Facing dialysis alone

[Jonndad]

I have been lurking here almost 4 years.  I rarely post but I have been moved so much by so many here.  Finding out that the much beloved Epoman and Goofnina passed away before I joined was an incredible shocker as I had been reading all of their posts and Epoman's journey.  That was really upsetting.  Then I had to read the thread called, "how long does it take to die when you stop dialysis", a few weeks ago and I was just a slobbering mess after reading every message.  I am a 56 year old man with nobody in my life except my co-workers who I don't bother with my health problems.  My two teenagers are older and getting on with their life and I will not have them taking care of me.  I am so alone and most of you have that special someone there for you all the time.  You are very lucky.  Are there any supports groups in Colorado with people a person can go and talk with.  I love my internet connections but I am feeling the need to talk face to face with someone because frankly, I think I would rather die than go on dialysis although the part about not being able to breath is terrifying me to the extreme.  I need some support group or something but I can't find anything.  I don't know what to do.  Any ideas?  Thank you, John

[Bill Peckham]

Are you able to travel? There is an AAKP convention coming up http://www.aakp.org/events/convention/2012-convention/
These meetings are a great place to meet people face to face who know what you're talking about.

[Jonndad]

I am not trying to start a pity party here but I am almost totally blind from diabetes.  Though there are many people who do things without vision I have not learned those skills yet.  I am so tired. so tired.  so tired all the time.  tired of all of this.

[brenda seal]

What I feel for you Jonndad is not pity but empathy . The most important thing I would like to say to you is , please give your teenagers the gift of helping you . They do not necessarily have to look after you as such but they can give you support and help get services put in place to look after you . You love them , they love you and they will feel good about themselves knowing you need them . I am not the patient but I look after my husband Laurie , we have four grown up kids and trust me , they like nothing better than being asked to do something to help their Dad .
Please , also let your medical team know how you are feeling . I wish you all the luck in the world and hope you feel happier soon .
Brenda

[MooseMom]

Jonndad, I am really glad you've posted.  I know that internet support is a valuable thing, but there is nothing...absolutely nothing....like being able to meet people who are living with this disease and the myriad of obstacles it throws up.

It is easy for me to sit here and encourage you to go to the AAKP annual convention while not having a good idea of physical or financial difficulties you may be having, but if there is any way that you can go, I promise you it would be worth your while.  I attended my first IHD meetup in Las Vegas last year, and being able to meet others in this awful boat was probably the single most encouraging and positive thing I've been able to do for myself.  Blind people travel; they are not expected to sit at home and do nothing with their lives, and I am sure that with a bit of extra planning, you can make it to the convention if you thought it would be helpful. 

Do you have a social worker who could perhaps give you some information about local support groups?  I don't know why, but support groups for renal patients are really rare.  I know there are none around me.

I wish I could say that I understand not wanting to "burden" your co-workers with your health problems, but I'm not built that way, so I won't lie.  I have told anyone and everyone, not once thinking I was burdening anyone at all.  I know that everyone has something in their life that poses enormous obstacles.  It could be bad health, an abusive spouse, a drug-addled kid or a personality disorder.  Many people suffer in silence with mental illness.  I don't know your co-workers; maybe they are bad, thoughtless people, but just maybe one or two of them have their own health problem that they don't want to burden YOU with, so keep silent when sharing their experience might just make a huge difference in their lives. 

My husband and I are in wine club, and occasionally we will go to a tasting that is also attended by a local man who deals in specialty cheeses.  Well, I love specialty cheeses, the smellier, the better, but I don't get to eat much cheese because of CKD.  Anyway, my circumstances have changed in a way that now I can have more cheese, but it must be pasteurized.  So, yesterday, my husband nipped along to the wine store and happened to see the cheese guy.  He told the cheese guy about my kidney problem, and it turns out that the cheese guy has a brother who just last month got a transplant after being on dialysis for 3 years, so there you go...a new bond formed over a tale of crap kidneys.  So, don't be so quick to define yourself as a burden.  Maybe you can take a leap of faith and confide in a co-worker so that you won't feel so terribly alone.

I VERY MUCH AGREE with brenda seal about your kids.  You are their father, and you have many lessons that you can still teach those teens such as empathy and care and the understanding that life is hard and you have to be there for family.  Yes, they have their own lives to lead, but why must it exclude you?  I have a son who is mildly autistic and lives with his dad overseas, and the last thing I will EVER do is to shield him from my difficulties because this is life and he needs to see that he has his place in this family.  I insist that he come and visit me at least once a year, and while he is here, I expect him to help me around the house.  I do not protect him from my worries because when I have good news, he values it even more.  I really hope you will rethink this particular strategy because I know you don't want your kids to grow up believing they have no familial responsibilities and that life will provide them with nothing but rosey days.

