At the end of my tether

[justjen321]

Every human indulges in self pity at one point or another.

I certainly didn't intend to imply that your husband was a horrible person. I'd wager you wouldn't have made 44 years if he were.

I'm just seeing SO much lately about caregiver burnout, and felt compelled to reply because it happened to me too. And it's a pretty unique feeling for those of us who have made the choice to care for someone we love.

My husband and I are youngish for this illness. (I'm 41, and he is 45)

For the entirety of my life, I've been the person who handles 'stuff'. I raised three kids, had a surrogate baby, and have an 'adopted' son who turned to me when his mother passed. In my extended family, I am, and always have been, the one who handles 'stuff' like planning funerals and dealing with the medical profession when someone needs an advocate. (I guess being bossy, and willing to speak up are helpful in these situations. )

I've spent my entire life being the person who says 'I got this'. And from the moment my husbands kidneys failed unexpectedly, 'I had this'. I educated myself, advocated my fool butt off, learned to do his dialysis at home (other complications make it impossible for him to do it himself), learned wound care, coordinated a medical team for him that I trusted, and more importantly, who trusted and listened to me, handled deliveries of all manner of things, maintained a home, a couple of dogs, planned and executed many trips with NxStage to keep my husband feeling active and able to travel (a passion of his.) I sent kids off to college, handled an uncle in the burn unit and advocacy for him, handled my father having a massive heart attack, and advocacy for him, lost my grandmother and went out to handle her funeral so the rest of the family could grieve. I took great pride in being the strong one. The rock in our family.

Until one day, I looked around, and realized that I didn't have a rock. A strong one. And I had a sudden urge/need to set down the heavy backpack I was carrying. To breathe for a moment. And I couldn't. There was nowhere to set it. No one to say 'Let me hold that for you a moment'.

I stepped back and realized that I had managed to make myself the least important thing in my life. Noble, right? No. Stupid. I love being a caretaker to people, it's in my nature, in my blood, and it gives me tremendous satisfaction. But if I always prioritize myself as the last well to be filled, the chances are, I'll just wind up bone dry. And if I do, I have nothing to offer anymore.

I probably projected some of that on to you. Caregivers, and particularly dialysis caregivers, are in an unrelenting storm. We know that the sun being out in this very moment does not mean that a horrible thunderstorm won't come in the next five minutes. We can sail along with the breeze and be completely in control, and the boat can suddenly flip over for absolutely no reason at all. And that leads to insecurity, and to not enjoying the calm sailing, because we are always, always worrying about where the life jackets are because we KNOW how tenuous this boat is, and that it could flip any moment.

After much soul searching, introspection and in deep conversations with my husband, we realized that in my life of trying to take care of others, I'd lost myself, and my ability to care for myself. My ability to do something as simple as go shopping with a girlfriend without a constant stress of what was happening at home. My inability to leave him in the hospital (thank goodness that hasn't happened to us often) because I don't trust doctors who don't know him (with good reason.)

So, I'm sorry for projecting. I have a soft spot in my heart for caregivers, and I advocate for them whenever I can. We beat Superman in the 'Hero' category, and rarely get recognized for it.

Be kind to yourself. Be gentle with yourself. Remember that you matter too, you are a gift to your patient, and deserve respect as such. Take care of your health, and most importantly, take care of your soul. Prioritize the things that you genuinely don't need to be doing right this second so you can do something for YOU, even if it's just watching a TV show that you love, taking a short walk to feel the sunshine on your skin, reading a book.

And as a last, lighter thought, when they get cranky, grumpy, and take it out on you.... remind them that an air bubble in their lines can solve this whole thing, and it's untraceable. (We use a lot of sick humor in our house. Helps us through the storms.)

Jen

[billybags]

jen, you got that spot on.

