Mom has lung cancer that has spread to her liver and bones. Hospice seems to be medicating her to death. Advice?

I am no fan of Hospice. While I think they provide good care and help for families, I question their care for people not at the very, very end.
I have some accounts to post, but will do so on a new thread. I just want to caution people about choosing Hospice.

Craig, my condolences with the loss of your Mom. What a gift you've been to her all these years of loving and serving her. Your sister sounds very narcissistic. It's important to forgive her because it will only eat you up inside. You need to grieve, cry, and simply get restored. In terms of what you could to support yourself, some have already offered ideas - good ideas. But perhaps they are not right for you. Do some soul searching and rediscover what really makes you joyful and pursue it.

One idea in terms of getting money right away is to sell things on eBay/Craigslist.

I pray for your peace, healing and provision.

Ramblingman .. my heart breaks for you. I wish I had enough words of encouragement to actually help. All I can come up with are some practical tips.

.. You may be able to find some help care agencies that will hire you to 'assist' some of the retired folks around town. Many cities have them .. they typically put you through a VERY short orientation, then send you out on jobs like, driving Miss Daisy to the shopping mall, helping Mr. Clean do some household chores, etc. No need for a CNA.
.. Contact your mom's primary care physician (who KNOWS how well you took care of your mom) for a referral. They might even know about some places where you might find work.
.. Consider volunteering (to make contacts).
.. Find a local caregiver support group for some social and supportive outlets.

I think it's vital, at this point that you take care of YOU.

It's so important that YOU get back on your feet. Personally, I'd completely ignore the outstanding bills, or if they were in your mom's name, see if you can get them removed, since she died, or get them deferred, without penalty until the estate is settled.

Get some sleep. Really. Take some long baths or showers, and feel the grief wash off you and down the drain. Open up all the doors and windows and allow death to fly out.

And keep coming back here to let us know how you're doing.

well my sister and her boyfriend snuck out the front door while I was moving my car back into the driveway after hospice left. THey loaded the things they wanted, took the food from the fridge and snuck out and left me to take care of all of moms stuff alone. i took care of our mom for the past 5-6 years and the thankls i get is getting stuck in this dustbowl pawdunk town. The funeral is important to me, for one i wanted to see where my mom is going, see her off, wanted to show my family im there for mymom regardless of what they think of me. not to mention i grew up there, its what i call home still. i moved out here for my mom and thats it, i dont like living in the desert, but noone else was offering to help my mom when her husband left her high and dry when she got sick , at first she stayed with her sister, but one day her sister literally threw her out on the streets with nowhere to g, so i packed my car and left colorado, i didnt even get to tell my girlfriend i was leaving until i got to grand junction colo. i literally left my life behind, and now my sister to show me how much it meant that i took care of mom sneaks out. heres the note she left on the counter "Craig, taking rental car back to colorado to start funeral arrangements that must be done 48 hours in advance, I left the key u gave me on top of moms bills on top of counter, i did not call sheriff for pickup of drugs, lisa"
tell me her blood doesnt have ice cubes in it. so here i am $250 to my name, 350 worth of bills, living in a town that has no industry and the highes unemployment rate in the country,, a house full of my moms stuff that i know is going to kill me every time i leave my room, no chance of getting out of here, no chance of surviving, the nearest big town is las vegas at over 75 miles away, this is a retirement town, theres no jobs here. I thought i still would be with my mom for years 4 weeks ago, we didnt talk about or worry about what id do when she was gone, my cna license from colorado is expired now, because since i was taking care of mom i didnt need it, i wouldnt change a thing about coming out here and taking care of my mom, but by doing so i really screwed my chance of living now. my sister has no idea how expensive it would have been to get a caregiver in here for my mom (she was mostly self sufficient, but memory problems similar to alzheimers and needed someone to help her with meds and cooking and things like that) or how much it would have been to put her in assisted living, i cant believe how cold she is, i really cant

I am so sad for you and with you. You will need all the inner strength you can muster for this one. A funeral is to comfort the living who did not spend the time with her they may have wanted to. You have something so much better than that no one and nothing can take away. I know it is hard when death comes sooner than expected, but from the point of view of the person dying it can be better than prolonged agony. So many things we have no control over. It's time for you to press the reset button on your life!

Rambling man, I'm so sorry about your mom. There are no magic words to heal your wounded soul, but you will always know that you gave everything to be with your mom. She's still with you. I firmly believe that we never totally leave those we love behind. Concentrate on knowing she is with you, now, even though her pain wracked body is gone.

