Mom's Cancer and My Caregiver Stress

meganthebeat · New User Joined: 02 Apr 2009 Posts: 2

I was really relieved to see this site. My dad is 59 and was diagnosed with PC in January 09. Things have been terrible, really, since about July of last year. He couln’t eat, lost 120 lbs since July, we have been tossed around by so many doctors. Since my dad can’t eat he had a PICC line put in so he could start TPN infusions. Then the oncology nurse came to our house to show my mom and I start to finish how to attach the TPN bag to my dad. I am 19 and my mom is 54 and if we wanted to be nurses we would have gone to school for that, you know?. Anyway- we have dealt with my dad fainting (he lost about 120 lbs because of this but his is still around 300lbs…not good), dozens of hospital stays and ambulance calls- and here we are. My dad had an infection and the PICC was taken out but to be replaced by a groshong. The doctor said the ONE DAY OF CHEMO might have sent him into early onset dementia. He is terribly confused, and to top it off he is belligerent, mean, and getting on our last nerve. I know it sounds terrible, but he is getting hard to deal with. He doesn’t want hospice, he is sick as a dog at home but at the hospital he puts on an act that he is fine so he can get released early. Every time we take him to the hospital he yells at my mom “Can’t you just let me die, I want to go home to my death bed,” then 20 seconds later he asks the Doc “When are we back on Chemo, I’m ready to fight this.” As of now, he is in the hospital with an alleged staph infection. I don’t know how this stuff happens to him; we are all clean and sterile when we are near him. My mom has rheumatoid arthritis, I am 19 and had to drop out of college to help, and we had to ask my uncle to help us. We pray and pray but we are losing hope. We are stressed and depressed over it all. Things are terrible.
Sorry this turned out so long, but does anyone have a situation like ours that can shine some light on what’s going to happen, or how you dealt with it? Thanks.

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

Yes - That's my problem too and what the thread is for...

Having the "patient" be mean and in denial and want to take their illness out on those around them causes extreme stress for the caregiver. Your story is the same for my mom.

It's called Caregivers Stress which can turn into full blown Posttraumatic Stress Disorder. Caregivers must take care of themselves.

I told the OC yesterday that, "I am DONE! My mom is the meanest person I know! If you send my crazy bi-poler mom home with "steroid rage" from her Gemcitabine (Gemzar®) infusion, instruction to take Xeloda for seven days which she delayed for 4 days, and instructions to inject anti-coagulant daily which she did not buy cause it was too expensive, then she cannot do it and don't expect me too."

I'm not a nurse or the OC, but I know my mom is dying and can't take this chemo on her own.

I have to feed her in bed this weekend cause she did not do her meds properly. And Yes, because she did not do her meds right. She is a nurse so she thinks she can do whatever she wishes. Her blood clots could break off without the anti-coagulant and the risk is highly increased by the dual-chemo, but she is saving money for the next ten years of her life.

It makes me made because the PTSD is brain damage. I'm being hurt for the rest of my life so the OC can "maybe" get 4 more weeks.

She loves to eat and cannot now, what is the point?

I think this is crazy Dr stuff and I really RESENT the OC looking at me while explaining the complications as if I'm supposed to be responsible and do something about it.

I'm very clear with everyone, I'm done. If they won't help me with my PTSD, I cannot help anyone else. I'll call Hospice if something happens and then go for a walk.

I'm mad, but that is a symptoms of Caregivers Stress.

I hope I get over this one...

meganthebeat · New User Joined: 02 Apr 2009 Posts: 2

Starseed…you hit it right on the head when you said” “I think this is crazy Dr stuff and I really RESENT the OC looking at me while explaining the complications as if I'm supposed to be responsible and do something about it” They talk to my mom like she is a RN. They have my dad on a firm medicine schedule and we are going out of our mind to stay on schedule.
We recommended hospice to the Dr and he was like “no, he is nowhere near the point of hospice. He is doing fine.” Okay, Doc, if he is so fine then he can go home with you because we can’t take care of him anymore! The doctor looked at us like we were crazy murderers for asking about hospice. But at hospice he could get so much better care, and we could start taking care of ourselves again. I just don’t understand our OC. Oh and they are starting to doubt our procedure when we prepare the food bag for my dad. We are over-the-top-sterile when we prepare the bag. Oh yeah, blame the caregiver…look at the rehabilitation place my dad had to go to for walking a few weeks ago? Or how about the chemo making him a lot more susceptible to sickness? Nope they blamed us. We have a nurse coming out here soon to watch our procedure. Bring it on.
How long will this go on? He can’t eat-hasn’t for months, he is losing his mind, and taking all of us with him. I don’t want him to die-but I know better. I don’t want this situation anymore!
Starseed, my heart goes out to you. I know how you feel, hopeless and everything seems endless. We are there too, I hope you feel much better soon.

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

Hey meganthebeat,

I feel better today.

It's really hard and I'm OK one day and pissed the next.

We do have to remember they are dying and we are not.

This is a life building experience too.

I'm a new man and my life partner will always know I'll be there no matter what happens (even if I go crazy again.

Many many people cannot and will not help their family in passing, just visit in the hospital once a week or once a month.

It takes an even bigger person/soul to care give for an abusive person.

I'm been on this board for several years, I rarely see people posting about the pain of dealing with an abusive patient/parent.

It's not fun - my mom was no "chicken soup" mom, meaning she neglected me my whole life. I have cooked more dinners for her in 9 months that she ever has my whole life. Now with cancer, she abuses me even more and takes it out on me.

This is hard on all of us, with nice or mean family members. It's just hard. But we are not dying. He sounds close, but we never know until the day.

Years from now you'll [we'll] have a better perspective and be grateful we did help.

Try to go out with friends if you can - OK - Go have some fun ASAP

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