Mom is starting hospice soon

[Trish Bessette]

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.

Mary you are in my prayers. I haven't been through this but I want you to know that we are here for you to offer you support and a place to talk. I hope the patch helps your Mom. How hard it must be to be in control, brave yet scared to death. Your mom is very lucky you are there. Good luck with your DH too. Sometimes men don't know what to do in situations like these. Sounds like he is really chipping in and helping. Nothing better than that.

Remember to take care of you too.

I wish only the best for you and your family.

 

[julm26]

Rustysmom, my mom had PC and I took care of her for the 4 years, here is what I found.

My mom was on oxycodone and oxycontin - one every 4 hours for pain as needed and one long lasting. It never made her sick, and it did seem to relieve her pain. In the end she was on morphine.

They gave my mom miralax for constipation. Try to get your mom to take the appetite stimulants - she needs to eat, my mom was down to about 60lbs.

Find foods your mom really likes and get her those. My mom loved milk shakes, I was a regular at McDonalds for her milk shakes. She also loved orange gatorade, I should have gotten stock in that.

Please take care of yourself and I will keep your mom in my prayers. IF you have any questions please PM me.

 

[NEVERENOUGHWDW]

I would ask your Mom's doctors about Fentynl lollipops, she has more control of the pain management drug and it still goes directly into your bloodstream.
The patch can easily over medicate.......Just a thought.

 

[Rustysmom]

My mom said the meds came. Of course they came when the aide left, but Mom managed to open the door and pull the box in. There is something called a Comfort Pack in there that's supposed to go in the fridge. I hope it's ok until I can get there about 5:00.

Can't wait to try the oxycondone on her tonight. I'm praying it gives her more relief and doesn't make her sick. I guess it's also a Magnesium Citrate night too, because she hasn't gone in days. I want to get her to go good and then keep her going. I say that every week and then it doesn't happen no matter what laxative she takes.

Julie, I try to find foods that she likes, but it's so hard because she wants them, and then can't eat much of them. I can't tell you how many dishes I cooked over there that she took three bites and was "full". I keep trying though. At least today she said she ate cereal for breakfast, some of her Meals on Wheels lunch and the nurse made her open an Ensure and she said she drank half of it.

NeverenoughWDW, that's what I'm afraid about the patch too. I'll have to ask the nurse about the lolipops. If she can handle the oxycodone and it doesn't bother her, I won't be so worried about the patch being too much though. Just that it says don't use it if you haven't used narcotics and all she had been taking was the Tylenol 3. Maybe if she's on the oxycodone for a while the patch won't affect her too badly.

 

[Mackey Mouse]

I am now on my good computer, I definitely do not like my laptop.

I was talking to DH on the way home and asking him his opinions... he told me that he felt that the oxycondone did nothing but constipate him, also that it wore off in 2 hours.....hence the oncologist switching to the oxycontin....which worked wonders. No more pain and then add in that prescription laxative, we were in good shape..

My DH has had the whipple procedure.....very big operation for PC, and he will tell you he is never hungry. Never. He eats because he knows he has to, but could care less... I buy him whatever he wants, whatever I think he may like....he also has diabetes from the surgery. You see they take 1/3 of your pancreas, neglect to tell you that you will then have type 2 diabetes, but in the scheme of things, that is the least of our worries. I do not restrict his diet right now because truly I have no idea what is coming our way next.. The reason I am saying all this is do get the appetite stimulant, it will help her and she will want to eat more. I am sure she is nervous about constipation and all the other things that she has gone through, but if they mix her the right cocktail for now.....she may feel more like eating and more herself.

julm26, hugs to you, when I read what you wrote, it frightens me as I know what is ahead for me......but I cannot go into that future right now, I have to live it day by day and in the present.. I think it is wonderful that she lived 4 years, I do hope that during that time, you two were able to enjoy life a bit.. Hugs again.

 

[Rustysmom]

Thanks Marsha. Well, the magnesium citrate didn't work. Here we go again. I told her that if she didn't go today, I would have to call the hospice nurse and see what she can do and then she started crying. She's afraid they are going to put her in the hospital again. Marsha, what was the prescription laxative your DH takes?

I think I'm going to ask the nurse for the oxycontin. Mom can't remember to take the pills every few hours. I just called her and she said her back hurt. I asked if she took a pain pill yet today and she said no, she didn't take one since we gave her the first one last night. She didn't know where the bottle was and I told her I left it right in front of her on the coffee table. She's taking so many pills that she's getting confused, plus her liver probably is giving out adding to the confusion. On a happy note, the oxycondone didn't make her sick and dizzy like it used to years ago and she said she slept most of the night. If we can get her to eat more and go to the bathroom, she would be ok for now.