As far as your sister and how you're being treated goes, that's sadder than sad. I'd think they could at least make sure you were able to go to the funeral. Families often fall apart when a core member dies and this seems to be the way it is with your family. You aren’t alone, as difficult as it is.

Do you have a religious organization you can turn to? Maybe someone there could help gather some money so you could go to the funeral.

A grief support group may help you, as well. While most hospice organizations are wonderful, some are not. It sounds as though you had a tough experience, so that support group – if they offer one – may not be the one you want. But if you ask around at counseling agencies, making it clear you have no money, maybe you'll find a group where you can share your pain. Meanwhile, please keep us posted on how you are doing.

Whatever happens - even if you miss your mom’s funeral - you did what mattered to her while she was alive. Your sister will never have that feeling. Keep that knowledge in your heart while you put your life back together. You can do that. You will.

Take care of yourself like your mom wants you to.
Carol

well my mom died this morning, I was there with her when she died. Ive been taking care of her for the past 6 years, I left my life behind in colorado 6 years ago to move to nevada to take care of her, I literally left everything on a days notice, my girlfriend that i knew since high school, my job, my belongings literally all i took was my car and what it could hold. No one else in the family would sacrifice anything for my mom so i did, I did the best i could. Now that she has passed she is going to be shipped back to colorado to be buried next to her grandparents, my sister and her boyfriend live there and came out to be here these last 2 weeks, so now after all is said and done and my mom is going back to colorado, here i am in nevada, no job no family, nothing. I thought my sister would help me to at least get back to colorado to attend my moms funeral, but no she doesnt care, now that my mom is gone i imagine i wont hear from anyone in my family anymore. IT kills me that i cant even afford to go to colorado for my moms funeral, I have enough money to pay the electric bill the water bill and thats about it. I didnt realize how alone I would be once my mom died, im disgusted with my sister as she made my mom sad because she blew my mom off for her boyfriend when she got here and my mom was still talking, it made her cry. i feel so lost and alone now, i just dont know what to do. I feel if anyone should be at my moms funeral it should be me, noone in the family even cared to visit my mom these past 6 years, and when we found out she has cancer none of the family came to see her until after she stiooed talking and doing anything for herself, which also made her sad and feel unloved. im so alone now, i dont know what i am going to do to even survive now. i just cant believe how fast it all went, 3 1/2 weeks ago my mom was doing everything basically, today shes dead.

Dear Craig, Thank you for your acknowledgement to those whose comments you found useful. If you want to send a private message to anyone, I think there are 2 ways to do it. One is to click on"Give a Hug" under their name, and you pick a little icon and also send a message. The other is to click directly on their name and you can send them a message - I think it's called a 'wall post' but I don't know where it shows up. If you want to see what is happening on your own account, the top right section of the screen allows you to check the activity on your account. Stay strong - you are doing great, and your Mom is so lucky to have you - sounds like you turned out the best of the bunch. One day your siblings may appreciate how you have changed and what you did for your Mom. If not, (I could be profane), just move on with your life, and your dreams.

could someone tell me how to respond individually to people on here, I mean i dont mind putting it here where all can see, but it would be nice if i could respond in person to some of these kind comments... but to answer the last 3 responses since my last post.. Perserverance, i wish i could just cry about my sister and aunt, but right now its all anger, but for my mom it does make me sad that she had to have them be that way. my aunt and sister both act like im a pos drug addict still even though that person has been gone for over 10 years, thats also where some anger comes, because if im so bad why would they allow me to be the one to care for mom and where were they. Im a good person, I really am and for them to treat me like they do does hurt, even when i was an addict i never stole and have never hurt a sould in my life other than myself. so I hope i get to the point you are and can contiune to keep from showing my anger at least until my mom passes. Once she does i imagine i wont have any contact from them anymore as they want nothing to do with me.