[boswife]

yes, once again jen, your 'right on'    Thank you for speaking so clearly for us all.  and FW,, let me tell ya once again  I speak of my 'precious' man as though it's 'always' that way... NOPE, theres times where not only am i worn, but completly ready to RUN from it all, and a whole lot of other things i could say about his times where he pushes me to extreeme. (hes very needy ok  )  What happens, why im not usually writing about it is because someone else, some 'other' carepartner, has come on to express just what i was about to, so i get relieve, strength from hearing im really not in this alone, and get on with it.  We all are in this together, patient and carepartners,,, all of us.  The heartachs and fears go for both sides    Please, please dont think we feel anything bad about your dh..... and, like i said before too,, i have a huge 'guilt' complex so dont usually express things as well as you. for fear of how 'ill' feel after so DONT YOU DO THAT too... k 

[Angiepkd]

You caregivers are so awesome!  Please remember that even though we may not show it, we truly appreciate everything you do for us.  As the "go to" person in my family, it is extremely hard to rely on someone else to help me.  Even if I would gladly do the same for him.  Hearing your stories and struggles has helped me be a better patient.  I try to bite my tongue when I want to lash out.  He is the only one there to lash out at, so I know he gets the brunt of my frustration.  Thank you for sharing your side of things.  I am trying to remember that he is struggling as much as I am in this whole mess.  I know he knows how much I love and need him, but I need to tell him more often.  Thank you all for sticking with us!  Only the strongest of relationships can survive this situation.  I am so glad mine has, and I know your spouses are thankful, too.   

[boswife]

and as for you angiepkd    bless your heart.  I sometimes fear any of you 'patients' reading this section because we love 'you all' Soooooooooooooooooo much.. Truly!! It has become nearly as hard to hear of 'your' struggles as much as our own 'personal' struggles.  Because we love someone in your same situation, our love is easy to extend to you all knowing the truths of it all..  Sending love and comfort and prayers, and blessing and all good things to us all

[Angiepkd]

and as for you angiepkd    bless your heart.  I sometimes fear any of you 'patients' reading this section because we love 'you all' Soooooooooooooooooo much.. Truly!! It has become nearly as hard to hear of 'your' struggles as much as our own 'personal' struggles.  Because we love someone in your same situation, our love is easy to extend to you all knowing the truths of it all..  Sending love and comfort and prayers, and blessing and all good things to us all

Thank you boswife!  Right back at ya! 

[justjen321]

@Angie - You patients are pretty damn awesome yourselves.

I don't know if all of us do this, but when I reference medical stuff for my husband, I always use the phrase 'We' and 'Our'. 'We' do dialysis at home. 'Our' this, and our that. It really does become a part of BOTH people in the relationship, even though one still pees just fine.

[Emerson Burick]

I don't know if all of us do this, but when I reference medical stuff for my husband, I always use the phrase 'We' and 'Our'. 'We' do dialysis at home. 'Our' this, and our that.

I think my wife would rather drink my UF than say anything like that.

[bevvy5]

Justjen, what an insightful illustration about the lifeboat.

Yep, it's hard to get out of that, "Waiting for the other shoe to drop" mode.  And yep, it will make life a living hell for both of you.  Been there, done that, have the T-shirt.

Different strokes for different folks, but thinking of dialysis as a joint project between the two of us ddn't work for us at all.  I am the manager in the family, the one that manages.  If I'm doing something, I'm managing it.  He didn't want to be "managed."  All my well intentioned suggestions about diet and dialysis schedules and exercise were driving us further apart. 

I had to take a step back and realize that ultimately it is his life.  He reaps the consequences, good and bad, of his decisions about treatment and everything that's attached to it.  A counsellor suggested that I look at myself as more of a tech than a spouse.  Frankly, it allowed me to stop wrestling with him for control - I'm more or less the help, he makes the decisions and if I don't agree with it, it's okay not to push my viewpoint.

I probably have not explained it at all well, and I certainly wish I had the sort of relationship that it sounds like you and your spouse do, but just adding my two cents worth.  One thing that is constant about kidney disease, dialysis and ll it's attachments is that there is no constant!!