 

[Mackey Mouse]

glycolax.....Tom just spelled it for me. It is a powder that you mix in water and just drink down... tasteless....he had to take it twice a day in the beginning....then backed off to once a day while on the pain medication. Once he stopped the pain meds.. he did not have to use the glycolax.

Tom was not sleepy with the oxycontin and he was taking chemo and radiation during this time. You take it every 12 hours... here's the thing, it is not easy to get from your pharmacy, but since Hospice is involved, I am sure they can help. At CVS, they made us make 24 hours for it. They tell you they do not stock it as it is the drug of choice for many who do not use it for cancer pain. I have to say I was not at my home pharmacy as they told me they keep a few on hand and give them to the patient and order the rest.. people were getting robbed for this prescription drug..

Also, one more thought, I was forcing the water on Tom. I made him have a bottle beside him at all times and encouraged him to drink.

 

[Torontogal]

Rustymom -

How is your mom doing? My father just passed away 1 month ago from pancreatic cancer. It was Stage 4 and spread to his lungs and then his liver and kidneys. I watched my father waste away. He wanted to live so bad. My father was admitted to the hospital in Dec. and passed away in Jan. I cannot believe how fast this disease took his life. He never drank, smoked and was a vegetarian. He was also the best father in the world.
My father tried chemo 2 treatments but it did not work for him. The cancer was a beast. He could not eat anything aexpec jello just 3 days before passing but he could not keep it down.
The cancer spread to his liver and kidneys and he died 1 week later. His stomach ballooned out and he got so swollen.
My dad went into a diabetic coma and died peacefully by my side. I pray your get through this. It is a horrible disease. Be strong.

 

[Mackey Mouse]

Torontogal... I am so sorry to read about your Dad.. I hate this cancer I can barely breathe....I have seen those in the last stages......I just cannot go there yet. My DH is stage 4 and we scanned today so what you wrote really hit me today.......we have no results yet on the scans. We have have had 3 good years and I am selfish, I want more.

Mary, I do hope your Mom had a good day today......check in when you can..

 

[Rustysmom]

Mom is about the same. The Magnesium Citrate worked on Sunday. Now I know she needs a whole bottle. I'm so relieved about that.

She has pain from time to time, mostly when she gets up to walk and go to the bathroom. Her legs are very weak and she can't wait to sit down again. She also has pain after she eats and can't eat much.

What's getting me worried is how confused she seems sometimes. I don't know if it's from the meds or from her liver getting worse. I kind of don't blame her about being confused about all her meds because she's not used to taking so many. She must have asked me 5 times tonight what pill does she have to take tonight. Since she can take it every 3 hours, I told her she can take a pain pill at 11:00, when she usually gets up to use the bathroom and then shuts off the TV for the night. Five minute later, she asked me the same question. I'm nervous that she's going to forget that she took it and take another. I think we are going to have to ask for the oxycontin, which lasts longer and someone will be there to actually give it to her so she doesn't OD herself. Her aide can give it to her in the morning and I can give it to her at night when we go there after DH gets home from work.
I tried putting her pills in one of those organizer things, but she said it confused her. She wants to know what each pill is, and doesn't want to take them all at the same time. Oh well, I tried. I might put her pain pills in one of them so that she can't take too many, but I don't know if she'll go for that.

I don't want to think about the end stages either. My mom's stomach is swollen and so were her legs, although they looked better the past few days. She's so thin now and her face doesn't even look the same. She's so helpless and I know she hates that I have to help her change her underwear when she didn't make it to the bathroom. I miss the way my mom used to be. Her cancer is already in her liver and lungs, and I'm scared to death about what's going to happen in the end and will I be able to handle it? I don't think I can stand to actually see her die in front of me. I really can't. I think I'll lose my mind. I always had a fear of that and hoped that when her time came, she would go in her sleep. That's kind of selfish of me I guess, huh, but I know what I can handle and what I can't.

 

[Mackey Mouse]

Mary... big hugs.. try not to go there.. try to stay in the present and taking care of her and loving her. My heart is breaking here as I know and have seen what this disease can do to our loved ones...

Did she have treatment, chemo?? I am sorry I cannot remember. Sometimes and I have seen it......they call it chemo brain, it can fog them up. Also....ask for the oxycontin, it works better and keeps the pain controlled. Our oncologist drew us a graph explaining pain management....what you want to achieve is a straight line of no pain rather than the ups and downs which is what she is probably getting with the other pain med....you do not want the management to go down (her feeling pain) and our oncologist also told us if we thought that the oxycontin did not hold him 12 hours, we were to supplement with the other pain med... We never had to.

You will be there with her...she is your Mom, that bond is so special, you will be there. Try to be strong... I know it breaks your heart to see her like this, but you will always know that you were there when she needed you just as she was when you needed her..

Big hugs..

