What's worse, stopping dialysis or never starting?

[ODAT]

Oh man, I thought we were on a good path. This weekend was my son Nick's 16th birthday party. So I was bouncing off, well, people! I didn't have a lot of time to sit with any one person to talk. But boy was it hard to have to keep 'partying' when my mom said she 'really didn't want to do dialysis.' Yes, her decision and she knows the consequences. What I think brought it to the forefront that day was my husband's niece's father-in-law whom we love dearly, did not make it to the party. He is on dialysis. His wife and my hubby's niece had to leave early to take him to dialysis. Mom overheard me asking Mary how he was doing and she kind of shrugged and said weakly 'okay.'

One Day at a freakin Time (ODAAFT - I'm 'daft' alright). 

[MyssAnne]

Oh, ODAT.  That is so hard. On the one hand you can't blame her... but then, her family NEEDS her.  Darn it all.

I'm sorry. 

 

[The Wife]

Oh Odat, I don't know what to say.  Think I'll just give you a big hug. 

[okarol]

I think your mom is right, no one really wants to start dialysis. The whole idea is so much to deal with. I wonder if it comes right down to it, and she is feeling bad, she might decide to do it on an emergency basis. Some people cannot handle all the planning and preparation... preferring instead to stay in denial until the sh*t hits the fan. I know it must be very hard for you ODAT (ODAAFT is even better!) Take care!
 

[KICKSTART]

She needs to look at it like.. whats worse ..miss a few family occasions or miss life altogether? As already said no one wants to start dialysis but when it comes time to start our instinct to survive kicks in. Its fear of the unknown , thinking i could never cope with it, but somehow you do! If despite everything your mum still decides its not for her then you have to respect her wishes , but maybe a chat to some more 'positive' people before  she decides would help ? 

[The Wife]

Okarol has made a really good point Odat.  My partner said he wouldn't use a machine to stay alive but when the moment arrived, he changed his mind.  When I asked him about what made him change his mind, he said, "You really don't know what you're going to do until the moment arrives."  Your mom might do the same but if she doesn't, we're here for you.  We're here anyways, no matter what.

[ODAT]

She is scared, no terrified. She knows what happened to her sister. I remind her that it was 20 years ago and things are different now. And, that she is different. She doesn't have the other health problems that her sister had, nor the same as hubby's niece's FIL. I believe that in just these few responses (and a news article posted by okarol - thank you!) that I can have a conversation with her and share your views. You are all right. NO ONE wants to start dialysis. Do you outwardly tell her that the choice is a months versus years?

Her next neph appointment is 4/22. Her blood sugar has been low a lot lately and they have called the doctor (he has yet to call back - sister is calling him again). It was LO yesterday morning. She ate and it only went to 35. I don't understand it though. She says she never feels ill when that happens. She is getting her blood checked every week and gets arenesp and iron at least twice a month. Her back hurts her once in a while just above her butt checks she says. lol she is a pip.

Thanks for the hugs, your caring makes me cry good tears 

[kidney4traci]

ODAT, my heart goes out to you both.  I agree with her in her view point now I wouldn't want to be on dialysis either.  But as mentioned before , when you get past the point of no return,  her view point will probably change.  Then you realize how much better you feel again and that it really isn't that bad.  It is a way to stay living - for those around you especially.  It sounds like you two are close, she won't want to let go of that too.  Give her time, keep being a support for her and learning as much as you can.  She is bleesed to have you near her.  Does she have a hobby that she could do in the time it takes to do dialysis?  Sometime mention to her that it is a nice time to have for that too (reading, journaling, even sleeping!  Just a thought...