 

[brenda seal]

Justjen , Bevvy and all my other friends who are walking in my shoes , indeed there is no constant and the boat can flip at any time . Laurie was admitted to hospital on Thursday after dialysis . It seems he has been battling an infection , which is now a full blown massive infection and needs IV antibiotics for at least three weeks . He obviously has not been feeling well for some time - hence the cranky pants . You would think by now I could read the signs . Tomorrow they are going to put in a Pic line and I am hoping that means he will not have to stay in hospital for the antibiotics .
Justjen , I think one of the hardest things for me about all of this was the realization that I no longer have a rock ! Laurie was always there to take care of me , I liked it that way as I am no women's libber . I lost my Mum a couple of years ago who was my other rock . Now I have to be the rock and you are SO right - it would be nice sometimes to put the backpack down for a little while .
I am so much luckier than most as we have four great kids who help out a lot because as I have said before when you are dealing with chronic illness friends and family exit from your life at an astonishingly rapid rate
I love having this forum to come to for solace and I too salute our moderators for making it all possible .

[MaryD]

 

[billybags]

Brenda, I hope things go well and that Laurie gets out of hospital soon. Dont beat your self up about not noticing any signs, when they are ill all the while, some signs go over your head. Hope the antibiotics kick in fast and make him feel better soon. Go on spoil him again.

[boswife]

((((((((Brenda)))))))   Prayers for Laurie, and for comfort for you.  I pray all that all will be well soon.     

[Grumpy-1]

Brenda   Don't worry about missing signs.  It took a trip to the ER for someone to find I had fluid on my left lung.  Now - how many times between Dr appointments and 3 times per week at dialysis did some one listen to my lungs and NOT hear 1 1/2 liters of fluid ??    And these were pros that should have known the "Signs".   Grumpy

[Angiepkd]

Sending prayers for you and Laurie!  Hope the antibiotics work quickly!  Give yourself a little break while your patient is being cared for by others.  Then you can start fresh when he gets home.  Everyone deserves a little rest once in a while, especially those who care for someone with a chronic illness!  And there should be no guilt about missing that infection.  Dialysis patients can go from fine to very sick in no time.  You are taking excellent care of him!   

[justjen321]

Damn Brenda,

I'm sorry to hear he ended up in the hospital. And the PICC line. Hubby just came out of the hospital for a pretty gnarly toe infection and surgery to remove part of the bone, and he too has a PICC line. I fought them like a tiger to keep them from installing it. It's utterly pointless when I have perfectly healthy, less infection risky access to give him the antibiotics at home. His Neph even ORDERED it that way. But alas, policies have not caught up with folks who take serious control of their healthcare, and for once, I was NOT able to exert my medical will on the 'Hospitalist'.

Hopefully, he'll be home soon, and you'll be dispensing antibiotics and all will be well.

[MooseMom]

Oh Brenda, I am so sorry for all of the rocks you have lost in your life. 

[ianch]

I will admit to having anger issues in-center, always verbal.  They believed it was stress and created a policy to remove people from the center that had the potential to put staff at risk.   

I believe all staff were inexperienced at detecting chemical imbalances which I believe were partly to blame.   The other issue was the nurses couldn't needle to save themselves and the pump-speeds were incredibly low resulting in complications.  On my wife's first attempt in the training centre her needling achieved a 350 pump speed where most in-centre staff were limited to 280 - makes a huge difference. 

I've been on HomeD for 6 months and have never fought with my wife over anything.  For me this helped as well as prescribed vitamins to maintain those pesky chemical imbalances.

I am aware that the removal of independence is a major factor in stress.  This is a hard topic to deal with.  The other point to remember is that toxicity affects the brain just like any other organ, possibly even more so.  Dialysis patients can find it more challenging to handle pressure situations.   Even with 40 hours per week of dialysis I sometimes struggle at work with high pressure challenges, and small outbursts of frustration result. 

My only suggestion is to try and get the root cause if you haven't already.  It might not be what it appears on the surface.