What do I do

[randhir]

I am from India. I am not a dialysis patient, but my Mother (63 years) is undergoing heamodialysis in Delhi, India since Feb 2008. With dialysis her general condition has improved and she is mostly able to perform the household work by herself.

What prompted me to join this forum has been a somewhat expected development of my Father also being diagnosed with reduced kidney functions. He has been a diabetic for the last 20 years or so, and my mother used to suffer from blood-pressure and hypertension for much longer. For the last nearly four years, my father was the main caregiver for my mother and they live all by themselves.

Now, with the the possibility of my father also needing heamodialysis, maybe in a few months (if not sooner), I am left completely clueless as to what I can and should do about this. I dont currently live with them because of my work and the need to support them financially better.

(I dont really expect anyone to tell me what I should do, but if anyone has been in this (or heard about such a ) situation then I wish to maybe learn from their experience. Dont worry about my being in India because healthcare, dialysis, the problems and sufferings are all common everywhere.)

[Traveller1947]

Hi, randhir and welcome!  Both your parents have kidney disease, your mother on dialysis and your father, her primary caregiver, is facing dialysis too, sometime soon.  That's a tough situation you're in and many of us can sympathize.  It seems clear that you'll be having an even greater role in their care than you do now with your financial support.  You'll need to be well-prepared with information and support for yourself and that's what you'll find here: answers to your questions and people who understand what you're facing.  All the best to you in this journey.

[fearless]

Does India offer any healthcare that might pay for someone to visit them who could help with the household, and/or medical care?

[randhir]

Thanks @Traveller1947 for your encouragement.

@fearless, We have been thinking about maybe hiring a daytime nurse who would accompany them to the Dialysis center also, as I have seen such an arrangement with other elderly patients. But, the issues with hiring someone are (1) loss of privacy, (2) dependence on someone else and the consequent reduction in self-confidence, and (3) attitude adjustments needed in the patient to begin to listen to someone else. The cost of hiring someone is the least of the issues; hiring someone qualified and good is a different matter though.

My Dad who is diabetic, has had considerable vision loss due to diabetic neuropathy, reduced sensation in feet and ankles, general weakness, fluctuating blood pressure and frequent bouts of indigestion etc. I observed that my mother has gained more than 20 pounds since she has been on dialysis. So, naturally, I wonder if heamodialysis would also help my Dad regain his strength and weight, or is it not possible with diabetic patients?

Whenever, I visit them and accompany them to the center, then I see scores of other patients on dialysis (most of who are diabetic), and I dont see any improvement in their health as months and years have passed. So, if diabetics dont benefit health-wise from dialysis and it only enables them to survive, then it would be a tough choice for my parents.

They often talk about letting it go, or even more drastic steps. Why does life have to be such a mess!

[MooseMom]

Randhir, welcome to the forum, and I wish we had all of the answers for you.  It must be rather frightening to want to look after your parents but being torn between financially helping them from afar and practically helping from right inside their home.

If the cost of hiring someone is the least of the issues, I might suggest at least start looking for someone qualified.  This can take some time, and as your father is not on dialysis just yet, you don't seem to have to find someone tomorrow.  So, begin your search AND begin talking more to your parents about this big change in their lives.

No one wants to relinquish privacy and independence, but people like us who are chronically ill can't afford to be precious about such things when our very lives are at stake.  We have to rely on all of the people on our medical team, and we are tied down to all manner of restrictions, so we HAVE to adjust our attitudes, otherwise our health will suffer and we will become nothing more than big bags of angst.  If your parents need a nurse to help out during the day to get them to dialysis, then that is what they need.  It may not be what they want, but they will have to decide which to address, their NEEDS or their WANTS.  Ideally, their needs will become synonymous with their wants.

You are right...dialysis does not treat diabetes in the same way it treats more specific kidney diseases.  Diabetes is a systemic malady, and it affects much more than just the kidneys.  Dialysis will not, for instance, improve your dad's vision.  What it WILL do is keep him alive by removing specific toxins from his blood along with excess fluid.

You say that your mother's health has improved on dialysis.  This is good news.  Frankly, I don't know if your father will be so lucky.  Your mother did not have the effects of diabetes to contend with, and diabetes is a game-changer.  But if he chooses not to dialyze, he will never know if his condition will not improve because his kidneys may well shut down, and he will die.  Dialysis is not easy, particularly for someone who is older and already having other medical issues, and there are certainly people who choose not to begin dialysis at all.  Your father will have some choices to make for himself, but I would hope that he will at least see if he can tolerate the huge intrusion that dialysis represents. 

I really hope you can sit down with your parents and get a good idea of what their thinking is, and I hope that they will give you permission to search for a day nurse you can trust.  That seems to me to be the best solution, but I'm half a world away and don't know your parents!  Please keep posting and let us know what you all decide.  Best of luck to you and to your family.

[Poppylicious]

  randhir.  Sorry I can't offer any advice on top of that which has already been given, but I wanted to welcome you to the site anyway. Perhaps the fact that your mother's general condition has improved on dialysis means that the support they'll need will not need to be as intrusive as you think; rather than help with the medical aspect all that may be required is someone who can take the strain off everyday living (shopping, cleaning, accompanying to appointments/dialysis, etc.) if needed?

Again, welcome.  Lovely to have you here.