caregiver of a dialysis patient

[catherinev446191]

Hello,

I am married to a man with stage 5 kidney disease.  He is also on oxygen 24 seven.  It is very difficult living with him as he has crazy mood swings, is fatigued and cant do much anymore.  I think I am experiencing caregiver burnout.  anyone else out there feel the same way.  

[debrap601051]

Dear Catherine,

     As a nurse, and a former dialysis patient of 16 years (15 years on home hemodialysis) and seven years with a transplant, I want to encourage you and your husband that things can get better! Dialysis is doable and he can still have a happy, productive life. The 3 day a week in house dialysis is a little rougher on the body, because of the greater fluid shifts. Adhering to fluid restrictions is vital to him being able to breathe better. Diet seems hard at first, but it is a learning curve.

     More dialysis is better! I was able to do home hemodialysis with a machine from the  NXStage company (wonderful company, wonderful machine!). Because I did dialysis at home(with husband) 6 days/wk for 3/hours/day, I felt SSOOOO much better without those fluid shifts. I could eat and drink more! Life was good!

     He may need an antidepressant, but mostly he needs to move forward himself to find a means of dialzing that is right for him and take charge of his situation. I am not trying to be unkind, I am just suggesting that what seems a mountain before him can be conquered one step at a time.

     Please check out Lifeoptions.org and Homedialysis.org. They both have a weatth of information including a "kidney school" where you both can understand this new world better, at your own pace. God bless you both, Debbie (Tygs)

[mm42086099]

Hi catherinev446191

I myself am married to a man with kidney disease so I do understand the difficulty of living with someone with the disease.  The mood swings and fatigue are real and it deffently takes away from the quality of life.  You very well may be experiencing burnout for the lack of being able to do things that brought you joy.  I discovered that my husband was experiencing depression which caused mood swings and boardum.  He was over the road hazmat driver and was use to being independent and moving around as he pleased.  During his illness he has become very dependent on me for his very all. I was a very active women, still working, mentor, and a volunteer for many charities. Once my husband became ill all started to diminish until I found myself going to work and coming home to more work. Now feeling as if I've lost myself, I've now decided that I must take control of me. I've noticed that he is more capable of taking care of himself then he wants to admit. So I'm starting to include back into some of the decision making and giving him small task to do so that he feels a part of whats going on in our household.  I will continue to discover things that I think he can do as to free up more of my time to do something that I enjoy. If your husband is able have him call in scripts, schedule his doctors appointments and other appointments that are needed for work around the house. Of course I have to write instructions for him to follow (one more thing for me to do) but, this is giving him something to concentrate on beside his illness and my every move.  By trail and error I am determined to see me in the mirror again.

[JaneCares]

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@catherinev446191 wrote:

Hello,

I am married to a man with stage 5 kidney disease.  He is also on oxygen 24 seven.  It is very difficult living with him as he has crazy mood swings, is fatigued and cant do much anymore.  I think I am experiencing caregiver burnout.  anyone else out there feel the same way.  

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Hi Catherine,

Sounds like being a caregiver to a dialysis patient is a more rare situation on this site, but i hope you get a response from another person in your shoes. I chime in because i was once a social worker on a dialysis unit, and i do remember so vividly my patients, who had to limit their liquid intake to 'ice chips' and who's weight fluctuated so dramatically with water retention between dialysis sessions. Why is he on oxygen? is it related to fluid overload, or heart failure, or one of the pulmonary diseases like emphesema? I'm sorry, he sounds very limited as you point out, and he must be supremely frustrated at times. What (else) causes his mood swings, do you know? What i'm getting at is whether he could be helped by something like a psychotropic. He is miserable and adding to your misery. Have you (both) talked to his doctor(s)? 

I'm so sorry that both of you are dealing with all of this, and that you are feeling burnout. Is there a social worker at the dialysis unit who might suggest something?

for what it's worth, i'm listening...

jane