Anyone had to bring in hospice against mom's wishes?

[SC7454]

I really don't know what to do at this point. My mom has been told for three weeks now that there is nothing more they can do for her and that hospice is the next step. All she thinks is that everyone wants her to lay down and die. In private, the Dr. told me she has less than 2 months left. She's too emotionally fragile to hear that, trust me. She can no longer walk on her own and even with me helping her and using a walker, she continues to fall in her apartment and can't make it to the bathroom, etc. I clean her up, etc. She blames it on the chemo and says 'can't they give me anything else?' There is nothing else, except some really strong ones that would kill her, she is so weak. Her boyfriend and I are her only caregivers, and I don't know what to do. She keeps saying that she's not ready to die and she's in such complete denial she's told me she will hate me the rest of her life if I bring in hospice. She says she won't let anyone in her house. But yet, I've known all my life that my mother always wanted to die at her home if something like this ever happened. She needs a hospital bed, she needs a portable toilet, etc. The Doctors can't talk to her either, she just gets mad. I just want to take care of my mother, with some help. I'm practically living here now (every day I work from here to help her). I don't want to put her anywhere, and she can't see that. She's being so mean, and I've tried every way I know how to exlain this to her. You name it, I've done it. How do I just walk in with hospice, knowing that she will tell me she hates me. And she will say it, she's always been extremely unpredicatable mentally. We arent't keeping anything from her, the only thing she doesn't know is the less than 2 months thing. She is having extreme pain too and refuses the morphine pills until it's really bad and then they don't work as well. Please give me advise. I can't do this on my own anymore. I had to watch her crawl on the floor yesterday because she wouldn't let me up. I feel like I'm losing my mind. I called a cancer support group in our community yesterday and they really didn't offer much of an opinion. I feel so lost.

[EastCoastLadi]

First of all I am so sorry you have to go thru this! Your mom is frightened and of course feels all alone even w/ you and her bf there. My first suggestion would be is to talk to the social worker at the cancer center/hospital she has been treated at. They can help you make all the arrangements or at least point you in the right direction.

I know when my dad came home to hospice, he wanted to be home, he didn't want to die either and felt being at home would make him better, unfortunately it didn't. But my dads' hosp. soc worker got us all the info. and the bed and medicine and the hospice nurses, social workers, home health aides were set up in a matter of a couple of days. Also we had a pharmacy that would deliver by orders from dr. and nurses any medications, syringes, bandgages, creams whatever he needed it would be delivered.

Also, are you her health care proxy, because if she is getting to the point where she is unable to make up her mind, you or whomever is the hcp will have to do it, and please if you don't have one. DO IT NOW!, even if your mom is in denial, just tell her you hope not to need it, but just in case, if she had a "moment" ( to put it lightly) that you would help her make her decision, and let her know or talk to her about what her decisions would be....ie. to fight on, more meds....ect...

Your mom doesn't hate you, remember you always hurt the one you love......she loves you..she doesn't want to hurt you....and pushing you away is her way of doing so.

Please I'm praying for you and your mom.....please keep in touch.

Grace

[SC7454]

Mom has signed a Power of Attorney for her health care, but refused to fill out the part that really mattered (living will, dnr, etc). It's like she's in her own world. I try to get firm with her and she just wants to do battle, it's like it baits her into argueing and she won't stop.

[Sheri]

My heart just goes out to you. What a tough spot to be in. I pray my Dad never needs the services of Hospice, but if he does, I may have the same battle. The term "hospice" carries the connotation, you're terminal, this is the end. Perhaps you can initiate the hospice conversation by telling her she needs supplies and help to regain her strength. Refer to them as home health care and her agreement with Hospice can always be revoked and her treatment can resume. She needs a break from chemo, she needs to focus on regaining her strength to resume a treatment plan.

Research the net for success stories when hospice was cancelled and treatment was resumed. I'm sure they are out there! She sounds like a fighter, tell her she has to give her body time to heal for the next step. I wish you luck and prayers to your mother.

