Anticipatory Grief and Death with Dignity

[csabados]

Anticipatory grief is a real thing, yet there are no support groups for it. I have asked at a couple Hospices and their grief support groups are only for after the passing.

Quickly, my mom is the one with ALS. Bulbar onset so she is still mobile, some difficulty swallowing but basically holding her own. She still lives alone and won't every admit if something is bothering her. Seems to be slow progression for now. Major complaint right now is she has almost completely lost her speech and she does tire easily. She is spending all her time and energy planning the when and how. She plans to use the Oregon law. She so wants it all to be over. She was so distraught when the doctor said her numbers all looked good. I think she wanted that 6 month number so she could get her prescription. She is so independent and not wanting to burden any of us. We have all agreed we support her and want to be there with her. She won't talk to me. She goes off and makes plans by herself. My biggest fear is not being there and I would not put it past her to disappear somewhere to die alone so we don't have to see it. That would be the worst for me.

Bottom line is she is going to die, hopefully, peacefully in her bed. I want so badly to SCREAM You don't have to live with the choices you make, we do. I support her choices, but I have to know what they are!

Only she knows when the right time is but the doctors won't sign the papers (2 doctors, 2 requests each, 15 days apart) until after they agree on a 6 month diagnosis. With her numbers still in the high 90% (one was 110%, it could be a while. Good news/Bad news. Such a double edged sword for someone who has no interest in getting on with living. I signed up to keep her off a ventilator and out of pain, not just because she can't talk or drive or wipe her own butt.

Sorry for venting/babbling. I'm upset and hurting, angry and frustrated... all that. I know I need to talk to her, to make the conversation happen or I will regret it and have to live with it. I always feel it's more about me. I have decided that it is about me too. I cannot go on without knowing I did everything I could. If she is never going to talk to me or let me help her or has no intention of letting me be there, I need to know so I can back off, not like I could ever do that. Question is what and how much of that do I actually say. Can I really make it any worse than it already is?

It's late. Goodnight and if you took the time for me, I thank you very much. I could really use a friend. Seems like you are all very helpful.

 

[gooseberry]

I would look for a counselor ir therapist who can do gruef work. My son and I both go. It helps us immensely.

 

[DreamsEnd]

I recently had lunch w/a CALS who had lost her husband 2 years ago. She told me she was welcomed in a bereavement group before her husband passed. It was helpful to her.
You might want to purchase Five Wishes and sit with her to answer the questions so she can explain her choices.
Also know that I am that kind of independent Mom fearing being a burden on my kids but what I REALLY want is for them to just show up and visit and just be with me now!
Sherry

 

[affected]

I feel a counsellor would be really appropriate so you can really let a lot of this out and get your head a bit straight before you do talk to your mum. A specific grief and loss counsellor I would think will really help you work through all that is spinning.

 

[Nikki J]

I don't know if anything on this page might help
http://www.ohsu.edu/xd/education/co...outreach/upload/Guide-to-Oregon-Resources.pdf

It seems that someone is probably specializing in counseling patients and families participating in "death with dignity " as it appears to me there are special issues to work through

 

[Barbie]

I think it would be worth while to write her a letter about your feelings. don't hold back--don't be afraid to hurt her feelings--just be very open and honest about your feelings. tell her how you feel and what you want. take your time writing it so you get everything out you want to say. right now it sounds like she is wrapped up in her own pain and she is not thinking about yours. be sure and use "I" statements and don't accuse, the point is not to cause a rift but to truly communicate your feelings. after she reads it the ball will be in her court. I am sure there is a lot going on in her thoughts and perhaps she thinks she is sparing you or is struggling deeply with this diagnosis.

sometimes it is easier to express yourself in writing than in person.

 

[4tloml]

I agree so strongly with Barbie on the letter. Taking your time will insure that you say all you want to clearly and completely. The process will also help you organize your own thoughts and feelings and slow the spin.

