I'm Not In The Driver's Seat

[PrimeTimer]

As some of you know, after doing home hemo for over two years my husband has returned to doing "in-center" dialysis. I could no longer be his care partner for hhd because of Fibromyalgia. My FM has gotten very bad and not getting better. At least not yet. This is the worst I have ever felt, I struggle just to do basic chores but that's how it is. It's depressing but I am determined to dig myself back out of this hole (been here before) and get better. IT WILL happen. Just probably very slowly. I don't know that I'll ever be 100% but past the age of 50, who admittedly is? Anyways, I have my goals and my husband has his. We support each other in getting there.

Meanwhile, he has stopped cannulating his own buttonholes and lets a tech do it. He says it's because he feels he slows them down, even if he arrives extra early. He is very self-conscious and shy. So far, seems the tech is doing a good job. At first I was afraid they might ruin his buttonholes or worse, his fistula but you know what? I am learning to let it go. I think I have to. Don't get me wrong because I care very much about my husband and his health but I've had to realize that I am not the one in the driver seat -it's his fistula, his buttonholes, his dialysis treatment. And he's fine with it. So...for as long as he is okay with things I am trying to learn to be okay with things too and not stress over something I have no control over. When I stress, he stresses and vice-versa and it becomes even harder to deal with. So, this isn't a matter of "honey, why don't you just let me drive?" but rather, I need to let him do the driving now. I bite my lip thinking about it but nah, I think we are both doing okay. *shrugging my shoulders and sighing*

[nursey66]

Don't feel so bad . My hubby was going to go for home hemo 3 years ago when he needed dialysis , until we visited the clinic and he saw all the boxes , work and hassle , and he said no, went to the center , was less than a mile away , did really well, liked visiting the people and nurses.  He did have a transplant 1 year ago , but I was totally relieved he had changed his mind about the home stuff . I would of helped him , l am a nurse , but it would of took over our whole lives .

[Michael Murphy]

It is difficult to give up control of the care of somebody you love.  If you want to feel involved get a copy of his monthly labs so you can adjust his menu choices if needed.  I would also point out giving up control should not mean a total hands off approach you said your husband was shy and what I feel you need to be is your husbands advocate monitor his treatments and help deal with the occasional bumps in the road.  There is a happy medium.  I know how difficult this is for you. Your husband is lucky to have such a caring spouse.

[Simon Dog]

If you want to feel involved get a copy of his monthly labs so you can adjust his menu choices if needed.

If it is Fresenius, you can get your labs online - just ask your doc to set it up for you.  Not sure about other clinic.

Home vs. In-center is as much a personality thing as anything else.    Some people find the boxes, tasks and responsibility overwhelming.  Others find the thought of not doing their own care unthinkable.  It's all what works for you.

[MooseMom]

Prime Timer, I am so sorry to hear that your FM is worsening.  You have enough stress in your life without adding to it.  You are still in the driver's seat; it's just that now you are in your own car and your hubby is in his.  And that can be a very good thing, especially as you are both driving along the same highway.  (Enough of that particular metaphor!)

As long as he is feeling well and is happy with his treatment, well, that's the ideal for someone on dialysis, right?

 

Michael Murphy's suggestions are really good. 

[DayaraLee]

It's a hard thing to let go of control and embrace the stance that you don't (and don't have to!) "own" everything or take responsibility for it all.    I try to solve every problem, fix every mistake, monitor every number, and influence every decision... And by doing this, there's little doubt that I'm doing a greater disservice to G than if I'd make him own some of this health business. I applaud you, and I agree with Michael Murphy:

I would also point out giving up control should not mean a total hands off approach... There is a happy medium.  I know how difficult this is for you. Your husband is lucky to have such a caring spouse.

It sounds trite, but I believe it - One of the best things you can do for your husband is to give yourself good and effective TLC. I hope that time and determination see you approaching that 100% again!

[Charlie B53]

I think you both have made the wise choices after considering the options and this is THE most reasonable course of action.

I'm really glad his clinic is so near.

Hopefully this removes a bit of stress from you and let you concentrate a bit more on your care.   He needs you whole.  So you GOTTO take care of yourself.

I know nothing about FM.  I am sure you are studying, learning everything possible to help.  I Pray for your success in managing well.  You have done great so far.

Take Care,

Charlie B53

[cassandra]

I wouldn't kow what I could add to all of the above posts, I'm just wishing you well PT.

 And all the love, luck and strength in the world to the both of you


     

[justagirl2325]

I wonder if someday I'll end up where you are and have to turn over the reigns of his care to someone else.  I think it would be very hard.  Which is strange for me to say because I had always hoped he'd change his mind about home hemo but he hates hospitals.  I hope both of you take care of yourselves and be happy.