Questions PLEASE! I'm new here and my 82 yr old father just started dialysis>>>

[RhondaQ]

a week and a half ago and now nurses tell me today that dad's fistula no longer works, so kidney specialist set him up for out patient surgery in the morning at 6am.  They will be running a catheter into the neck and shoulder area and I'm guessing this will be a permanent fixture...?  I have so many questions, but let me ask this one first.......Considering the fact that my dad is 82 years old and has always been healthy until 5 years ago when he was diagnosed with end stage renal disease, high blood pressure and the latest being Altzheimer's the treatments (dialysis) seem to already be taking their toll on him.  First it was the problems with the needles and his thin blood, then the fistula not working properly which resulted in his arm swelling and having to use ice packs.  Now today we get word of the surgery and of course we're all frightened for dad as he becomes even more confused with rising blood pressure whenever he hears the word hospital.  Granted it's out patient this time, so shouldn't be as huge a problem as overnight stays.  I feel badly that he's had to go through so much these past few weeks and having to explain what the alternatives would be should he decide to quit treatment or "tx".  What would you do in this case?  He's become more withdrawn lately and tries to make excuses for not going.  I also get the feeling that he's doing this for me..not for him.  We spoke to a social worker today and she saw for herself that dad depends on me for all of the answers including rather he should live or die.  Is it fair to put someone at this age thru a 3 times per week ordeal when they are so used to staying at home and trying to relax and enjoy their remaining days?  And now this surgery to top things off!?!?!  I can't even seem to get out my feelings the way they were originally intended before I started writing this post.  What are the complications of the catheter?  Will his dialysis be easier for him from now on or more difficult?  What are the risks of bleeding while he's asleep?  I worry that he'll tug at the wires or tubes.  I'm scared.........both for him and me too.  My husband is out of state on business and not due home for a few more weeks and this all happened (the dialysis) a week after he left, so I just feel helpless and unsure as to what's best for my dad.  He'll do whatever I say basically because he doesn't trust his own decisions, but everytime Monday, Wednesday or Friday arrives and I have to remind him that it's dialysis day, his mood changes from happy to totally depressed, angry, sad and then confused.  He's not sure why he has to do this even though it's been explained numerous times.  What would you do if this was your dad?  Try to keep as positive as you can and pray for the best?  That's what I've been trying to do...............please help.  THANK YOU FOR LISTENING!

[kitkatz]

You and you dad need to sit down and have THE TALK.  What does he want out of the rest of his life?
Is this treatment worth his pain and suffering?

[Epoman]

Does your dad WANT to be on dialysis? Does he have the will to live still? As to your questions the Catheter is temporary but in your dads case it could be permanent. I have seen people have chest/neck caths for many years. Obviously there will be no more pain when he has a catheter for dialysis. If he becomes incoherent yes he could pull the catheter out and he would bleed to death, sorry to sound harsh but it is the truth. If you were to stop dialysis he would obviously die and that is a choice you need to make so he and you need to have a long discussion of his options. One of those options is he fights and lives and the second option is he gives up and dies. At 82 it would seem he has lived a long/full life maybe he is ready. You say it sounds like he is going through this for YOU and you are probably correct. You need to remember that this is his life and you can't keep him alive to spare your feelings.

[Sara]

I don't have any helpful advice, other than maybe taping down the catheter really well in between treatments and having him wear more form-fitting clothing so it's harder to get his hands on the catheter when he's incoherent MIGHT help prevent him from pulling it out.  Does he live with you?

Also wanted to offer a hug.   

[nkviking75]

Wow, what a difficult position you are in. 

I feel for you.  I have had catheters off and on over the years.  The procedure is a fairly minor one, although any surgery has risks.  Looking around the unit I attend, I notice seniors who seem to need catheters permanently, so that is a possibilty for your dad.  A nice thing about having a catheter is that he can avoid the needle sticks, infiltration, and all the other hassles of a fistula.  But since your dad has Alzheimers, you probably are right to worry that he could pull it out.  No matter how conscientious you are, you can't watch him every second of every day.  Catheters also can be an opening for infection, so it may be hard for him and for your to take proper care of it.  You don't want to assume the worst, but you want to be prepared for it if you can.

Keep in mind that YOU need support.  With your dad's Alzheimers, it may fall to you to make decisions that may literally mean life or death.  The social worker should be able to help you find resources so that you are not bearing the burden of your responsibilty alone.  You can't help your dad as well if you're falling apart.  It's tough enough to deal with Alzheimers, and then kidney problems on top of that...  Please don't go it alone.