orange blossom, yes Thankyou for bringing up the advanced directives and insuring that they are in place. My mom and I have talked about it several times over the years and when she was told she had cancer and was still with it we got all that paperwork done and what options she wanted and didnt want. Long ago she worked in a hospital and nursing home so she too knows she didnt want and adcanced care to prolong her life. I also got a poa signed and we did a quit deed on her house, which she had wanted me to have the house and her car, but i put my sister on the deed of the house also because I didnt want my sisters feelings to be hurt when she found out thats what mom wanted. Funny isnt it that for how bad my sister thinks of me that i would care enough to do that, but my sister doesnt even know me now and honestly if she asked or wanted it i would let her have the house all together,, turns out she doesnt want it at all or half of it, but i told her id sell it and give her half the money when it sold..
regarding her care yeah i talked to the old hospice administrator today when they called asking why i was swithcing to another hospice, i told them because the nurses were rude demanding and didnt care to listen to what my mom was telling them or what i was telling them, all but one of the nurses whom i said was wonderful, but that nurse was a per diem nurse that filled in when they were short, she was really a nice lady and the only nurse that took the time to talk to us and explain stuff. she even was crying with my sister today when she saw how bad my mom was. they tried to talk me out of switching but i told them no that they mistrepresented themselves to me when they said they had nurses living in the town i do, and when my mom was in distress it took 7 hours for a nurse to get here and that was unaccepable. having worked in healthcare i know who the boss is and usually thats the patient, so when im a patient or my mom is a patient usually docs and nurses dont like me much, because i expect them to do their job right. most healthcare facilities hate it when a nurse or other medical person is the patient for that reason.
oh one last thing orangeblossom, yes the new er doc was shocked at how they were medicating her, and pulled all but one pain killer to be used as needed for breakthrough pain, he also prescribed it as a liquid so she could actually take it without choking on it,. I owe all of you so much for your help and just for listening, obviously im having some serious mental issues dealing with all of this and without having found this site i would be even more neurotic than i am now for sure., lol thank you so much
Craig

Craig, I do know how you feel about the family not visiting your mom. My MIL wanted to see her two younger sons very much this past year. Neither came to see her after her husband, their father, died last June. When she met with the hospice chaplain she did ask him to pray for her two younger sons. Near the end she did give up on them coming to see her that was sad, she stopped asking for them, she knew they weren't coming. She also wanted to see her sister. When she was in the hospital the last time she grabbed my hand and said urgently "call my sister and tell her she needs to come NOW! She was so sick, she asked for hospice that visit. Her sister did not come. Neither did her sons.

I felt so badly for her.

My husband is very angry with his brothers and aunt.

Side note- we were fortunate, the hospice group was the same people from the year before.

Craig/Ramblingman, BTW, I agree with your assessment that they were going overboard with your Mom's pain meds. That's why you were right to stay on top of them. Your Mom is so fortunate to have you as a son, and her best friend/advocate.

Dear Ramblingman (I ramble too): You have considerable experience in the healthcare field, so that is to your advantage. Does putting your Mom in hospice give them cartblanche to treat as they please? I don't think so. You have not mentioned if you have her Advance Care Medical Directive (HCPOA? HCP?-various names) or her legal POA. I just got through helping my Uncle (still mentally competent to make his choices) fill out the questionnaire to give me the authority under his Adv Care Med Directive to manage his health care when he is no longer able. The questions are very specific as to health care conditions and treatment options that he can make choices on right now while his brain is clear. The minimal care option allows him to choose only meds that will keep him pain free until he dies a natural death, and also if his condition causes excessive pain, to be able to increase the pain meds even though it may hasten his death. I am obligated to ensure that his wishes are carried out by the NH, Hospice or Hospital when the situation calls for it. So it seems if you do have your Mom's medical directive authority, you need to review the documents and see what you are allowed to do. At the very least, I think the doctors and nurses are obligated to consult you before they change meds. My Mom is in a Nursing Home, and as her Health Care Proxy, I was crystal clear from day one with them that I had to be called before they changed any medications. So bottom line, clarify what your rights are and exercise them.

Craig, I am so sorry for what you are having to go through with your family.
I so understand. You need to forgive your family for being narcissistic. You have served and loved your mom well, and God sees your care. He is mindful of what you've graciously done and are doing to make your mom comfortable. It is precious time with our loved ones as they decline, and I am personally grateful for the experience - as hard as it has been at times.

I've had to CONTINUE to forgive my siblings for their continued narcissism and neglect of my mother... It has caused me to cry several times - for my Mom!!! Even thinking about it brings tears to my eyes and I get choked up.

You are a good son. She is blessed to have you near.

Well my mom is back home from the hospital, the hospital gave her an iv for fluids so shes well hydrated now. They agree though that she is in no pain and doesnt need all the other stuff and the 50 fentanyl is as of now sufficient and working. She hasnt congnitively came back much though and i think I may have her for a day or two more, but its hard to say. The er nurses said maybe a day or two, but the hospice nurse said who really knows. Ive been taking care of my mom for the past 5 years and ive more come to accept that she is dying just from having to first thing every morning going in her room and watching her chest to make sure she is still breathing. I am having alor of trouble dealing with my other family members though who are here now, my aunt and my sister, I have so much anger towards them for not coming and visitin my mom when i would beg them too, a few months back my sister came to vegas supposedly to visit my mom, but when my mom went to vegas to see her my sister ended up leaving my mom in the hotel all night by herself and her and her boyfriend went out all night with some of his friends he knew that lived here. My aunt my moms identical twin sister was in germany when this happened, she lives maybe 4 miles away and has visited maybe 6 times in 5 years, when my aunt got back from germany it was right after we found out my mom had cancer a couple weeks ago, my mom was still walking talking coherent, when my aunt got back she didnt come see my mom for 2 days which really hurt my moms feelings, by the time she did come my mom was no longer able to do much of anything and never said more than 3 word sentences.. I dont know how to get beyond this anger towards them and dont think i can forgive them for making her feel bad as her last real memory of them.. well i need to do some things, just venting here iguess as i have no one to talk to about any of this..thanks Craig

