At the end and have some questions

[taminator]

My mom was moved to an in-patient hospice yesterday. She had developed pneumonia and IV antibiotic treatments weren't working; she just continued to get worse. Over the past few weeks she got to where she could not even use her Dynavox to communicate. So we haven't been able to communicate with her at all during this latest round of medical problems. Anyhow, things just went from bad to worse and here we are at the end.

She's on massive amounts of morphine and Ativan but she kind of wakes up about once an hour and starts crying. Also, whenever anyone talks to her she starts crying. Do you think she recognizes us? I can't help but wonder if she understands what all is going on. Surely she has to know how severely sick she's been the past few weeks. Every time the nurses give her the morphine she starts crying. She was also doing this while in the hospital being treated for the pneumonia. She would not want any pain medicine but if she went without it she'd just moan very loudly for hours on end. So we've gone back and forth about is she really in pain (which she has been from day 1 due to some other medical issues) and does she need all this morphine?

My husband lost his father years ago and said when it got to the end and he was on so much morphine he did the same thing. I guess I'm just worried she thinks we've given up on her. I've worked in healthcare and I know medically all the signs are there and what is going on. And I'm questioning if we've made the right decision leaving the hospital and going to hospice.

Thank you in advance for any guidance.
Tammy

 

[LornaDoone]

I can't even imagine how hard this must be for you. Can you get a physician to evaluate her? Is bringing her back to the hospital for evaluation a good idea? Not sure how it works with your hospice.

There must be something they can do for her so she's not so upset eh?

 

[taminator]

Three different doctors (ALS doc, Neurologist and Critical Care doc) said there is nothing more they can do. She'd been in the hospital almost the entire month of January. Got discharged, then went back to the hospital after being home for 6 days and was diagnosed with pneumonia. Doctors didn't think she would make it through this past Tuesday night but she keeps hanging in there. But the chest xray just looks horrible. Almost entire left lung is full.

They said one of the medicines would "make her forget" so she'd be less stressed. I know other people have said their loved one cried constantly at the end. I've never experienced this before so have no idea what to expect.

 

[AKjo]

Have you told her what is happening? Tell her you love her and will miss her and give her permission to go. Is she crying because she doesn't know what is happening and cannot ask? I was with both my brother who had pancreatic cancer and my mother who was 93 and maybe had a stroke, when they passed. It was peaceful for both.

This must be so so hard for you to see her struggling and crying. Sing to her, comb her hair, hold her hand - anything that will let her know you are there and loving her. Reassure her that you will be alright. It must be so frustrating for her that she cannot communicate. I will be praying for comfort and acceptance for you both.

Blessings,
Jo

 

[lms9258]

Dear Tammy,
In my humble opinion, I think it is better for your mom to be in hospice--they are supposed to be knowledgeable about what happens at the end--especially the agitation she seems to be experiencing. Before trying to give you any type of guidance, I'd just like to say that the hospice staff is supposed to be educating you about the dying process! Regarding the morphine--yes it is necessary--not only for pain, but to help with breathing issues, and to make her less aware of what is happening. (As I think about how things went with my dad--your hospice staff should be WAY more on the ball regarding the medicine issues--my mom's nurse always "suggests" morphine). They should be explaining that the morphine is being used for comfort care--not just pain. I think it made my dad agitated while he was dying, and wanted them to give him a sedative--not sure if they couldn't--they never told us why they didn't
I experienced the same type of situation your going through when my dad passed. At that time, I really didn't know what I do now, because we now have home hospice for my mom (not the end yet). They gave us a book that explains what may or may not happen. They also gave us a pamphlet, the process can be found on the Internet, and I experienced it first hand.
Some people do not necessarily realize how sick they are, and that they are in the process of dying. From what I've read, this happens sometimes when a person is fighting death, has "unfinished business" or is really afraid of dying. I think many caregivers (family, friends etc...), are uninformed about the dying process simply because the medical community doesn't like to talk about it until "the end", if at all. In the case of ALS, this should be discussed very early on, so that loved ones are not in the position you are now.
Furthermore, some people who are close to dying may need "permission" to go, especially from their children. They need to know you will be ok, and you understand that she is tired of the fight. If she is religious, and believes in heaven, you can tell her--if it's so--that she will be with her loved ones that she has been missing, and will be in a better place with no more suffering. Yes she knows who you are, and that you are there. Speak quietly, and not all stressed out--hearing is very sensitive, and is the last to go. So just tell her how much you love her, what a good mom she was, say good-bye--and anything else that may be pertinent to letting her go. (I've learned how to do this, but know this will be sooo hard when our time comes, I love my mom so much!).
Sorry this is so long. And I'm an extremely slow typist, I started at about 10:45p.m. WOW! That's slow.
I'm so sorry for the pain you're going through right now. I really don't think she feels like you've given up on her, it sounds like she's very sick from what you wrote. It's nearly impossible to be sure your doing the right thing, I go through the same thing everyday--caring for my mom 24/7.
Take care,
Laura

 

[TedH5]

I do not have any insight to offer you but I felt compelled to let you know I will be praying for you.