[okarol]

Below are the questions answered in the brochure "When Stopping Dialysis Treatment Is Your Choice" but many also apply to choosing no dialysis.
Here's the link to download and print out the brochure: www.kidney.org/atoz/pdf/StopDialysis.pdf

Can I really stop dialysis treatment if I want to? 
If I decide to stop dialysis, how will my health care team respond? 
How do I discuss my decision with my family and friends?
Can any changes be made in my treatment that might improve my quality of life?
Will I be asked to speak to a mental health professional?
Is stopping dialysis considered suicide?
How long will I live if I choose to stop dialysis?
What should I expect after stopping dialysis?
What type of food and drink could I have?
Will my health care team continue to help me?
Can I choose where I die?
Can I get hospice care?
If I choose to die at home, can I get a home health care worker to help my loved ones?
Will I still be covered by Medicare and/or my private medical insurance if I stop treatment?
If I change my mind, can I go back on dialysis? 
Can I name someone to make decisions for me if I am not able to act on my own behalf?
Is there anything else I should know about stopping dialysis?
What if I have more questions? 

[paris]

Odat, I feel so bad for your Mom.  Fear is really hard to deal with and then we add our own "made-up" fears and it just gets worse.  It is hard not to worry about what the future will bring.  I hate the unknown and if there is a problem, well, I just want someone to fix it NOW.  I worry about being a burden, causing financial problems, my children having kidney problems in the future.  I will say, I appreciate when people recognize my fears and don't always say "it will be fine, things will work out"----things do work out, but sometimes we need a moment to grieve the lose of our health.   So, continue to give her all the love and support you have been giving her.  She will accept dialysis when the moment comes--it is all just so scary right now. She is so fortunate to have you to care and worry.  Tell her we all care about her,too

[rose1999]

Odat (I've only just worked out what that means  )  I can't help but please give your Mom a big hug from me and tell her that I hope everything turns out for the best for her.  Hug for you too  Will be thinking of you.xx

[Sluff]

Odaft thinking of you and those important to you. 

[KICKSTART]

Another option might be to see if she will just give it a go when the time comes , that way she always has the option to stop. Untill she at least try's it , she cant really say that its not for her.

[Mimi]

Odat it is a different story for us old people and dialysis.  For some of us the quality of life is much more
important than the quanity.  Your Mom sounds like she is depressed and wondering if it is all worth it.
She certainly doesn't feel good and she could have what they call Hypoglycemia Unawareness which means you do not recognize the symptoms of hypoglycimia.  It is dangerous and the Dr. should be informed of this.  Also a few months ago I was feeling really bad and found my potassium was very low.  Hypoglycemia and potassium both
can make you weak as dishwater.  Also it might be encouraging to her to know that some people go on dialysis
for awhile and then come off for awhile.  My Dr. told me to look into this when it was time for dialysis.  And maybe you should tell her that I am 74 and my baclk also hurts above my cheek butt.  LOL
 

Love, Mimi

[jbeany]

Odat - I've said on here before  - jumping out of a plane with a chute strapped to my back was no where near as terrifying as walking in to the dialysis center the first time.  The center was far, far worse on the fright level.  I understand how your mom feels.  Tell her she's not alone in being scared!

Also, about the low glucose.  Check every one of her meds.  Many blood pressure meds will cover the symptoms of low blood sugar.  One of my doc's tried to put me on atenolol, and I couldn't tell when my blood sugar dropped at all.  At least not until I tried to stand up, and couldn't move.  If it's a new med, they can find something else! 

[ODAT]

Hmmmm lol I see that Sluff 'officially' changed my name! too cute - love the hugs

You all have given me so much support and things to say and do that will definitely help. Thank you 

Mimi, thank you so much for bringing this condition to my attention. I never even thought that there'd be a reason my mom didn't feel like her blood sugar was low. I sent an article to my sister to discuss with mom's doctor (they are currently playing telephone tag).

Wow jbeany! skydiving?! how exciting. Being in a plane and a helicopter (over Niagara Falls no less) was enough for me! I told my sis about the bp meds as well, thanks.

Kickstart, I've often wondered if you are worse off health-wise if you do a stint of dialysis. Guess we will only be able to see how her numbers go and do what we have to do. I think she'll go along with it. She tells us she didn't want to wear the sleep apnea mask, but does (most nights).