I am so glad to have found this site, what a wonderful group of people, was expecting to hear lots of negative opinions about how im doing this. When i spoke to the other hospice and explained the meds they said that it sounded like she is over medicated, so long as she is not in pain. When the nurse from the old hospice was here today and told me she was upping her fentanyl to 75 i asked her why she was doing that. She told me because my mom is in pain, and I asked her if my mom said that or was showing any sign of pain, the nurse told me well her heart rate is 110 which indicates she is in pain. Well I bought a pulsox a long time ago and put it on my moms finger and her O2 was at 88 from the nurse moving her about and such, I adjusted her concentrator to 4 and after 3 minutes she was back up to 97 and her pulse was down to 90. I told the nurse that when her oxygen gets low her pulse goes up to compensate, that doesnt mean she is in pain.. the nurse gave me a look and said well she needs to be on 75 for pain. I just said well i disagree, lets see where shes at and how she feels after she gets used to the 50mg she just got upped to 3 days ago...well apparently she ordered 75s anyways as they were delivered a couple hours later.. I called the hospice main line and talked to another doctor other than the one thats supposed to be doing her case and he agreed 75 when shes not asking or saying she is in pain is not needed, also he said she was having leg cramps because of another drug she was prescribed by them that she shouldnt be on because it causes leg cramps in cancers such as hers.. It took alot of calls and 3 days to get ahold of a doctor at all let alone never heard from hers. regardless im glad im switching care, i used to work hospice as well as gero/psyche as a cna and long ago was an emt so im not entirely stupid about the care, but the level of service to expect is where im hung up, its alot different taking care of a family member for sure. will update soon when i hear back from my sister who is at the hospital with my mom what they say.
you all are really awesome and have already made me feel better about my decision. Really what do i have to lose by switching her...thanks again.

not all hospice groups are the same. I hope the new one respects you enough to listen to you, the primary caregiver. And yes they can be bossy. Told me my father who was in a hospice home and got considerably better, would not be released to be flown home unless he would immediately transfer to another hospice home. After trying to get them to agree to other arrangements, (he wanted to see his primary care doctor which would require hospitalization) with no results. I finally looked them in the eye and told them I would do exactly as they requested while making the arrangements with the flight crew for his transfer to the hospital. So I can understand your not being listened to....BTW Dad lived another couple of years. Don't give up on the concept of hospice, but find the right ones. They may be doing this because your mother is actively dying? Ask the questions and see if you get some answers.

I am surprised at how much they are upping her pain meds for no apparent reason. Last year when my FIL passed away with hospice care, they increased his morphine very slowly and his pain was intense.

Let us know how it goes, I am sorry that you are not having a supportive experience from your current hospice. Take care.

im not a fan of hospice anymore. they have such a high turnover rate that they must constantly scrape the bottom of the barrel to stay staffed. they have my mom on haldol which may be necessary but the increased risk of heart failure was never mentioned to us. they are making decisions that dont involve the family.

We have called them numerous times regarding this, and they say that she needs to be on the meds. My sister and I decided to call another hospice outfit and talked to them about it, after doing so we decided to take my mom to the er thus losing the hospice she is on and are switching to the other hospice. That way we get another opinion on her meds and what we should do. The hospice we are with currently told us they have staff and nurses that live inour town, when in fact they dont and the nearest staff is in las vegas over an hour away which I really dont think is close enough. The hospice we are going to switch to is Nathan Aderson and is much more established than the other which just started in my town a few months ago and actually isnt really staffed here like they said. Whatever happens I know my mother is dying, and if shes in pain well she will get the meds she needs, but i see no reason to sedate her now while she is pain free and end things now unless thats what is in the cards for her, which I hope it isnt, but can accept if I have to. will see what the docs say in a little bit/

Call your hospice 24 hour line and ask them. Sorry to be so short, but that will give you the best answer.