Topic: My dad's progress

My dad is completely jaundice for about 2 to 3 weeks now.  He is very confused.  He sleeps most of the time but tends to be more restless at night.  He is still strong enough to get up to go to the bathroom.  His nurse said he may have one to two months.  The problem is it is just my sister and I as his caregivers.  She works full time so I am here every day and I spent three nights here last week.  My sister is having a hard time concentrating at work.  After I did three nineteen hour shifts, I knew i wouldn't be able to function.  So this week it will be 6 days and one over night.  We are trying to make it one day at a time.  We approached my dad twice about hiring a sitter for 3 nights a week and he got so mad!  He has always been very old fashioned with his money and thinks it is a waste for a sitter to just be here.  We told him as caregivers we need rest and time away.  He REALLY didn't seem to care.  It is just so sad he could spend his last few months miserable and mad at us.  I have been with him everyday since he was diagnosed in May.  I want to maintain my relationship with him and show him respect, but I am so upset at his reaction.  We ended the conversation with the decision to have the Hospice social worker come talk with us all tomorrow. 

I just needed to vent.  Sometimes things are not pretty!

Re: My dad's progress

Hi Pam....you need a rest! I am wondering big time why no one is trying to or talking about clearing up the bile duct which is probably causing the jaundice.
It could be the Jaundice causing everything. Yes, my girl, you do need a rest.
Just try to remember that however your dad may be acting is the disease...not your dad.
I feel so bad for you as I don't know how anyone would be able to handle  this kind of situation without someone 'easey' like Teddy.
Excellent idea to being in the Social Worker. Let me know what happens.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My dad's progress

Hello Pam...your feelings are validated.  It is not easy to be a caregiver.  Occasionally, we have to get some support in our new found role.  I hope this helps:

Caregivers Bill of Right


I have the right to take care of myself.  This is not an act of selfishness.  It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object.  I know the limits of my endurance and strength.

I have the right to maintain parts of my own life that do not include the person I care for just as he/she was healthy.  I know that I do everything that I reasonably can do for this person.  I have he right to do some things for myself.

I have the right to reject any attempt by my loved one to make me do things out of guilt or anger.  (It doesn

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My dad's progress

Thanks for your responses.  I appreciate all of your support and allowing me to vent!  Because of my dad's tumor location the doctors are not able to re stent.  They said the last one was it unless chemo was able to shrink tumor.  My dad was only able to tolerate two doses of chemo.  I talked to the doctor on the phone after my dad entered Hospice.  He said an outside drain bag would be very uncomfortable at this point.  This conversation took place even before my dad's stent stopped working.  The doctor said he would not put a family member through it in my dad's condition. 

I know a lot of my dad's behavior is due to the toxins.  I am less upset with him.  Today I took him for a ride down the beach looking at all the classic cars cruising the coast.  It was really nice to get out. 

He is very unstable medically.  So many things he does reminds me of my Mom just before she passed away.  Hopefully the meeting will go well tomorrow.  At this point, I don't think we should push him.  We will probably have to dig deep and keep going. 

Thanks again.  I do like the caregivers Bill of Rights.  i can say I have about two to three going for me right now.  Best wishes to everyone, Pam

Re: My dad's progress

Pam,

I'm the patient, not the caregiver.  I'm very fortunate to have an exceptional caregiver. 

You may not realize it, and your dad may not be able to realize it right now, but you are an angel. 

You've been handed a lot of "crap" in your life right now (just like your dad has).  Vent whenever you need to.

Kathy

Re: My dad's progress

Thanks Kathy, love and best wishes go out to you and your caregiver.  It's nice you are taking care of each other.

Re: My dad's progress

Dear Pam,

Vent all you want.  I understand your pain.  My dad has been told no that there is nothing else they can do for him.  I am an only child, I luckily have a great husband and family but Dad looks to me for all decisions and help.  Dad too is very jaundiced, his bilirubin is 260.  Luckily he is still feeling well, eating little but often, no weight loss or confusion, just the yellow skin and eyes give his illness away. The doctors said he's 'amazing' because he should be feeling unwell.  Because he is still getting out and about people are starting to stare at him due to his 'glowing colour' which makes me mad
and I hope it won't stop dad going out whilst he feels well enough too.

Our Dads will be experiencing all sorts of emotions and they often say that you always take it out on the ones your love.

Dad is still positive at the moment, we have been given 3 - 4 months max, so Christmas is hard to think about.  My 9 year old is counting down the days but to me I'm counting down the days for a different reason.

My thoughts and prayers are with you and your Dad. 

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: My dad's progress

Andie and all,  thank you so much for your support.  The meeting with the social worker from Hospice went really well.  She talked with my sister and I first and then my dad by herself.  She was here to almost 7:30.  She didn't discuss the whole conversation she had with him, but told us he is more opened to hiring  a sitter.  He just thinks it is a waste of money.  She explained to him that he needs 24 hr care and we have to be prepared for an emergency/etc. and it would be neglect if we didn't give him what he needs.   The biggest thing is this morning his attitude seems more positive!  He just needed that talk with a neutral person!  So, I already picked up his cadillac and we are going for a drive in a bit.
 

Andie,  people stare at my dad, too.  I hate it!  I am so glad your dad is getting around so well!  He sounds amazing.

Re: My dad's progress

Yes, girls....people stare at Teddy also because his eyes have so much brown and red ringed around them and of course are quite sunken at this point. I didn't think color mattered so much anymore, sadly I guess it still does.
You gals are doing so well, keep up your courage, we will all hold cyber hands, and we will all get through this together!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.