[RhondaQ]

spoke to dad's doctor on the phone today.  The surgery didn't happen.  The morning that we were to go my dad told me that he had given it careful consideration and decided that he's done with the whole program (dialysis AND the catheter, etc.).  Also apologized to me and said that he loved me.  Everyone has been informed now and my brother is flying in from Florida tomorrow afternoon.  My husband came home early from his business trip to spend two weeks here with us, so suppose the decision has been made.  My main concerns are-----#1 Dad has Alzheimer's and forgets what he's said or promises he's made, so we're having THE TALK repeatedly.  I have decided not to explain any further (well, least said the better), but just tell him that he doesn't have to worry about dialysis now and leave the rest to the professionals (Hospice).  #2-  I pray he doesn't suffer but instead goes in his sleep.  Things seem rather normal around the house so actions haven't changed as far as I can tell.  We are more or less in our same routine, but I do know that this could be temporary.  Today the only thing different that I noticed in dad's behavior was that he didn't eat as much as he normally does and his hands were shaky, but he stated that he felt okay.  Doc told me that he could pass anywhere within 2 days up to several weeks from now...there is no way to know for sure.  We stopped his longterm supplements, but continue to give him his other meds for blood pressure, etc.  Of course now he can eat whatever he chooses because why should it matter, right?  This is sad.............but it's a "quality of life issue" and he has chosen to enjoy his last days without treatment.  Hopefully he's able to do just that.........I pray with all my heart and soul that we're doing the right thing.  If my father was younger and didn't have Alzheimer's, we would have been even more inclined to continue with tx, but again that would have been his choice to make, not our's..........

Thank you so much for allowing me to post here and appreciate all of the advice we have received from all of you.  ::BIG HUGS::  Rhonda

P.S>  Please continue to pray.....we could sure use it:)

[Zach]

We are praying.

[Black]

My dad is 88 and has 50%kidney function so the time may come that I am in your shoes.  I hope I handle it as well as you have.

Lean on Hospice; they can make everything easier for all of you.

My thought and prayers are with you, your dad, and all of your family.

[vandie]

Stay strong.  We are here for you.

[kitkatz]

I hope all goes well for you as you deal with your fathers end of life treatments.  Use the hospice people as much as you can. They are a great help.  When my grandfather passed away they were a great help to my mother.

[Ohio Buckeye]

My Dad was 85 years old when he passed and he had some alzheimers and his
kidneys were failing him.  The doctor told us he felt it would be cruel to put
him thru dialysis and we decided not to have it done.  He was not really
capable at the time of making the decision.  He slipped into a coma and died
peacefully.  We have never regretted making that decision tho it was a difficult
time.  I'm glad your family is coming in to be with you.  I'm sorry that you have to go
through this and my thoughts and prayers are with you and your family. 

[Epoman]

spoke to dad's doctor on the phone today.  The surgery didn't happen.  The morning that we were to go my dad told me that he had given it careful consideration and decided that he's done with the whole program (dialysis AND the catheter, etc.).  Also apologized to me and said that he loved me.  Everyone has been informed now and my brother is flying in from Florida tomorrow afternoon.  My husband came home early from his business trip to spend two weeks here with us, so suppose the decision has been made.  My main concerns are-----#1 Dad has Alzheimer's and forgets what he's said or promises he's made, so we're having THE TALK repeatedly.  I have decided not to explain any further (well, least said the better), but just tell him that he doesn't have to worry about dialysis now and leave the rest to the professionals (Hospice).  #2-  I pray he doesn't suffer but instead goes in his sleep.  Things seem rather normal around the house so actions haven't changed as far as I can tell.  We are more or less in our same routine, but I do know that this could be temporary.  Today the only thing different that I noticed in dad's behavior was that he didn't eat as much as he normally does and his hands were shaky, but he stated that he felt okay.  Doc told me that he could pass anywhere within 2 days up to several weeks from now...there is no way to know for sure.  We stopped his longterm supplements, but continue to give him his other meds for blood pressure, etc.  Of course now he can eat whatever he chooses because why should it matter, right?  This is sad.............but it's a "quality of life issue" and he has chosen to enjoy his last days without treatment.  Hopefully he's able to do just that.........I pray with all my heart and soul that we're doing the right thing.  If my father was younger and didn't have Alzheimer's, we would have been even more inclined to continue with tx, but again that would have been his choice to make, not our's..........

