Question regarding my mother

[jesmitch]

My mother has been a diabetic for the past 35+ years.  She is only 65, but has been on dialysis for over 7 years.  18 months ago she almost died and required an aortic valve replacement along with 4x bypass.  The heart surgeon said that one of the arteries was so bad that he could barely graft a bypass around it.  She doesn't follow a dialysis diet and eats out for every meal and it isn't healthy.  Recently she started having problems walking, climbing stairs, and short of breath.  She has already indicated that when she is no longer able to get around on her own, that she wishes to discontinue dialysis.  I can appreciate her choice, but my question is, how long do you all think she realistically has left?  Are we talking about months, or years?  Her primary care physician said he is surprised that she is still alive with all of her health problems but he couldn't/wouldn't give me any idea.

I enjoy reading the forum and look forward to being a productive member in the near future.  I am just worried about my mother and want to try and get some good insight.

[MooseMom]

Oh gosh, that's such a difficult question, impossible for any of us to answer for ourselves, much less for someone we have never met.

We all know of that person who smokes a pack of cigarettes at day yet is still going strong at 80 years old.  We also know of the 40 year old who quit smoking 5 years ago but had a stroke, anyway.

If I were you, I think I would find out for myself how adequate her dialysis is.  How are her potassium and phosphorus levels?  Anemia?  Is she well nourished?  Can you have a chat with her clinic to assess her dialysis treatment?

[YLGuy]

Have you been referred to Hospice?

[jesmitch]

We have not been referred to hospice yet as she is still actively on dialysis and getting around on her own.  Do you feel we should start that at this point?  Generally when I think of hospice, it is <6 months.  Do you feel this is an honest assessment?  We, as a family, are ready for whatever may come as we knew this day would come sooner or later.  We are just not sure of exactly how big of a time frame we are talking about.  My gut feeling is less than 1 year, but I could be way off.

[YLGuy]

I believe when she chooses to no longer have dialysis treatments she would be referred.  I am not familiar with the process though.  I believe that there are members here that may have better information regarding your mother's situation than I have. 

[MooseMom]

I've had several doctors tell me that they were surprised that I still had enough kidney function to stay off dialysis.  I had one doctor who, seven years ago, expected that I'd be on dialysis sooner rather than later.  But they were all wrong about the time frame; they can't know everything.

Given what little I know about your mom, I think it is too early to be thinking about hospice, although if she does decide that she no longer wants dialysis, hospice is definitely the way to go.  They can make your mom comfortable so that her friends and family will have the time to spend with her that doesn't involve you giving her injections for pain, etc.

I am a believer in gut instinct, and if you are questioning the appropriateness of hospice, then it's probably too soon.

Maybe instead of questioning how long she has, you and your mother and her medical care team could come together and think of ways of improving her health.  If she has trouble getting around, maybe a gentle exercise program would help.  If she is having trouble breathing, that might mean she has too much fluid around her lungs and heart, and better dialysis would possibly take care of that.

[Traveller1947]

I hope you read MooseMom's post carefully, jesmitch.  I wish I could underline portions of it for you.  All the best to you, your Mom and your family.  It's a painful journey you're on, but you have friends here to help you along the way.

[sullidog]

I'd first start by getting her to follow the renal diet better, and then also follow the above advice.

[jesmitch]

She will not follow the renal diet.  She did good at first, but after my fathers death a year ago, she has let all of that go out of the window.  She refuses any help from her family as far as meals go.  She is very stubborn and set in her ways on this one.  I think she is trying to accelerate her demise at this point.  I will be getting a hold of her neprhologist next week to see what his feelings are.

[MooseMom]

She will not follow the renal diet.  She did good at first, but after my fathers death a year ago, she has let all of that go out of the window.  She refuses any help from her family as far as meals go.  She is very stubborn and set in her ways on this one.  I think she is trying to accelerate her demise at this point.  I will be getting a hold of her neprhologist next week to see what his feelings are.

Oh my...that makes this even tougher.  Let us know what her nephrologist says, and we can go from there.  Maybe between the lot of us, we can come up with a brilliant plan to help her out.

[billybags]

I think your mum may be saying "leave me alone to get on with what life I have left" She is 65 and you are not her keeper. I  meant no disrespect. In stead of asking how long will she live for I would say, I hope she lasts for ever. No one can say how long a person will last for. I for one hopes she goes on and on. Please listen to what she wants or needs, instead of what you think she needs. I know you only want to do what is right for your mum so just be there and give her some support when she needs it. This is coming from a 66 year old whose husband has been told by a cardiologist there is nothing more they can do. I know what it feels like to watch him struggle and be out of breath climbing stairs, but he gets there in the end, you have to live for the moment. it is all in Gods hands. Sorry if I have offended you.

[jesmitch]

You didn't offend me in any way.  I have always respected her wishes even when others criticized her for not following what she was supposed to do.  To me, it is almost like someone who has smoked their whole life, and when they are on deaths door, the doctors are still trying to get them to quit smoking.  She has a limited time left, lets be realistic, and I know she should spend it as she sees fit.  I am just one that hates not knowing when the time is going to be. 

[billybags]

You or your mother will know when the time is right to get specialist help. I hope you will have a long time with each other. Thinking about you both.

[*kana*]

I think many people contact hospice when there is a belief that their loved one wont be around for more than six months, but I'm a hospice companion volunteer and know people that have been on it for over 2 years.   Your mother can even call and put herself on hospice care if she wants.  I'm sure she'd qualify and they'd be a great comfort for her and you.