Having that letter in hand to read in her own time may lower defenses and help your mother really hear what's on your heart. When issues are so emotionally laden, it's natural to miss what one another is trying to say because we're so busy putting up defenses and formulating responses. Getting it written down slows that process.

That letter is also a good jumping off place for counseling. It would provide so much insight for the therapist to know where you are and what you need from them.

Will keep you in my thoughts. Glad you posted--please keep coming back to let us know how you are.

 

[affected]

Our palliative care provide grief and loss counsellors both while you are nursing a terminal person and afterwards.

The letter Barbie suggests I think is great, I think seeing a good counsellor first may just help you really get yourself straight on it all so you can communicate what you really feel and mean. Sometimes though writing it helps to do that too as you stop and read back and work out if you said what you meant.

 

[lgelb]

I don't think it's anticipatory grief you're dealing with, as much as not knowing what plans your mom has made. Realistically, if she really wanted it to be over today, she'd find a way to get morphine. So it sounds like she's got some other plan (or no plan) and you want to know what it is. If her lung function is normal, it could be a while before her life expectancy dwindles, or not. Are you her PoA?

Why won't she talk to you? Does that extend to anything or just plans for death? You can write a letter, but maybe gathering the family might have more impact. Maybe she is not communicating because whatever her speech generation device/method is, she doesn't like it? Does she have assistive technology support? Given the lack of interest in living you cite, what does she do all day? Bottom line, you could be in grief and limbo for some time to come, or you can pry open the lines of communication. A counselor might help with the former, but I think you need someone else (or a combination thereof, the whole crew) close to your mom for the latter. And, ironically, limbo tends to hold up grief. You can ping us any time as you work through.

 

[Gracious99]

From personal experience, my husband has also talked that he plans to end it, and won't talk to me about details because in our area it's still illegal ( under the circumstances it's just silliness if you ask me) and he doesn't want to complicate his ending with fallout for his family. Having said that, it is a terrible thing for me to think about him leaving this world alone, I want him to be surrounded by his family and know that his passing is peaceful and comfortable. I have a very difficult time not speaking my piece, and the other day my husband said, "Stop telling me that I can be with the family and that I don't have to do this, I have to, and I'm tired of hearing you tell me otherwise," so I said,"Really, so how would it sound to you if I just chanted 'do it!' Do it!' Again, silliness, but not at all.. So painful not knowing. So stressful to think that I'll come home one day from work and find that he's chosen to leave this world. Yet, I understand, I think I would do the same. So somehow we have to relinquish the control to them, they ultimately get to choose what's best for them, and as hard as it may be, we have to realize that for a disease that takes all their control away, one function at a time, at least they will be able to control their last moment to their choosing. I feel your frustration, and know that here you can say and feel what you need to get through, I hope what I've said helps you find a little piece in the unknown. Blessings to you
Grace

 

[lgelb]

CALS, this is such silliness, to talk about having to hope you don't come home and find your loved one gone. If you don't want that, you don't have to. Where did this idea come from, that because suicide or assisted suicide is illegal in most states, and cumbersome in the others, that PALS can't have a good death, surrounded by what/whom they love? Poppycock (that was a very restrained noun, I assure you). Please stop scaring each other.

The cases you seem to think apply took place in hospitals, they involved disconnecting life support, there were not directives/health care powers of attorney signed in advance, families were feuding, etc. None of that need apply to you and yours.

Many of us know, from personal experience, that all it takes for a peaceful death is a bottle of morphine (such as any physician can prescribe for indications such as air hunger) and a caregiver who cares. Does that not describe you?

If you want the good death you say you do, then it is just a matter of "titrating morphine to comfort" by mouth or tube as air hunger and/or pain progress. If you're not in hospice, and the patient dies at home, as was Larry's case, the paramedics will come to pronounce death, and possibly (I have posted about this at length, so you can search) they will want to see the advance directive that does need to exist.