 

[SueG]

Hello - just wanted to second others' advice about holding her hand, telling her you will be OK, and giving her permission to die. My dad held on almost a week after the drs said he should have gone (cancer) and when we figured this out, I sat down with him and though he had been unresponsive for days, told him how great a dad he'd been, but now he'd done all he could and though we would miss him we would do fine... he died 20 minutes later. There may be other things going on with you mom, but this can't hurt. I wish you both comfort and peace.
Sue

 

[laurel]

Tammy I am so sorry to read about your mom. As a retired nurse, one question I have is whether the morphine may be causing some anxiety and agitation. That sometimes can happen, and it would be worth asking the doctor to substitute another drug--perhaps methadone. We all respond differently to medication and I have seen agitation from morphine in those who are dying. All the advice about holding her hand and talking to her is important too. Blessing to you and your mom.
Laurel

 

[LauraA]

I have to say, the post from Laura seems to be very accurate from everything I've read. I am my father's caretaker and he is the end stages of ALS and I read alot about "the end" and the process of dying. I hope your mother finds some comfort in the words you express to her. You will know what makes her feel better. There is NO more difficult thing in the world to do than to watch a loved one die. My thoughts and prayers are with you and your family. May God comfort you.

 

[taminator]

Lorna, Jo, Laura, Sue, Ted and LauraA: Thank you all so so much. We've been sitting by the bedside holding her hand, talking to her, brushing her hair, etc. I know we've all told her over and over that we love her. Not sure if any of us have said it's ok to go and we'll see ya on the other side. Guess it's time.

I don't think she has ever made peace with this disease or fully accepted what was coming. I know she understood what would happen but understanding and acceptance are two very different things. She has fought this the entire way. But this has been typical of how she lived her life so it was to be expected. When she was diagnosed last March the doctors told her typically most people live 3 to 5 years after diagnosis so this is what my parents expected. Well, hers progressed very rapidly and I'm not sure they really had time to accept how fast everything was moving. Maybe dad was so focused on her day to day care there wasn't time to really step back and look at the big picture.

Don't want to be critical of the care she's getting because I know emotions are playing a huge part in all my feelings at this moment, but I have not been impressed with the hospice center in their guidance for our family. There's been very little counseling from them. When we got her to the room all the nurses did were come in, help her get situated in bed, took vitals, gave meds and that's it. Or at least that's all I remember. Didn't see the doctor until the next morning and she wasn't very helpful.

Thank you all again for your guidance and for listening. It's been cathartic to get some of this out. And hopefully others will read all this and it helps them. I know I've scoured these boards and learned so much from others. It's been hard to get on here at times because it's just been so much to deal with. I knew some about the disease but learned what happens in the real world from you all here, so I had a good idea of what all was coming. It helped tremendously in that I had a sense of reality about it all, thanks to everyone here.

I say a prayer for you all also.

Sincerely
Tammy

 

[taminator]

Tammy I am so sorry to read about your mom. As a retired nurse, one question I have is whether the morphine may be causing some anxiety and agitation. That sometimes can happen, and it would be worth asking the doctor to substitute another drug--perhaps methadone. We all respond differently to medication and I have seen agitation from morphine in those who are dying. All the advice about holding her hand and talking to her is important too. Blessing to you and your mom.
Laurel

Laurel I will ask about this. Thank you so much!

 

[laurel]

Tammy when my mom was dying she never accepted it either. She was always a somewhat discontent person thinking life had short changed her, and spurned religion to the very end. I talked to her hour after hour and told her it was okay to let go, that she had done her best for her family etc. But she remained scared and just didn't want to die. In contrast my dad was accepting, and went peacefully. In my experience, happy and content people sure have an easier time with dying. Lots of love to you.
Laurel

 

[Pat Paine]

dear Tammy,
I am praying for you, your mom and family.
blessings, Pat

 

[LornaDoone]

This breaks my heart. I know my time for this will be coming soon as well. Lots of love to you and your family.

 

[taminator]

This breaks my heart. I know my time for this will be coming soon as well. Lots of love to you and your family.

I know. I am so sorry. I felt so bad asking my questions because I'm having a hard enough time facing this as a family member. Can't imagine what you or my mom are facing. But I knew no one else could give better guidance than someone here.

Wish mom and I would have taken the time to talk to each other more about things. Feel like there's a lot left unsaid. But I know she loves me and she knows I love her so it's all OK.

Lots of love to you and your family too and thank you! How wonderful it is we have a place to come for support. I've learned so much from everyone here and feel I was so much better prepared to deal with everything. So I will smile now.