[ma's kid]

I am so darn sorry that you are going through all of this..

Please contact the social worker as I know he/she will be able to help.

Maybe you could call Hospice and speak with one of the nurses and they could advise you? I am sure they have encountered similar situations like yours before.

My dad died of colon cancer a few yrs ago and we did call in Hospice..we told him and it was the truth that Hospice is not an automatic death sentence and that Hospice is as much for the family as for the patient. We told him that Hospice would be a good source of support for all of us.

Oh, my heart hurts for your pain and for your mom. She is scared and please know that she does not hate you, she loves you and is just clinging to you..

Please keep posting and remember we are here for you...pm me if you need anything, ok?

Libby

[Suzie Q]

My mom was not ready to accept Hospice, either. However, she was at a point physically where she had to be in my home, and with a 2 story house with bedrooms upstairs, it made financial sense to get Hospice in and have all the durable medical equipment taken care of by Medicare. But most importantly, WE needed their help.

So my siblings and I decided to call hospice for an appointment. The social worker and nurse came to my home knowing she was in denial and they did a wonderful job in their appeal to her. They placed emphasis on how helpful it would be for me, as her primary caregiver, to have them on board. She still didn't like it, despite all of us emphasizing that. So the social worker asked her to give Hospice 2 weeks. If she didn't like having them come in, she could tell them to pack up & leave. (I'm sure they knew how close to the end she really was.)

In the end, she consented. She passed away 9 days later, peacefully, and happy to not be in a facility. I know she would have rather been in her own home, but it wasn't possible. We are all so glad they handled things as they did, and convinced her to accept their help.

Of course, your mom may not be so easily swayed. But she has to be told that the alternative is a home, because you and her man-friend cannot continue like this. She needs a commode, bed, etc, and all this is coordinated by Hospice.

I guess if she totally refuses, you could go with private nurse aide or LPN help to get her bathed and give you relief for part of the day, but that would all be out of pocket expense, and you would have to do the legwork yourself getting all the equipment ordered & delivered. That way she would still get some level of care and you would get assistance, but the "H" word would be out of the conversation, and perhaps she would be less resistant about her status . Maybe even accept that she is at this point and death is nearing.

I completely relate to what you are going through. Even with Hospice care, you will still be doing most of the caretaking, but you will have resources available to you, and just a phone call away. Still, it's so hard to do this!

Best wishes,

~Karen

[Treebywater]

I will try to do a search later--It seems someone else has gone through a similar experience...

What I remember from that discussion is perhaps present the option as less of 'hospice' but as 'home health.' Let her know it's more for YOUR help as the caregivers than for her.

And let her know that some people really wow hospice organizations and get so much stronger under their care that they can actually sign off. That may sound like a long shot... but it's still a little hope to grab onto.

[Treebywater]

There is a thread in 'General' called "How to Tell About Hospice" that you might find helpful. You might scan through the pages til you find it. If you can't, PM me, and I'll send you the posts I thought might give some insight or help.

[cindy0519]

We struggled through this with my Dad. He was initally told in April that he was out of treatment options and should look into hospice. He wanted no part of it!! Just saying the word "hospice" made him feel like we were all giving up and just ready to let him die (which of course we were not in any way shape or form). We went through a stage where just raising the subject made him very vocal and very angry. However as things progressed and he became sicker we(he and I)finally were able to have a VERY frank discussion (toward the beginning of June)about how difficult his care was for SM to handle on her own (she was talking about nursing homes at this point actually) and how if he didn't allow me to return to Az to help and allow us (SM & myself) to find someone (hospice, home health care...whatever)to assist/support us as well as him -- this was going to be a long hard road...one none of us needed/wanted to endure. The conversation we had that finally "worked" focused on what I believe were THE two critical issues for my Dad:

1.) Hopsice does NOT mean ANYONE was giving up. It just means that rather than focusing on treatment and all the ups and downs that come with that on a day to day basis... our focus was going to change to one of "living life as it is...for each moment we had, no matter how long or short that might be." No more trips to the doctor, no more being stuck with needles, no more hospitalizations, no more trips to the drug store -- just focusing on being with each other and savoring each and every precious moment HOWEVER WE CHOOSE with the assistance of hopsice to make sure that he was comfortable (that his pain was well managed) and that we had whatever we might need to help to ensure that we could make him comfortable at our disposal.

