Depressed father with ESRD, condition deteriorating rapidly... :(

[austinsoul2011]

Hi all,

I joined up with IHD at the beginning of 2012 just weeks after my dad started in-clinic HD and now at-home PD. and have been a care-giver ever since.  I find that, no matter how others describe the ups and downs of taking care of a weakened loved one, you're never really ready for it.  I was glad to hear stories of other ESRD sufferers who found HD and PD improved their quality of life such that they were able to continue their lives; I  admire and continue to admire you all for your courage and persistence.  You're my heroes.  I only wish such positivity and improvement existed in my home.

Y'see, I've been caring for my dad for some time and I can only see things get steadily worse.  I'm seeing that the real problem isn't the results of the HD and current PD treatments; my dad's labs have always looked okay, and at times very good.  His more recent PD lab tests show everything in the green, and as a good, fast PD transporter, his Kt/V is consistently 3.5-3.75 -- which is a great clearance number.

But the real problem, as I'm coming to understand, lies in his frustrations with the treatments themselves.  And for that, I don't think there's much we can do about that.  He just HATES being hooked up.  He HATES depending on my mother and I.  He HATES having to inconvenience the doctors and nurses with his health problems, and many times he's been hinting at wanting to give it all up and pass away quickly.  He refuses to meet with therapy groups, he hates the idea of seeing a professional and sharing his thoughts, he won't eat what he's directed to eat.  He just sits at home most of the day, lying on the couch and feeling miserable.  And so, how can you help someone who refuses to be helped?  I believe his frustrations and feelings of guilt and inadequacy about his special care translate to anger directed at the very people who love and care for him.  He's recently started banging and throwing things when he's really upset.  It's shocking to see all this.

He's always been a bit of an insecure and paranoid person, but his dementia and mania are hitting an all-time highs ever since his kidneys started failing.  His mental state is degenerating quickly, and he starts yelling at the two of us for no reason at times.  He'll bring up past experiences and make wild accusations stemming from past worries and doubts about events that happened long, long ago.  All the days seem the same to him, so when I suggest he bathe after 2-3 days since his last bath, he accuses me of lying to him and says he took one the night before.  So frustrating, really.  How can you reason with someone who's losing his sense of reality?  How can you help someone who rejects all forms of help?  He's always been a person who has been overly cautious and tends to focus on the negative, but it's never been this bad before.

My mom's convinced that my dad has not accepted his condition; I'm inclined to agree, and don't know what I can do about it.  You need to have someone WANT to be helped to help them, right?  I know depression lies at the heart of all this dementia and wild behaviour, and I know there are experts who can best handle these problems, but you can't force someone to get help if they refuse to get it.  Sigh...  I'm not really looking for any advice or answers I guess, but I just needed to vent.  I love this man to death and wish I could do more for him, but I'm just running out of ideas.  He's done so much for me as my father, and I was no easy child to raise, so I just wish I could at least do a better job of providing for his needs and long term care.  He's always been such a kind, gentle and understanding father for the longest time, and I wish I could be a better son for him.

God bless you all, and may you all continue to find strength and knowledge against this horrible, terrible disease.   

[Joe]

Oh my, I'm not sure what I can offer. I too am hooked up to the machine for an inordinate amount of time every day. Between CCPD and my manuals, it amounts to about 16 hours. But it's what I do to get to that golden ring of the transplant, hopefully soon in my future. I don't like it either, not one bit. I look at my PD team and doctor as part of the plan, not that I'm bothering them or taking their time from something more important, I'm the most important thing in their day - at least for the time I'm seeing them. I think the situation is exacerbated by your father's dementia, and understand how frustrating that can be. If he won't go see a professional, is there someone that would come see him as an in-patient kind of thing? Just something to look at. We're here to help, if nothing else at least talk it out.

Good luck and God Bless.

[jeannea]

I'm so sorry. It sounds like you're stuck between a rock and a hard place. Make sure your dad puts your name and your mom's name on the HIPPA form. Then I would suggest meeting with the doctor to talk over everything and see if he/she has any suggestions. My grandmother had dementia and I can't imagine trying to get her to do dialysis. Just do the best you can. But if eventually you decide to let him go, realize that that is a valid decision as well. Please make sure that through all this you and your mom take care of your own physical and mental health as well.

[MooseMom]

I cannot imagine the psychological devastation that must come with combining dementia, depression and dialysis.  This sounds like a lethal combination on so many levels.

Just as devastating is the effect this must be having on you.  The pain you are feeling is evident in your post.  It must be incredibly frustrating to want to help but to be unable to.  To have to just stand by and watch your dad deteriorate must be soul-destroying.  I am so very sorry.

Dialysis can be a mental struggle.  It takes a certain amount of stubbornness and tenacity to cope with it and to cope with any chronic illness.  If something like dementia robs you of normal coping mechanisms, then, well, you just can't cope.

