis.  If you love someone, you want the best for them, and since I can't get the best in a clinic, then it's home D for me (if all goes well).

Otherwise, my husband will be burdened with a wife who is sicker than needs to be and will probably have a shorter lifespan and may not live long enough to get to the top of the waiting list.  A sick wife translates into a wife that won't be able to wash his shirts and panties as often or cook his meals or tend the garden, so it is in his best interests to make sure he copes with the "burden" of me doing home hemo.

[boswife]

  MM... Sounds like you got it right   I hope that you will find some comfort in your husbands and your talk.  I would think you should smile inside as he sounds right on board with you...  Makes me happy.

And imunch... we are SO on the same plane with this disease and our loved ones.  I love reading your words as i relate so well to theml .   It's not all bliss here, but pretty darn close.  Lots of work these men of ours, but we're blessed with good partners   (mine took years to get here, but we're here and thats what matters  )

[lmunchkin]

MM, you go girl! I think you may be surprised by what your husband might do. Maybe, and Im just saying here, he would like you to lean on him more!  You know?  Make him "feel" like he is helping in some way!  You and I are not very different.  You are so independent as am I.  And that independence make our men a little hesitant to approach, and if they do, they better do it "delicately" if you get my drift!

I know that you are not looking forward to D., but I have got to commend you, because you know, if no transplant before it, that it is something you will have to do and you have really prepared well, Moosemom!  So many people are still in somewhat of a Denial about it! But I mean You have gone way out of the way to educate yourself and especially with NxStage!  I mean, you are researching every possible site available to you and I think thats Awesome especially when you are the recipient.

When and If you do start NxStage, unless something better comes on the market, I truly believe it is the best going!  Now I know that Nocturnal is actually the best D. for feeling good, but Iam content with NxStage!  It works for our situation!  I know that we could do "Extended" with NxStage, but we just cant do that for our situation.

Anyrate, you are going to be so good with Home Hemo!  Not to rush you into it, but Im excited for you because of your preparedness!

lmunchkin       

Boswife, I know you have a good man, it is evident in your posts!  Sounds like we may have married "twins"  TEEEEHEEEE   

[MooseMom]

Aw, thank you for that, lmunchkin.  That's about the nicest thing anyone has said to me in a long time, and I appreciate it.

It's a rather delicate situation.  My husband does not share my blood type, but he has offered to do the paired donation thing.  However, he is afraid of all of the testing; he is afraid that they might find something bad (he needs to lose weight, but he just can't...he can do a lot of things, but that's not one of them).  I understand this viscerally, and we do not talk about it.  It is the elephant in the room, the Great Unspoken Truth.  So I don't know for sure, but I'd bet the north forty that he feels great guilt, so his way of making up for that is to support me with whichever modality I choose, no matter the "burden" on him. 

[del]

Hubby has been on dialysis for 14 years now and I have always been his "partner" . When he started on PD he did it all himself (5 exchanges a day).  I was working but when I was home it was a time to sit together and chat or I would do lesson planning , correcting work etc but I would still be in the same room with him. When PD stopped working for him he got really sick and we ended up being 6 hours drive from home for 6 weeks while he got straightened out on hemo.   I had to take sick leave time from work and we were really lucky to have good friends to stay with at the time.  When he did in center it was a little over an hours drive to the center and I would go with him every Saturday or any day I wasn't working and he had a friend travel with him the other days.  We did that for 6 years and then we trained for nocturnal home hemo - 5 weeks training at the unit 6 hours drive from our home.  Since then we sort of work as a team.  I do the ordering for supplies and when it arrives we both pack it away.  I set up the dialysis machine and he gets the needles ready.  The nocturnal is the best we have ever done.  It is just a routine now before bed 5 nights a week (we really appreciate the nights off though!!) When I am working we start setting up the machine about 10:30 at night so he can be off the machine early to give me time to get ready for school.   WE never traveled much except for a weekend here or there and we can still do that.  Doing nocturnal is really good because we get the whole day away from dialysis ad you have to sleep anyway so it is a good time to do dialysis. I have never considered it a burden. As for a transplant I am the same blood type and a 1 antigen match but he will not take the kidney from me because he is afraid something will happen to me.  Also we cannot get transplant surgery in Newfoundland . The closest place is Halifax so that means being away from home for a long time.  Can't even come home and go back for clinics  -it's too far!! Have to stay at a hotel or hostel once you are released from hospital. He doesn't even have his name on the transplant list.  I had most of the testing done 14 years ago but stopped when he said he wasn't going to take the kidney. 