 

[Rustysmom]

No, she never had chemo, so that's not causing her confusion. I hope the cancer isn't in her brain too, but I think it's the pain she has sometimes, plus the meds, plus the fact that she's just sitting around in the same spot all day when she was used to doing things around the house and going out to the store a couple of times a week.

 

[Torontogal]

Mackey and Rusty,

I am so sorry what you have to go through. For me it was so fast. They told us my father had pancreatic cancer in December (needless to say it was a very sad Christmas) and I thought he would have 4 to 6 months which is what the internet says. He only had 1 month and I feel so cheated. My father became dead weight and we had to move him, etc. My father was on morphine for the pain. He would always ask for it and it was really hard to see him in pain. He could not get out of the bed. Anyway, be strong. I am thinking of both of you. If it makes things a little easier, most people with this disease pass away very peacefully in a coma.
Keep me updated... Hugs!

 

[zalansky]

Rustysmom - First I want to say, that it sounds as if hospice should be there 24/7 at this time. With both of my parents, when they were in the stage it sounds like your mom is in, hospice came in round the clock. It certainly helped ease our fears and they were great about keeping us informed as to what was happening instead of us just guessing.
Second, I was there when both of my parents died. It wasn't something I thought I could do but I did do it and I feel it was a privledge (sp?) that I was with them when they went. It also gave me great peace knowing I was there when they needed me most, as they had been there for me at every turn of my life. You can do it.

 

[Rustysmom]

We asked them about being there 24/7 and they said they don't do that. I thought that's what they did at the end at least, but the nurse at the intake meeting said no. There is a 24 hour hotline, and they gave me a pack of medicines to keep in the fridge like morphine and other things for agitation and such, but apparently we're on our own except when the aide is there 4 hours a day. They said if she gets really bad that she can go inpatient, but she doesn't want that.

I'm going to have to look into this more because it so far I don't think hospice is so great like I hear everyone saying.

 

[zalansky]

That makes no sense to me! We had 24 hour in home care once things got advanced. I guess maybe different hospices are run differently? I do know here we have the option of a hospice house (in care) or care at home. I would make some calls, that just doesn't sound right.

 

[Mackey Mouse]

Yikes... if you cannot count on Hospice who can you count on..

Many years ago, and I did not do this willingly, Tom and I bought a long term health care policy.....we pay lots of money each year for it and let me tell you when it gets tough for him and me and my children, that plan better kick in or it it will not be pretty.

I am fighter by nature.. after paying for this plan, it better kick in now that I see that Hospice is not what it used to be. Now that I think about it, when my MIL was dying, it was the visiting nurses and they were not there when she passed.. they came after to pronounce her, but my SIL was doing the brunt of the care..

I also think with my FIL, hospice was involved, but not 24 hours......they came and went.

Mary, I am not sure how the whole thing works with Hospice, but I do have a friend who recently dealt with hospice......if I remember correctly she was there and so was her sister..I am going to ask her about hospice..

 

[Regina]

Mary, first, I'm so sorry that you're faced with this. Marsha called and asked me to comment as we used Hospice when my Mom was dying.

Maybe it's a regional thing as they did not provide 24 hour care. (My Mom lived in Bergen County.) The nurse who was assigned to my Mom's case put us in touch with a wonderful Aide. We hired her privately. On weekends she would go home for a day, otherwise she never left my Mom's side. It worked out fine since my sister and myself could be there weekends. (I was there most of the time anyway.) My Mom wanted to spend her final time at home and we made sure her wishes were respected.

I saw how weak and confused my Mom became and I understand why you're worried about leaving your Mom alone. Have you asked Hospice if they can put you in touch with an Aide? Are there family members who can help? Have you asked the Aide you currently have if you can hire her to stay longer? I know she's making you a bit crazy, but it sounds like she's trying very hard instead of just sitting around which is all too common.

Did Hospice explain that they're about pain management? My Mom did very well with the patch which was supplemented with other pain meds, but it will reach a point where she will not be ambulatory at all and cannot be left alone.

I know how hard this is. You'll find strength that you never knew you had.

 

[Mackey Mouse]

Thanks Regina for posting......I knew that you would help as I have not had any experience with Hospice..

 

[NEVERENOUGHWDW]

We asked them about being there 24/7 and they said they don't do that. I thought that's what they did at the end at least, but the nurse at the intake meeting said no. There is a 24 hour hotline, and they gave me a pack of medicines to keep in the fridge like morphine and other things for agitation and such, but apparently we're on our own except when the aide is there 4 hours a day. They said if she gets really bad that she can go inpatient, but she doesn't want that.

I'm going to have to look into this more because it so far I don't think hospice is so great like I hear everyone saying.

Could you use hospice out of another hospital?

You will remain in my thoughts and prayers.