Please take care of yourself and do what you can to rejoin the world.

[jeannea]

I always said I would rather die than do dialysis. My mom gave me my first transplant and I didn't have to do dialysis. Then 3 years ago I got really sick and woke up from a coma already on dialysis. I was pissed. But then I slowly adjusted. I did 6 months of hemo and 2 1/2 yrs of peritoneal. Now I have my new transplant. I am lucky to have my parents and sister to help me. But I do live alone. I am in charge of my care.

I think if you let them your teenagers will want to help you. And if you tell people maybe others will step up. I do agree though that talking to someone can be helpful. Maybe the social worker at the dialysis center can help you find someone.

Take your time to let it all sink in. You don't have to make any decisions now. Even if you start dialysis and hate it, you can decide to stop later. But maybe you will feel better and not want to.

[willowtreewren]

HI, John.

If you have been reading the threads for 4 years, you already know many of our stories. My sister-in-law also said that she would never go on dialysis. She based that on what her dad experienced 15+ years ago.

When the time came, though, she DID start treatments, but with a chest cath, because she had resisted getting a fistula. In the end she did hemo at home with the help of her husband.

I can't really tell you to learn more about dialysis because I assume you have been doing that over the past 4 years, but I so want to stress that even though there are some horror stories on here, there are also wonderful clinics with caring staff. We were very fortunate to land in one of those. We STILL go back to visit with them even though it has been over a year since my husband got his transplant.

Only YOU can make that ultimate decision, but I would definitely let your children know what you are considering.

 

Aleta

[chiawana]

John, I'm so sad reading your post, because much of what you said could have been written by my husband. He's been diabetic for years, and is so, so tired of nothing but health problems. Your dialysis center or doctor should be able to find someone for you to talk to on a regular basis, I believe that is part of the service at any center. I can't imagine NOT feeling lost, tired, miserable and alone having to be on dialysis even with close family to help you. Ultimately you are the one on the machine, alone, even if they are with you. And let your kids help you. They love you and I doubt they would consider you a "burden" at all.

[cariad]

Perhaps you could look for a diabetes support group instead of dialysis? People come to dialysis via so many different paths, but diabetes is the number one cause of kidney failure and so I would not be surprised if you found quite a few others on dialysis at a local diabetes meeting. The AAKP does hold monthly meetings in Colorado, but they sound more informational than emotionally supportive.

Yes, as others said, start with getting your social worker on the hunt for what you need. Also, if you see that there's another IHD member in your area, perhaps shoot them a PM and see what develops. I know many members here (myself included) interact with people outside the forum, exchanging phone numbers, email addresses, planning to get together, and so on. In addition to the IHD meet in Vegas (I know you said travel is difficult for you, but just know that you are invited and would be welcomed if you could make it) I met up with one member in Chicago and actually stayed at another member's house for a weekend, my entire family in tow. You do start to feel close to people interacting on the forum. Even a normally extremely private and cautious person such as myself has brought the forum members into my offline life.

Good luck and let us know how you get on with all of this. 

[Joe]

John, where in Colorado are you. I'm in the Springs and would be more than happy to meet and chat if it would work.

[SooMK]

Hi John, Maybe you could consider phone support? The National Kidney Foundation has a peer support program that might be a start (855-653-7337). I do not have first hand experience of it, just know that it's listed on their website. You may find that you provide as much support to someone else as they do to you, life can work that way. Best of luck.

[brenda seal]

I hope you live near Joe

[MooseMom]

The Renal Support Network has a phone helpline!  Maybe that could help?
http://www.rsnhope.org/index.php

800-579-1970

[Grumpy-1]

John  I'm in agreement with everyone Else's comments and suggestions.  I have one more for you consideration.  A church.  Even if you are not a very religious person or a member of some church, find a church close by and attend.  Talk with the Preacher, Pasteur or ?  and tell them you need to talk and need some type of support - spiritually, physically, and mentally.  I'm sure they will be able to help in some form.  Grumpy

[Jonndad]

My thanks to all of you.  You're all so kind.  Everybody needs people like you in their life.

[MooseMom]

My thanks to all of you.  You're all so kind.  Everybody needs people like you in their life.

Well, we're in your life, now.  That's what you get for posting here.