looking foR ADVICE

[bam0820]

Just recently my mother has been diagnosed with kidney failure. Unfortunately, she has been put on dialysis. Her doctor is pretty old and I'm not sure he has her best interest. Giving her symptoms I believe she has been suffering from kidney failure for a while and possibly he over looked it. I am the last to leave home( i am 25) so all the responsibility of he health is on me. All my siblings are older and have families of their own. I'm not sure what to do with her, yes thats my mom but I'm stressed out and I'm trying to finish my bachelors degree and figure out where my life is going. i know my mom comes first but we have been dealing with her health issues for years and I'm not sure what to do at this point... please send some advice.

[cs65 NKF Ambassador]

Are you able to go with her to the dialysis center to sit in on consultations with her doctor, nurse, social worker and dietitian? That would be the most help for her so you can ask questions and take notes for her. She will probably be feeling very tired and not at her best in the beginning. She may also be scared or angry or not feeling like she has to be there. The staff can help her through these common reactions, but you may be on the receiving end of these feelings, too. Try not to take it personally, hopefully she'll begin to see the benefits of dialysis after a month or more when she starts to feel better on her off days. She will also probably need help from you with cooking nutritious meals, especially on dialysis days. Get tips from her dietitian on kidney friendly foods and recipes. There is a kidney diet that she should follow to feel the best she can on dialysis days. Basically it's low salt, low potassium and low phosphorus. And she should limit fluids to about 6 cups a day (check with doctor) to avoid having to take off too much fluid during treatments which can lead to cramping. Good luck to you - this is a process and some days may be better than others, but you will get through it together. Also, don't stop living your life, too. You need to take care of yourself before you can take care of her!

[peewee2574]

cs65 has given you some good advise. Use the trained staff at your Mothers unit for advise and assistance. You can also get suggestions from the NKF. There are a lot of sources available and the Social Worker should be able to help you with contacts. Life will get better as you work your way with the daily challenges.

[KidneyCoach NKF Ambassador]

I'm unsure what kind of advice you're wanting especially when you say "I'm not sure what to do with her". Have you had a heart to heart with her? Have you asked her what *she* wants or expects of you, her dialysis, her doctor, clinic etc.? What are her wants, desires, needs at this point? Is she happy? Content with in-center treatments? Is she still suffering from side effects of kidney failure that could somehow be improved upon? How is *she* managing? Is she able to care for herself, i.e., cook, clean, personal hygiene, laundry, shopping etc? Does she know about home dialysis and does that interest her? Does she have a good support system in place like other family, friends, church group willing to listen, help out etc? How about a social or church group that can give her emotional support? These are all crucial elements for her well-being. Let's face it, this is really about her and not you at the moment. Take a look at NKF, AAKP, HDU, RSN and/or local kidney support groups for more answers. Also consider a care-partner support group on Facebook and most importantly have *her* (plus you) check out kidneyschool.org they have great information worth your time. Please let us know what it is you hope to achieve with your mom and what advice you're really looking for. Why would all the responsibility of her health fall on you? How old is your mom, does she have a partner, is she capable of driving, caring for herself? Wouldn't the bulk of health responsibility fall to her at this point? Help her "empower" herself. Don't be a care-giver unless she is completely unable to care for herself. Be a care-partner or better yet a "team-mate". Give the control to your mom, let her make the decisions, choices etc and you just be there to support or contribute when needed.

Its angering, frustrating and frightening to accept the facts that dialysis and/or transplant is forever. There is no other treatment or cure for kidney failure. This will be part of her life (and yours) for the rest of her life. There are people around that can help you both with coping tips. The social worker, dietitian and nurses at the clinic can help with coping ideas. You are not alone in this, neither is your mother. REACH out and be sure to have your specific questions and concerns available to get the answers you'll both need. You are not alone. Blessings

[KelliC_NKF]

I agree with cs65, if you can go to dialysis with her I think that would help you feel more involved and understand better. Here's some information on dialysis to help you learn more about all the options: kidney.org/atoz/atozTopic_D.... She should also ask about transplant: kidney.org/atoz/atozTopic_T...

[lincoln53 NKF Peer Mentor NKF Ambassador]

Everyone has given you good advice. The only thing I want to add is that you should give yourself permission to consider your own goals and desires. The responsibility of caring for your mother seems to be causing a lot of stress for you. Even though your siblings are married and have families of their own, I think they still might be expected to contribute in some way to your mother's care. You should not feel as though you have to take this on all by yourself. And I don't think you should be expected to put your life on hold.

The AARP has a resource guide that helps caregivers find resources in their local communities. Here is the link: aarp.org/caregiving/local/i...

You shouldn't feel guilty about turning over some of the responsibility for your mother's care to other people.