I sure could use any advice you could give me on how to handle this new stressor. While part of does stay cool so I can support my sister who is back home doing everything part of me gets terrified.

Mom took a bad fall this morn at the nursing home. She had a gash in front and an indentation on the side. She didnt know where she was and her eyes werent functioning right. She is on hospice due to her emphysema but she had this amazing ability to bounce back from really bad places. My dad had gone into hospice the week before I went into the hospital with my first MG crisis. He passed the day after I was admitted. I have 2 brothers that live on opposite coast and I am the 'go between' for old reasons. It is ok as I am glad to help my little sister this way, or just in anyway. This all has landed on her for years. I only had about 8 months of better health where I was alble to go back and give her ahand on some things.

I will do my usual stress reducing things but anyone that has experience and can offer tips I sure would appreciate that.

Thank you so
Annie59

Hi, Annie. No particular advice, but I will be anxiously listening to what others have to say. My own mother may need taking care of soon, and except for this new disease of mine, I would have been the one in the best position to do it. Now it's going to land on one of my other siblings. It's not that they're unwilling, it's that they're either far away or swimming in babies and toddlers.

People talk about "letting go," but I find it's one thing not being able to control what happens to you; it's a whole other thing when you can't help someone you love.

You are very wise to recognize this situation as one in which you will have to work at managing stress. I wish you and your family the best. Let us know how things go.

Abby

Thank you Abby, My mom was released back to nursing home today. We dont know if they will beable to care enough for her there given she is worse to the extent that she needs the morphine drug regularlyy now to manage the breathing attacks that send her into an hour or more of fear. My sis saw a number of these and it scared her to death. If mom barely moves her O2 drops. My sis says if they cant do enough for her the hospice center is next. She already is in hospice but had had some real good days.

It is hard to only beable to be just a phone support to my sister but it has helped her. When the staff at the hospital suggested she was not accurately portraying moms mental baseline I called the nurse and Shared the same view and pushed for the doc that did such a good job last April.

I have ended up in a bad way myself here tho as I am not stong enough to do that much talking during the day. I got pretty scared myself this morn cause it took hours to get more than just short little breaths. I had to get alot more mestinon in me than I am used to. Now I am wide awake and likely will be most of the nite cause of taking so much. Cant tolerate that much anymore. I called to try and get some help from my neuro. No such luck. I pray mom makes it till I get some better with the cold weather setting in. And hopeful more than that with the new neuro Nov 2nd. At least today I involved my lung doc and was able to illustrate to him how careless my neuro is.

Annie59

Annie, I'm sorry about your Mom. It's very hard to have a parent who is ill.

Morphine may be what is causing her not to breathe well. It sent my breathing into the moderately severe range. For someone with emphysema, it can make them worse. I know she needs something but maybe it's not the best option. I hope a good pulmonologist is helping her.

I know I sound like a broken record about vitamin B12 but it is such a common deficiency in older people. It may look like dementia, or Alzheimer's, when someone does not even have that.

I'm really sorry she is having such a hard time. You too. I was very stressed out when my Dad at the end of his life. You HAVE TO take care of yourself too. Take some time to take care of you, whatever is good for you to do. It's a very powerless feeling when someone you love is so sick. All any of us can really do is be there and love them.

I hope your Mom will get the care she needs. Hang in there.

Annie

Well said AnnieB3, your totally right about the B12.

Annie59, please know that both you and your famiy are in my prayers. I cared for two chronically ill parents before I became ill. It's not an easy task.

Any support you can give your sister is greatly appreciated, even a phone call is a help. I'm sure she needs someone to vent to as well.

Keep the faith, be strong for each other.

Rachel

Yes Rachel I can see how much I can just do by phone for my sis. Last nite she told me eveything including other things that already were going on. My sweet niece suffered an attempted molestation by a long time family aquaintance. She needs her mom, my sister, as much as our mom. My sis feels very near the breaking point with all this. She is one very strong lady but I am concerned. We are talking every nite now so she can unload and share the day with me. I am grateful I can do this.

Oh and this morphine is a special drug that is used for people in hospice and actually helps breathing in different ways. See this article below. If you had an experience with it negatively affecting yours I wonder if it was something other than the morphine in the pill. There are additives to pill that REALLY affect my breathing negatively. What mom takes is Roxanol.
dying.about.com/od/respiratorysymptoms/a/dyspnea.htm

Annie59

Annie, I know about this type of morphine but morphine is morphine is morphine! Chime in here any time, Mrs. D.

http://www.drugs.com/mtm/roxanol.html

I have known people who have had it. It still affects breathing. I hope they will think about the dose amount or other alternatives. I don't mean to add to your stress but unless they think your Mom's time is near and they are trying to make her comfortable, they could make things much worse.

I know how hard this is. My Grandma and my Dad went through years of health issues. It can be very overwhelming. Faith helps, as does knowing that you love your Mom and she knows it.

Annie

Ceratainly she is in hospice mode and comfort is an issue. I checked with my sis to be sure the nursing home staff would take giving her xanax now far more cautiously as that is what the hospital said was the bigger concern. When she had the attacks in the hospital they tried the mornphine first as it does work as a broncodialator and takes some level of anxiety down with the more severe depression of a valium or xanax. Whe her fear level was still so high and she could transition out of it nomatter what the nurse and my sis did my sis said lets try her xanax and the nurse said it maybe a really bad idea at this point now with her this much worse. My sis said that the xanax they had used at the nursing home, which I never liked, has been reduced and nolonger the first line for use when she is this scared cause her breathing is down and they have her oxygen all the way up and can do no more.

Her lungs are full of blood clots at this point whcih they found in April. Back then they said they didnt know how much longer it would be and they were giving her days or weeks. She has this ability to beat the odds. But this is a whole level worse now. I dont think there is a choice here. They cant let her continure to flail around terrified for more than an hour cause her breathing has dropped down so bad.

She is seeing daddy alot the past few days. Daddy died 2 years ago. I know part of her wants the struggle to end and be with daddy.

Annie59

Annie, I'm sorry that your Mom is so sick. I hope she finds peace soon. Losing a parent is so difficult. I don't know what else to say other than it sounds like she is in good hands and I'm sure she knows how much you love her.

I just wanted to post an update on my mom. The strange thing is that it may be good that she did hit take the fall and end up on hosp. What was uncovered at the hosp wouldnt have come out and it WAS why she had gotten worse over the previous days and maybe why she fell. It was her carbon dioxide levels extremely elevated. They put the bipap on her after they realized her there was no other reason for altered state and it worked great.

She is doing better. I am gonna check into how they will avoid this happening again out of the blue. The CO2 levels are gonna be higher as she gets sicker but there are things to do. Given how invasive the Bipap feels tho my sister and I know that her willingness to use is gonna be a huge issue. I wish she had my pulmunologist.

Annie59