Having to do dialysis is a whole lot better than being told you have some type of disease that nothing can be done for.  Hubby has a buddy that had a major stroke when he was 50 years old.  He is in a wheelchair and has trouble speaking and I often think that he would change places with hubby in a heartbeat!!  Other than hooking up to a dialysis machine at night our life is pretty much "normal" for us.

[lmunchkin]

You know Del, looking back when J was diagnosed and we went through all our options. We both went to Vanderbuilt to do all the testing for a transplant.  He went with me, Ill give him that, but the whole time he was telling me, " I don't want you to donate".  I kept telling him that I would whether he liked it or not. Long story short, I had to loose some weight but could donate to him, but he was not transplantable!

I sometimes, like MM husband, feel quilty because I can't do anything to change his situation!  But as I have said, it has gotten better between & for us, and we are very content!

Aw, thank you for that, lmunchkin.  That's about the nicest thing anyone has said to me in a long time, and I appreciate it.

 

MM, I wasnt being nice to you, (LOL) but telling the truth as I see it!!       

lmunchkin

[MooseMom]

MM, I wasnt being nice to you, (LOL) but telling the truth as I see it!!       

lmunchkin

That makes me even more appreciative.

[del]

lmunchkin, I think it is normal to feel guilty because there is nothing we can do to change the situation. We just have to deal with it and live the life that we have. Hubby is usually pretty positive about it all (he says who wants to hear me complaining all the time it isn't going to change anything).  There are times when he gets depressed a bit over it all and feels overwhelmed and that is normal too.  WE just trudge through then!!

[texasstyle]

Well, from what I gather from reading your thoughts and opinons about things here, it seems you already have the kind of attitude that would take most the "burden"-( hate calling it that anymore) off of your boyfriend. Just the fact you are putting effort and interest in finding out what you can do to be LESS of a burden shows the kindness of you. Somehow we find ways to work all this craziness out. The most important thing is communication! And the some more communication. **hugs**

[Poppylicious]

tb, I would imagine that as long as you've talked about it in depth and he's happy (and you're secure in your relationship) then why not go for it? 

If you love someone, you want the best for them.

Blokey won't look into home haemo because of me.  He loves me and wants the best for me; he knows I would panic and worry and HATE it.

But, I also think that we both found PD too intrusive at home and home haemo would (obviously) be the same, or more so.  By going three times a week to the hospital he gets weekends where he doesn't have to think about haemoD (apart from the fluid/diet restrictions).  Any form of dialysis at home immediately negates that and would cause friction between us. 

tb, you have to do what works for you (and your relationship).

I hope it works out for you if you go ahead!

 

[lmunchkin]

Absolutely right, Poppy!  We have to do what works best for everyone envolved. It is good that Tbarrett is having backup plans.  She is young and pretty smart!  I believe she will do well with what ever she does!

lmunch     

[Lillupie]

Hello,
 I have actually thought about this myself. I have always been told with the NxStage machine, or any home hemo for that matter you have to have a partner.
 Now, to be honest, and I really hope it does not ever come to this in my life. I want to stay on PD for as long as I possibly can. Get a transplant, have that last as possible, then go on home hemo. I actually love the idea of home hemo. I want that 2 hours 6-7 days a week. You have a lot less diet restrictions, which i love (more food to eat).
 Iam sorry to say this but I would not allow someone im not married to to go through what, 6-8 weeks worth of training for me. I  just dont trust that. That is me. I dont know your relationship personally. If he can donate to you, that might be easier on him. I do like the idea of home hemo though. Im not going to lie.
  I know my soon- to- be- husband would be willing to help me with this. We talked about this when I was in Germany.

Just my thought...

Lisa