Mom is starting hospice soon

[Rustysmom]

My mom has stage IV pancreatic cancer and we finally went to see the oncologist for the first time today. She was only diagnosed last month.

The doctor wanted to try chemo, but said it would probably only add "months". My mom is 83 and very weak right now as it is, so she said she didn't want it. So the doctor is contacting hospice to call us and set up in-home hospice.

I know hospice will be really helpful, but it's all just so sad. Before this, besides pretty bad arthritis that affected her walking, she was pretty healthy. Yesterday she looked so bad. She recently had 2 bouts of terrible constipation that landed her a week in the hospital each time. The last time she wasn't allowed to eat for a whole week. She got out almost 2 weeks ago and is still extremely weak from that and she's skin and bones now. She couldn't even climb the stairs to get outside to go to the doctor. My DH practically had to carry her and then she had to go in a wheelchair. I know that bothered her because even at her age and sick and all, she likes everything just so. She still puts her makeup on in the house even when she's not going out. I know going in the wheelchair and having to be almost carried got her upset.

She's in a lot of pain, which is also why she looks horrible. The doctor gave us the patch for pain and Tylenol 3 when it isn't enough. I hope it helps. She's not starting the patch until tomorrow night because we are sleeping over for the weekend and she won't be alone if she has a reaction to it. Luckily today she didn't have the severe pain she had yesterday and I hope it stays away until I can get the patch on her.

I get mad at DH a lot, but boy, I don't know what I would do without him. He used to be a little rude to her when we would go visit every week. He would go sit in my old bedroom and watch sports and barely talk to her. But since she got sick, he's done everything for her. I don't know how I would have gotten her to the doctor today if I didn't have him. This is the only good thing to come out of my mom's sickness, because before this, I was this close to divorcing him for a lot of stupid reasons. Ok God, I learned my lesson, you can make my mom better now. Ah, if it was only that easy.

Please say a prayer that she is able to get relief from her pain and able to enjoy what days she has left, because right now she's not enjoying anything. The pain and fullness in her abdomen leaves her unable to eat more than a few bites, but we have been feeding her all kinds of things that she loves but was afraid to eat because it had too much cholesterol, salt, sugar, etc. I even gave her a 1/4 cup of beer last week with her pizza. It was the first beer she had since I got married and left the house 15 years ago. I think she enjoyed it, but of course she probably won't be able to have that again if she wears the patch, but it was enough for her. Cancer really stinks!

 

[safetymom]

I will keep you all in my prayers.

 

[LeahA]

You are in my thoughts and prayers.

My mom has stage 4 liver cancer and she also is not doing the chemo. The doctor wants her to do some radiation therapy to zap the tumors so she doesn't have any pain, she doesn't want even to do that. My mom is 73 and like your mom has been pretty healthy her whole life. I saw her yesterday and she is jaundiced and has no energy. It really is hard for me to guess how much time she has left. We want her to fight, but, there's no fight left in her. She is not in bed all the time, she mostly sits in her recliner. Hospice is being called out this week to help her and my dad out.

Hang in there, we will get through this. My dh is not a warm fuzzy guy with his emotions and sometimes it get's me mad. But, in little ways I know he tries to help me out. Hang on to your dh and you both will make it through.

Cancer does stink! (I wish I could write something worse!)

 

[Mskanga]

chemo really takes a toll on the bodies , it really does , it kills all the bad cells but it also kills the good ones. I am sorry that you have to go through this too , my prayers for you both .

 

[KimAshton]

Just sending you a big hug.

 

[catsrule]

Im so sorry about your Mom. I watched my Mom suffer from colon cancer for 2 years and I saw what it did to her. My Mom was 82. My thoughts and prayers are with you. Yes cancer and suffering stink.

 

[pjb_hockey_mom]

Keeping you and your family in my thoughts and prayers.

My father passed away two months ago from Pancreatic Cancer, he was 62. He had the whipple procedure, several rounds of chemo and radiation but unfortunately there was nothing more the doctors could do for him. He fought it for 18 months.

Hospice will help your mom and help to manage the pain. Be sure to speak up and be your mom's advocate, it's so important! Your mother is lucky to have you there for her.

If you would like to talk or have any questions please feel free to send me a pm.

So sorry you have to go through this.

 

[NEVERENOUGHWDW]

So sorry. You are in my prayers....

 

[LuvOrlando]

I have nothing to say that would help, just a

 

[Rustysmom]

We are going to meet with the hospice people tomorrow at Mom's house. Wish us luck. I hope my mom doesn't get upset about anything. I'm not sure if she really understands what hospice is. I think she does though.

The constipation problem is starting again and I gave her 1/2 a bottle of magnesium citrate last night and it didn't work. She got the other half the night before and it worked a little, but not much. Not again! She already ended up in the hospital twice because of that and I think a third time will finish her off.

 

[zalansky]

OP - I know I have responded to you in the past but just wanted to offer you support. Has hospice been out yet? They'll definitely help her manage the pain which is the core of hospice and what giving dignity is all about. I am sorry for what you are going through. I have been there and its gut wrenching. God bless.

 

[Rustysmom]

No, hospice hasn't started yet. We are meeting with them tomorrow for the first time. My mom didn't even get to go see the oncologist to find out for sure exactly what was going on until last Thursday, because she was hospitalized with an impaction the last time she had the appt. with the oncologist. So the oncologist referred her to hospice and I guess it will start soon after we meet with them tomorrow.

 

[LeahA]

Keep us posted on what's going on with your mom.