Thanks Okarol, very informative. Need to print out and have a pow-wow (sp?) with sister and mom. Get out the wine  oh wait, I don't drink! okay tea.

kidney4traci, mom reads a lot. doesn't have any hobbies and we've tried to get her interested. She does go to a lot of social events at her senior living apartments. 'course that won't help her at dialysis. I've been meaning to get her a 'horseshoe' shaped pillow for her neck. Maybe she could take it there and help her rest her head.

The Wife (aka TW - so dubbed on your 'Just Sharing' thread that is so popular!), your words ring around the ever-present DNR that mom has. It is like it is a machine to keep you alive. I hope she doesn't think they are one in the same, but it's on my mind and I will have a rebuttal if the subject ever comes up. thanks for helping me cover all the bases.

MyssAnne, you are right, I totally understand how she feels. Other than being tired I think she really doesn't think she is sick. As many have said, when the time gets closer and she is feeling worse - she will go forward with dialysis.

paris, love your avatar. As much as we do for my mom (and my sister tops that boat) we try to always make her feel that we are not burdened because of exactly what you said. We don't want her to make any decisions based on what we are going to have to do. She should know better though because when my dad was in the hospital for two months, all's she saw was love and support and fighting for his care.  - just noticed that Sluff has same avatar.

With dialysis - NO ONE GOES IT ALONE - that is why I am SOOO glad I found this site full of wonderful people!

[kellyt]

 

[rose1999]

paris, love your avatar. .  - just noticed that Sluff has same avatar.

Stupid question of the day - but what is it, well I can see its a tiara and what looks like the Eiffel tower, but I'm sure I should KNOW what it represents and I can't work it out  I feel really stupid 

[The Wife]

You know Odat, my mom was quite ill for the last two-and-a-half years of her life.  In and out of hospitals, many things wrong with her, the works.  One day she wanted to stop participating with the medical staff in regards to her health.  Well, being the person I am, I just stopped doing what I was doing, put my face real close to hers and asked:  "Do you want to live or die?"

She started doing what the hospital staff needed her to do and after five months of being in the hospital she returned home to spend another year with my dad and all who came to visit.  I'll never forget the day she called me after being released from the hospital.  "I never thought I would be here again but boy does it ever feel good to sit in my chair again."

The last year of her life was mostly spent in bed but when she could, she would get up and sit in her chair.  She once told me that even though she was tired of being so sick and wished for it to end, she often sat in her favourite chair and cried with appreciation for the family she loved.

I hold your mom, you, and all of your family members with the deepest of love. 

[stauffenberg]

Low blood sugar is a common problem among diabetics as their renal function declines.  Because the kidneys play an important role in the metabolism of the remaining natural or injected insulin supply, as the kidneys grow weaker, they metabolize the insulin more slowly, which causes more of it to remain circulating in the bloodstream, where it continues to lower the blood sugar level for longer than it did before renal disease.  Many diabetics find, as a result, that they have to reduce their insulin dosage or their insulin-output stimulating drugs by around 25% during the period prior to starting dialysis.

When the patient suffers endstage renal failure, it is just as rational to prefer dialysis as it is to prefer death, so it makes no sense to assume that the thing to do when an endstage renal patient starts talking about various lethal options is always to try to persuade them to continue living.  Life with endstage renal failure is not the same type of life that normal people have and that is generally assumed to be preferable to death.  If your mother wants not to do dialysis, then why not respect that decision as a rational choice?

[Slywalker]

Odat - you have received much feedback about your question.  Good luck sorting things out with your Mom.  I took care of my Mom when she was in her end stages after many years of dialysis.  Decisions are hard to make with a loved one.

 If you can assure she is in good health and good mental health I think you have to let her make the decisions about dialysis.  Rest assured that she will make the right decision for her.  I liked the questions that Okarol posted.  An excellent starting point list of questions.

Take care   

Sandyb

[twirl]

I think never starting would be worse
it is horrible
but I still get to see my family and friends
twirl