I'm sure he strikes out at you because you are there; you are an easy target.  It's not fair on you, but it is understandable especially considering his dementia.  We all know that kidney failure upsets the biochemistry of just about every bodily function, and we all know about the cognitive difficulties that can stem from ESRD and/or dialysis.  I have no doubt that this only serves to exacerbate the dementia and mania your dad is already experiencing.

What is being done about the dementia?  Is he taking medication for that?  Do you think if that could be better controlled, then his resistance to dialysis might be tamed a bit?

[Grumpy-1]

You mention that your dad "doesn't want to be helped" in a lot of things.  Can he do the exchanges by himself?  verse you or your mom doing it for him?  Ie - getting all the supplies, cleaning the space, cleaning his hands, hooking up to the cycler, unhooking from the cycler, etc.   That might be one way for him to keep control of his life as much as possible.  I don't know much about dementia, so I' not sure on what advice to give.  I see MooseMom mentioned meds.  That may help that part.  Grumpy

[Annig83]

Dementia is such a hard disease to deal with, and I agree with MooseMom, that with your father dealing with dementia, depression and kidney failure and D must be difficult for all of you.

I read an article (which I will post for you) about dementia patients.  Dementia and depression go hand and hand.  The frustration, irritability, and anger directed at you and your mother are all classic signs.  Has your father ever had memory testing to see how bad the dementia is? It's called a FAST test. Is he on medication for the dementia?  Has it gotten worse since doing dialysis?  Does he sometimes forget that he has to do dialysis?  It may be confusing and hard to accept because he may not really understand, or know what is going on?? 

My grandmother had dementia before she passed away, and it was awful.  It's so much like Alzheimers in the way that it takes over the brain. 
All the best to you

http://www.biomedcentral.com/1471-2318/7/27/

[okarol]

My mom has lymphoma and beginning stages of dementia - it's very hard to motivate her and encourage her. She seems to have given up and while she's not yelling or throwing things, she does argue about bathing, lies about exercising and takes no interest or participation in her medication regime or improving her situation. The docs have her on a low level of antidepressant now and it has helped a bit. She is now being re-evaluated so they may increase it. Do you have access to in-home health care?  Having someone who comes in to help with meals and bathing has taken some of the load off my sister. It's available through a state agency, so you'd have to call and find out what is available. If nothing else it will change the dynamic of what's going on now. I don't know where you live but in Calif. you can call 211 for referral to county or state services.
I know you're just venting but thought it might help to know of other resources.
Best wishes to you - you sound like a wonderful son.
 

[cdwbrooklyn]

Hi Austinsoul2011
I’m really feeling sad after reading your story.  I wanted to cry but I’m at work so I had to hold my tears in.  I do understand where your father is coming from as I have been there 14 years ago.  Yes, I’ve been on D for 14 years.  The first three years was the hardest for me.  As I read your story, it reminded me of the time I use to come home from D and start yelling at my daughter for no reason at all.  I was so angry during those days.  I couldn’t believe this was happening to me.  I was so angry that if anyone dear to ask me about my treatments, whether family or friends, I would literally cursed that person out.  I did not want to discuss anything with nobody.  I just did what I had to do and did not talk or think about it until the next treatment.   I was so angry that my family and friend would avoid me.  I would go into my room and just go to sleep.  I didn’t eat or clean.  I’ve lived in my apartment for 6 months and didn’t pay the rent at all.  I would go to work and stay to myself, come home and go to sleep.  I didn’t cash my checks for six months.  Don’t ask how I survived because it was the Will of God.  Lucky, my daughter was working a part time job and has her pocket money.  She also cleaned the house for me.  I was really, really depressed and couldn’t see it.  However, being in-center at that time, the nurses and techs would talk to me and try to cheer me up.  Let me know that I was still human and it happens to a lot of people.  They ensure me after a while I will receive a kidney and convinced me to put my name on the list.  After about a year, I started to come out of my depression. 

The second year, I felt very sorry for myself.  I was so ashamed that the talk of D would make me feel very uncomfortable outside of in-center.  Again the nurses and techs would talk to me and make me feel human again.  My family and friends stopped avoiding me and encouraged me to live my life no matter what; and, they showed me how blessed I was in spite of being on D. 
The third year, I started to accept what is.  I started to live my life and D became a part of me.  Now, I can talk about it freely and anyone who wants to learn I have no problem teaching him or her.  I am on Nxstage and living much, much better than in-center.  Now don’t get me wrong, I do have my days but in all, I’m happier now than 14 year ago.

All that said; hang in there with your father.  He has to come to terms that this is the cards that life has deal him for this season.  It may change it may not change but he have to figure out how he is going to deal with these cards.  It’s not easy but it can become easy if he let people close to help him.  However, I can really relate to what he is experiences.  Its not a good feel and it also can be very scary not knowing what the outcome will be going forward in life.  You have to get tough with him.  Let him know that this is not the end of the world.  He has to grab a whole of himself and MAN-UP.  Life is what you make it, good, bad, rich, or poor.  Life still will go on. Sometimes we need to ear it to snap out of it.  I know he’s your dad but dads need a reality check sometimes to.

Just my two cents