Then, perhaps, as in our case, the police will come and do a report, then call the funeral home/crematory/wherever you want the body to go, and release it. I'm sure this varies some by city, state and country, but I'm also pretty sure it's not going to vary to the point of putting anyone behind bars, and I know of no such person, as long as (1) the intent, uniformly expressed to anyone who asks, is to titrate morphine to comfort, (2) there is a duly signed, witnessed and notarized advance directive and health care power of attorney and (3) there is a doc somewhere, preferably s/he who wrote the morphine, who signs a death certificate attesting to ALS as the cause of death.

It occurs to me, Oregon, that maybe your mom thinks using the DwD law is the only way she'll get a pain-free death. This could be a lack of knowledge issue that should shape the conversation you want to have.

Now, obviously since this scenario presumes someone is experiencing air hunger or severe pain or another appropriate indication for morphine, it's not as likely (though not impossible) for someone who is in early stages of the disease. But since the course of the disease varies and there is no agreed-on biological marker for progression at present, physicians must largely rely on P/CALS for reports as to symptoms and thereby prescribe appropriate therapy.

A good death is the last best thing we do for our PALS, and ourselves. It does, like most important things, take some forethought and planning. So P/CALS, face each other and talk about this. Prepare. Stock up. And then turn toward life or death, as ye will.

 

[Gracious99]

Very powerful and comforting reply, thank you. To tell the truth, this is the most pressing thing in my head right now, and it's the hardest topic to discuss with my husband. It doesn't seem like any discussion is adequate to quell the anxiety and uncertainty I feel, and I know my pals is suffering the same. i will search for your previous posts and read up a little more on the topic. Thanks

 

[lgelb]

It can be transactional more than super heavy-- shall we get this done, that done, so we'll be prepared? I think most CALS "get it" earlier than they think. You don't need to force the PALS to spell it out if you well, know and they know you know. You can proactively say something like, "I will make sure you won't suffer." You have to mean it. There is no delegation on that.

The key is for the PALS to know that the CALS will ensure that wishes regarding the last part of the journey will be followed, and for both to make sure the paperwork needs thereof have been addressed beforehand. If a PALS can't sign papers, of course, s/he can substitute speech, a nod, blink or whatever for the notary.

Most PALS here have been able to articulate those wishes in some way at the right time, and/or have been "understood" via years of interaction.

 

[Atsugi]

Laurie gives excellent advice.

In our case, we did not call 911 or police. They were not involved. We called the funeral home at 9pm, and they came and took the body away. No muss, no fuss. We were under hospice care at the house, so I suppose a natural death is assumed. Florida.

In the family deaths that I have been involved with in recent years, the most important things were having an understanding, experienced nurse and a bottle of morphine.

It also doesn't seem to be necessary to have a long, pointed discussion in most cases. CALS generally know what their PALS want. I consider it our duty as CALS to simply provide, as much as possible, the kind of life--and death--that we know our PALS wants.

HOWEVER, I would also ensure the legal papers--Advanced Directives--are in place. We had an Elder Law Attorney visit us to put these things straight. She "listened" to my wife's desires through the text-to-speech box and blinking, and set up the DNR and Living Will accordingly.

Google Five Wishes. That template gives an excellent and thorough discussion of end-of-life matters to act as your guide.

 

[Barbie]

My understanding is that if you are with hospice, the funeral home takes the body. there are no police involved. that is what I was told when we were on hospice, and what I saw when my mom was on hospice and died. If a person dies at home and they are not on hospice, then of course the police must be involved to ensure that the death was expected and natural. I really don't think anyone needs to worry with an ALS diagnosis that there will be extensive investigation, after all anyone can commit suicide with or without family present. if the pals can't do it alone, then the diagnosis and the paperwork as Laurie noted will clear up any investigation quickly. I don't think there should be any concern on any pals or cals mind about that.