I don't know what to do any more

[TGB1]

Hi All,
Don't really know where to begin, so I'll just jump right in I guess. Some of you know my situation from my earlier posts but I haven't been that vocal recently because I'm too tired and overwhelmed. My mom (87 and diagnosed with bulbar onset almost 2 years ago, had symptoms at least 3 yrs prior to diagnosis), got her feeding tube immediately after diagnosis. My 24 year old niece moved in with her so that someone was there overnight, and I was with her every am for her feeding, my sil did her afternoon feeding, and my bro or a paid caregiver was with her in the evenings until my niece came home and did the night feeding. My mom was still strong and walking around with her rollator, and was able to be alone for a few hrs. between our comings and goings. She had pretty much lost interest in doing much of anything, but would still come to my house every weekend or so just to get out. I should mention that her mental faculties were starting to fade a bit during the last couple of years, but we were in a routine that was relatively comfortable for her and she was in her own home. We went on like this until just this past August, when she fell out of bed and ended up having to have a partial hip replacement. She spent an horrific week in the hospital (both my bros were with her because this happened the day I left for vacation - crazy but true), from what they told me just spaced out most of the time and moaning incessantly from pain, discomfort and confusion. I come home the day she gets transferred to a rehab facility, and that's where we are now after 2 mos of hell. Her physical rehab went as well as it could (I was with her every day for all of it), but mentally she is simply not coming back to where she was before the fall. Her rehab ended a month ago, but we made the decision to keep her in the nursing home because honestly its the first time in the past 2 years that I feel like we are getting some help with caring for her, and she could never be alone at home anymore. I am still with her every morning, but she is moaning almost constantly and smiling hardly at all. A HUGE part of me wants to stop her tube feedings, but I am torn to pieces with making this decision. My brother here agrees (I think) with this, he just doesn't want to be the one to make the decision, and my brother 3000 miles away is reluctant. Don't even get me started on that. I don't know if I should push for this or if its redundant, I mean I know shes obviously dying, shes starting to get weaker and her mind isn't all there, but I think that she could go on like this for quite a while, several mos or even more, and to what end? The disease is going to keep marching on, and she's suffered so much already. I honestly didn't think that I would get such a mixed bag of opinions about stopping tube feedings in an 87 year old als patient, but this has been a real eye-opener. I guess I just want opinions from people who get what this disease takes away from a person, because in the nursing home they don't see my mom as a person with als, they just see her as another old person who can't eat, can't speak, and is losing her mind.

Sorry for such a long post and thanks for listening. You are the only group of people who can ever truly understand the profound sadness that I have felt for such a long time now.

Trina

 

[Graybeard]

That has to be so hard for you; sorry.

I heard one solution:

Feed the person only when she asks to be fed.

 

[Janie H]

You poor thing! That would be a hard decision to make and it doesn't seem like the brothers are any help. I will pray that you do what puts everyone at peace.

 

[cheerleader]

Trina, feel overwhelmed just hearing about this! In times of hardship, sadly families can split or pull together. Will hope yours reaches consensus.

 

[Nikki J]

I am so sorry. I agree with Graybeard if you can figure out how to do comfort feeding and hydration only. that is actually something I am trying to word in my advanced directives. At the very end when things shut down there is not supposed to be hunger/ thirst but before there might be? Could she communicate that? What it sounds like you don't want and she would not either is the feeding to keep up weight. What is the staff saying to you?

 

[JimInVA]

Perhaps you can push for the doctor to provide some capability to care for the pain. And perhaps, in doing so, she'll be calmer and more at peace. As a caregiver, every hurt from our PALS seems to be magnified in us. It is at those times that I find decisions to be the hardest to think through and make. Her calm may very well help you determine a best path and course of action. I'm sorry about the brother who is looking in from afar. It is virtually impossible to understand when the situation is only "heard" (from descriptive conversation) versus being "experienced" (in the raw brute reality of actually being there).

In addition to ALS, you have the challenge of age and the terrible pain associated with hip related issues. It is one heck of a terrible combination for your Mom (and you) to have to deal with. Keep talking to us and we'll keep responding. Perhaps something that one of us offers will be just what you needed to hear...

Jim

 

[Barbie]

Oh Trina, I am so saddened by your post. what a horrible situation for you and your sweet mom. I am not a fan of nursing homes but I know they are needed often. You are facing terrible decision. have you talked to her doctor about more pain meds? As much as it takes!
how about hospice? maybe it is time. I think that they will work with patients in homes. perhaps getting rid of the pain will bring her peace and help the end come--it sounds like that is what you want for her and think that she would want too. I understand. how is her breathing?

Please stay in touch with us--we all love you and are here for you holding your hand as you face this monster for your momma.

hugs to you

 

[affected]

Trina thank you for sharing with us when this is so difficult. I can't imagine watching any person I love going through this extra torment as if ALS isn't enough.

First does you mum have a living will or advanced health care plan? Do you or one of your siblings hold her enduring guardianship? This would help give some good guidance to decisions and legal authority.

I so agree with others, I don't have anything brilliant to add. I would be concerned about her level of pain, do you think she is moaning from pain? Can she communicate much with you at all?

What is her breathing situation?

Maybe you and your brothers can talk with her doctor about where this is all heading with her and best strategies that really consider her?

I'm just so sorry for you and for your mum, no one deserves to suffer like this.

 

[affected]

grrrrrr mod

 

[Nuts]

Trina, I'm so sorry for what you are going through. I nursed my 77 year old mother back from a broken hip--I can't even imagine going through that at 87 with ALS and all that it brings to the situation. Having been thrust into the caregiver role, it infuriates me when I hear about family members who are comfortably seperated by thousands of miles judging or trying to dictate treatments. It sounds like you have gone to great lengths to care for her, and I hope you can find a place where everyone is comfortable with the path you chose in the future. You are right--we do understand and are here to listen.

 

[MaxEidswick]

I can't contribute much, except I feel your emotional pain.

 

[lgelb]

Trina,
Everyone has had good thoughts -- use her wishes as a baseline, document how far things are from those wishes. If she doesn't have directives or never said anything, go by what she said about other situations, what she believed foundationally, etc.

And then there is, what is the current prognosis -- talk w/ aides and nurses, not just the docs. The staff knows. And things like urine output, nutrient intake, pulse ox, temp, coughing, air hunger...

But still, if what is happening would not be her wish, it should be changed, however long everyone thinks it will be.

I would also have an outside geriatrician/pharmacist evaluate her meds. Often when people go into a SNF from an acute care facility they are kept or put on drugs that sedate, agitate, confuse, etc. and often interact. This can obviously cause some of the changes in people like your mom. And then when pts moan and are agitated, they sometimes get more meds and that just makes it worse. Sometimes we taper all off and start over. This may not be the case for your mom, but something to check.

And of course if she isn't getting enough calories/nutrients, she isn't going to be able to cope w/ the stress of a new place and a deteriorating body. But whether you continue tube feeds or not, it would be good to know if she is at her best right now, and to see what it is if she's not.

You are carrying the load for your family and shouldn't have to, but kudos to you for doing it.

 

[affected]

lgelb is totally spot on!

 

[TGB1]

AAGH! I just typed a lengthy reply and I think I lost my internet connection! I'm going to wait and see if I can find it anywhere, or if it may show up, before I retype. Thanks to all of you for responding and I will post again tomorrow. Darn it was good too!

Trina

 

[Barbie]

oh I hate when that happens!