Thank you so much for allowing me to post here and appreciate all of the advice we have received from all of you.  ::BIG HUGS::  Rhonda

P.S>  Please continue to pray.....we could sure use it:)

I'm sorry for your impending loss Rhonda, but I am glad that you are able to accept your fathers decision. He has lived a long time and instead of suffering a few more possible painful years he will pass on to a much better place. We will be here for you if you need us. Stay strong.

- Epoman
Owner/Admin

[RhondaQ]

Thank you all for the encouragement and it's good to know the opinion of another doctor that says it would be cruel to have someone at this age have to deal with dialysis, surgeries, etc.  My dad is so fearful of hospital settings anyway and with Alzheimer's sometimes thinks he needs to treat the nurses ULTRA friendly or they might retaliate against him (maybe even kill him!).  Strange how the mind plays such tricks on you, isn't it?  This is how scared he gets when going to the hospital or anywhere that has needles involved.  I think we're doing the right thing here.....He mentioned today to my brother that he has "closed the book on dialysis" so he's having another fairly clear day as far as memory goes.  Hospice will be here tomorrow to discuss options and the services that they can provide not only to dad but to us as well.  We had their help when my mother was dying of lung cancer in 1998 and don't know what we would have done without them.  Mom knew that she wanted to die at home rather than in the hospital and everyone was so scared, but they helped prepare us with warning signs and offered so much support to us.......they are just wonderful!

Again, thank you for your prayers.  I will keep you all posted as I can with what's going on.  I admire your strength and love and how close you've all become.  The only thing that I can relate to when it comes to this type of unity was when I had to undergo a type of chemo in 2001 and fortunately stumbled upon the Hepatitis C boards online.  Without them I would have probably not gotten the help I needed.  They too were there for each other and I'll never forget it.  Today as we speak the treatment cleared the active virus that was trying to destroy my liver.  It is still dormant and for that I give thanks to God and to the people at that forum as well as my doctors.  It was a long hard struggle but well worth the outcome.  I'm still alive today thanks to modern medicine.

Back to my dad-----Today is Sunday and I've noticed his coloring is not good.....rather pale and grayish.  He's been complaining of short windedness and how his legs don't seem to want to hold him up.  Other than that, he's hungry and wants a late breakfast, so we're planning on eating soon.  It's scary not knowing when or how he's going to go, but trying to look at it from another perspective-----do any of us actually know how we're going to die?  It could happen today should we get into our car at the wrong moment....it would be long suffering or quick.....painful or not..........we don't know, do we?  Dad still has the chance of outliving any of us!  So.........we have to take it one day at a time.....

Blessings to all of you:)  ::HUGS::
Rhonda

[Sara]

Rhonda, you and your dad and the rest of your family are in my thoughts. 

[paris]

Dear Rhonda, what a difficult time this is for you and your family. My Mother recently died from complications of Alzheimer's. It is an emotional time and you become the parent during the end stages. I will keep your family in my prayers and pray that your Father has a peaceful end in this world.

[Panda_9]

Sorry to hear your in such a difficult situation. And being that your dad has altziemers doesnt make it any easier. You can explain it to him until your blue in the face and he will still forget later on. If he has made this decision during one of his "with it" moments, then I guess thats what he really wants to do. A life on dialysis is not all that great however old you are, and I think it can be a cruel thing for someone who is elderly and not with it. Its heartbreaking seeing someone confused, and I dont think its much of a quality of life. I probably wouldnt want to do dialysis either. I hope he goes peacefully, and remember you have alot of support here to help you get through it.

All the best.

[Rerun]

Rhonda, I'll pray for you and that the Lord takes your father home quiet and easy.  They say kidney failure is an easy way to go.  If fluid overload is a problem he could go for one last dialysis and they don't take off any toxins, just water. It is called ultrafiltration. If he doesn't know the difference then maybe don't do that.  But, I, being of sound mine (at this time) would do it because I wouldn't want that feeling of fluid overload.  I just want to go from the toxins and just fall into a coma.  Just a thought.  You hang in there.   

[Sluff]

Rhonda, I've lost both my parents to a terrible painful disease and it is a hard thing to do. My prayers are with you and those that matter to you.

This might sound cruel but when my Mom past away I was almost relieved, not because she was gone but the stress is enormous from being helpless in your parents care and watching them suffer.

I pray that the end is near and peaceful, and I pray for your family that they find peace when he dies.