Hello Rosie,

My mom is home now in a hospital bed with hospice care only coming a couple days a week. I am worried my dad cant handle it because it is so much to do, so we are looking into getting a nurse. Does insurance or medicare usually cover a nurse? I know hospice is covered. She is not doing well at all. A lot of pain and discomfort. I am not going to work tomorrow and am spending time with her so I will look into getting the portable suction for her...You are right about getting it moist fo rthe suction to work..But....She is dry and when we try to moisten her mouth, that is when she gets in excrutiating pain...Thanks Rosie again!
Love
Stephany

Stephany,

I can't believe they sent your mom home before getting her pain under control. Have the doctors said why they can't get it controlled? Please make sure the hospice people know how bad it is. They should be able to help.

I'm sorry I can't help you on the question about a nurse. Every insurance is different and I don't really know anything about how medicare works. I guess you would have to call the ins. co. Actually, the hospice group should have a social worker or coordinator who should be able to help you with stuff like that. Our hospice also had volunteers to come in on days that the nurse didn't. We never used them, but I know they were available. Again, there should be a hospice coordinator who can help you with all this. Please don't hesitate to use all the services they provide. You and your dad will quickly wear yourselves to a frazzle trying to do it all yourself.

I want to add something to one of my previous comments. I said I thought Heather would have lived longer if she had better nutrition and if the tumor hadn't moved into her spine. The reason I felt that way was because the chemo she was on was starting to shrink the tumors. In fact, for a short time, she had an amazing turnaround. But because of the complications from the destruction of her vertebrae and the digestive issues she suffered, she couldn't continue receiving chemo. She was just too weak. It really wasn't too long after she stopped chemo that she died.

When I originally made that comment, I was trying to give you hope that your mom would live longer than Heather, even though I wasn't very hopeful that would actually happen. After reading your post about not wanting your mom to suffer needlessly, I can see that wasn't necessarily a good idea. I still don't have any idea how long your mom might have, but since she won't be having any treatment to try to shrink the tumors, I would probably guess her time would be relatively short, compared to Heather's. Especially if your mom has given up. Sometimes that can have a profound effect on the time one has left. But again, this is purely speculation and I am probably way out in left field on this one. And if I say anymore, people will think I am really loony, so I think I'll quit jabbering now. Let us know how things go.

Rosie

Stephany,
I think of you and your mother throughout the day and wish there was something that could be done to make it all go away. It's unimaginable to me what you are dealing with and what your mother is going through. I'm 43 and still have my very healthy mother and my very healthy grandmother, it doesn't seem fair that you have to go through this. But, it is the task that has been set in front of you and all you can do is your best, no one can expect anything more. Something Rosie said in one of her posts always stayed with me. It was about making sure to ask about last wishes, to ask about any arrangements a terminally ill person might like to make. I have no advice on how to go about doing that but it just makes great sense to me and something I will do if I'm ever in your position.
Take care and keep us all informed. We are here to help.
Minnie

Thank you Minnie and thank you all for your thoughts and prayers. She did write out her final wishes for us. IT was hard to hear what she wanted. But I guess she has done that already.

This sucks :-( The thing I have a hard time wtih is that I want to do something to help her, but there is nothing really I can do. But I do my best.

Thanks again. I will keep you posted. I am going to her home to see her soon.
Cindy, How are you doing?
Thoughts to all of you as well,
Stephany

Stephany, you and your Mom are in my thoughts and prayers. Love, Carol

My thoughts are with you Stephany. I have been wanting to write, but i am at a loss of what to say. I know exactly how you are feeling. All the memories are way to fresh. I sorta feel like we went through the same thing. Having lost my mom I am thinking back on what I wish I would've said. So many times I wanted to let her know it was ok to let go. That I would take care of dad. My mother to was in alot of pain, also. She too had given up, and wanted peace. We didnt know the end was so near, and i dont think I wouldve been able to handle knowing it was. Now i do find peace and comfort knowing she is no longer in pain. Even though getting by day to day is hard, with each new day it is a little easier. I guess all i want to add is to talk with your mom, let her know she can let go. I am sure hospice can help with that. I hope i am not saying something wrong, it's just something looking back i wish i wouldve talked to her about. You and your family are in my thoughts.

Dear Stephany
You are such a loving daughter, your family are very lucky to have you.
Your agony just jumps right out at me and I wish I could help make it easier for you . The only thing I can think of is, Blessed Release. At this point you just want her to be free of this pain and suffering , Rosie is right she should not have been sent home still in such pain.
Even though you are so busy with your mum you still find the time to give the rest of us some encouragement, I really appreciate that .
Thank you Stephany.
Much Love

Marica

Dear Stephany,

All I can say is I'm thinking about you and your Mother. In times like these I can't think of the right things to say. I feel your pain and as Rosie said, A basic right of a patient is adquate
pain control. There's no excuse for your Mother to suffer such bad pain. I would demand that right. Your Mom is lucky to have raised such a caring and loving daughter.

Love, Danny Boy

Stephany,

I am not so good tonight. I am drunk and lonely and sad and worst of all I have failed my son. I am devestated.

Most of my life has been a wealth of disapponitments and I have tried so hard to not give them to my sons. But I have failed. I got an email tonight from his scout leader saying that since I have not been able to get him to all of the activities he will not receive his "arrow of light". How can I tell him that after working hard for 5 years he is not going to get to graduate to boy scouts with his buddies?

They can't do this to him! It is not his fault! I am the one who let him down. And I cannot make it better for him.

Why do my children have to cry? I hate this disease!!!

It takes everything. I want my life back. Please! I cannot type through my tears. Sorry.

I have thought much about you today, The hardest part of a support group is that you feel each others pain.

I really wish I could hug you because I could use one myself.

Aarrrgggg!

Cindy

Cindy,
it pisses me off to no end that the so called "can-do" boy scouts and especially the scout leader couldn't have made provision to help you and your son out during this trying time. I would politely explain the situation to the scout leader and if that doesn't work tell him to go and f*** himself, that your son is better than an organization that touts itself as being for God and country when it lacks compassion. Remind him of their so called oath:

Scout Oath
On my honor I will do my best
To do my duty to God and my country
and to obey the Scout Law;
To help other people at all times;
To keep myself physically strong,
mentally awake, and morally straight

And their "vision statement"

Vision Statement
The Boy Scouts of America is the nation's foremost youth program of character development and values-based leadership training.

In the future Scouting will continue to

Offer young people responsible fun and adventure;
Instill in young people lifetime values and develop in them ethical character as expressed in the Scout Oath and Law;
Train young people in citizenship, service, and leadership;
Serve America's communities and families with its quality, values-based program.

Hypocrites!!!! They should be ashamed of themselves!