2). If he got into a hospice program and it did not work for him... he could AT ANY POINT ..say he was done and no longer wanted to participate. This would include if he regained strength and was ready once again to tackle active treatment options or if he just plain didn't feel like this was working for him. I had to make him understand that HE ALONE was in charge and being in hospice care would not take away any of what little control of his life he had left. There would be no democracy and no dictator other than HIM... if it didn't work for him we would simply say "no thank you" and move on to the next option and we WOULD find a "next option".

All of this said.. I have to tell you that my Dad verbally agreed to hospice when we had this conversation, but not to immediately calling hospice. He said "not right now, but "If" I have to go back to the hospital..then I will sign on with hospice." I let him know that I knew this was not an easy choice for him to make..but this would not be a journey he would take alone we would all be "along for every moment/breath of the ride" holding his hand and loving him with all our might. I think he also needed to hear me tell him that, in that instant, in that situation... being there to help him was THE most important thing in my life - it was where I wanted to be and more importantly where I NEEDED to be...unless of course he didn't want me there. To which he smirked and grinned and said "I didn't say that." Throughout his illness I had often been the only person that he would discuss things related to lung cancer/death with. He refused to talk to any of my siblings about these "hard to face" subjects and often would not discuss them in much detail with SM either. So these types of convesations had become much of a norm for the two of us and I knew that the silly grin and response was saying...I couldn't do it/face it without you but I need to hear you say it wasn't a burden for you to be here.

Unfortunately 10 days after this very conversation - we did indeed return to the hopsital, but only for a referral to hospice..no agressive treatment. Dad entered a hospice inpatient facility(that was an actual house converted to a hospice home) for what was supposed to be 3 or 4 days to stablize him. He spent 10 days there before he died..but it was 10 days I know he truly enjoyed and was a peace with. They did an EXCELLENT job of making him (and us for that matter) comfortable and we did have the opportunity to make a few final "good memories" - that my family and I will treasure forever!

I know how hard this subject is...my heart breaks for you! I hope that you are able to find a way to have a "good heart to heart" with your Mom about hospice as I finally was able to do with my Dad. It truly did bring us both some much needed peace!

Thinking of you and sending many prayers for your family.

Cindy

[mamasbabygirl]

Oh my heart just breaks for you too. I do want to reiterate that your mom's mental status is maybe compromised with her brain mets and any drugs that she is taking to combat the swellling (thus the arguing and combative attitude). I wish I could help more. I think Linda661's mom refused hospice too. She may be able to help-she is an excellent resource about so many things-PM her.

[Nick C]

Wow, hate to be so eloquent, but this disease sucks.

Here is the deal. With my mom, we told her about hospice and said lets do it now, so YOU can interview people...then we'll tell them to go away until you need it.

In your case the "care given" can be the "interview" as far as your mom is considered.

The difference was, my mom was "excited" about the idea of home hospice and getting them involved, as it meant she could stay home.

We never got to need hospice, and mom passed suddenly, but maybe you can sell it as enabling and empowering rather than the "throwing in of the towel"

I don't know if any of this helps.

[prairiecrow]

I'm afraid I don't have a lot of advice to offer, only empathy and verbal support. I think you're a hero just for sticking it out this long, and know that you'll do what's best for your mother even if she doesn't recognize it herself. And also what's best for you! If you wear yourself into a nervous breakdown, you won't be able to lend her any support at all...

Please keep us posted. Thinking of you, and wishing you strength and peace,

Laurie