 

[NEVERENOUGHWDW]

Hospice is truly a blessing. It is a wonderful group of people & just remember thet are there to help you as much as your Mom.

I'm right across the bridge in NJ if you ever need to relax & meet for a cup of tea. I know how painful this is.

 

[Mackey Mouse]

Hugs and prayers coming your way....... I do hope that the meeting with hospice went well and they are helping your Mom with the pain and the constipation. It is a vicious circle.... they need the pain pills for the pain but they cause constipation.....Hopefully Hospice can help by giving her something to ease the constipation and yet keep her medicated so that she is not in pain. I am writing this and reading it and getting frightened myself as this cancer is vicious and painful....we as caretakers do not want to see our loved ones in pain and yet we are helpless against this cancer. Hopefully Hospice helps her, please do let us know how it went today...

 

[Rustysmom]

The meeting went ok. We were sitting in the dining room and my mom was in the living room with her aide, and she was getting mad because she couldn't hear all that was going on. The nurse was just asking all her information,but I guess my mom was afraid she was going back to the hospital or something. She also asked if my mom wanted a DNR, and I said I was pretty sure she didn't but never asked her, so she did, and then my mom started crying.

A new walker with wheels came tonight (she only had a regular one), along with a commode. My mom also got mad about that saying that the least she can do is walk to the bathroom, but I kept telling her it's free, take it just in case.

They are getting rid of the Tylenol 3 and sending us oxycodone. I hope it doesn't upset her stomach. We got Fentanyl patches from the oncologist but never started them because I was afraid it would be too strong, but if this upsets her stomach, I'm going to ask about going with that. She had a lot of pain this afternoon, as well as having pain in her chest now and I'm getting scared about that.

They are also sending us colace and senokot to help her move her bowels. She's still having a lot of trouble in that area and hasn't gone in several days. I hope something works.

She gets to keep the same aide she has now for 4 hours per day. She likes the aide, and she's nice, but sometimes she gets my Mom upset when she does things without asking first, like taking everything out of the refrigerator to clean the inside, including pulling out all the shelves and putting them all over the floor. I've never seen a cleaner refrigerator than my mom's because she puts paper towels under everything in there, and because the fridge is old, my mom was afraid she would break it. She also cleaned the tub the other day, not knowing that the tub has a clog and the water doesn't go down, so she left all the dirty water in the tub. I didn't appreciate that too much when I had to clean it when I went there that night. Then she cleaned the bathroom floor with my mom's face towel. It's great that the aide is there to help her, but she should say "I'm going to ____, is that OK?" first. Then when my mom tells her to stop, she says "It's my job". Yes, but it's Mom's house. So I'm not sure what's going to happen with her. I told my mom she could get a worse one that doesn't do anything at all.

Please wish us luck because I'm getting very scared now and my mom is too.

 

[LuvOrlando]

I'm so sorry that this is happening. Sometimes another ear of someone who won't be hurt by our own hurting (like spouses, kids & dear friends often are) is the best support. If you are a family of Faith I would think a visit from a Priest/Pastor/Rabbi might be comforting right now... even if you haven't gone for a while they usually accommodate circumstances such as these. If you do not practice any Faith than I would think a counselor might be of help... maybe there is someone at the hospice that might be able to help you both.

 

[Mackey Mouse]

Hugs to you...

I am not a medical person, but just wanted to share with you some of our experiences with pain medication and constipation...

First..... my DH did take oxycondone this last attack from this cancer. It did not quite get the pain he was experiencing with all the radiation, 5 days a week and chemo, so they switched him to oxycontin and if that did not touch the pain, he was to supplement with oxycondone. Oxycontin did the trick, he was not in pain, it was 12 hour relief before he took another one and there was no drugged out reaction from it, which we found unusual. As far as constipation, he was on a prescription miralax, which we put in his food, and that worked wonderfully... eventually he was able to stop both meds as the tumor in his neck was shrunk by the radiation. They will give you oxycondone before giving oxycontin, maybe it will work for your Mom, but if not, speak up. No reason for her to be in pain when there are meds that do work.

Senokot.....I have to tell you on the rare occasions that I have used this over the counter medication, it has caused stomach cramping.....just wanted to say that. I hope that it does not for your Mom, why would you want more pain, so keep in mind that there are prescriptions that work and that work well.

If you have any questions, I have been dealing with Pancreatic Cancer as the caretaker for over 3 years.. pm me, I am here to help you in anyway I can. I am not a doctor, just the wife of a wonderful man who is battling this disease..

Stay strong and we are here for you.

 

[zalansky]

We're here for you!

 

[Rustysmom]

The nurse told us that if the oxycodone didn't work well enough for us to tell them and they will prescribe something that is more long acting, which I guess would be the oxycontin. The oxycodone is coming today, so we'll give her one tonight when we're there to see how she reacts to it. It's gotta be better than the Tylenol 3 she's taking though, right?

I'm nervous about the Senokot causing cramps too. She took Ex-Lax not long ago and said her stomach hurt all night and it didn't even make her go.

The nurse was just at her house to see her and wanted to stick one of the Fentanyl patches on her because her pain was a 5. I told her not to, because the aide is going home soon and I don't want her to be all alone wearing the patch that might be too strong for her, and she might fall. At least the other meds wear off after a few hours. I told her we'll try the patch tomorrow night when we stay there for the weekend if she needs it. Then she said she wants to order an steroid appetite stimulant, but my mom doesn't want it. I told her to order it anyway, just in case. I know they gave her that the first time she was in the hospital and she was eating like a little horse, but then again, she was better then.

Thank you everyone, and Marsha, thanks so much for all your advice.