On Monday she was able to see her podiatrist and have her toes nails cut. On Tuesday her CNA came and helped bathe herself. On Wednesday she couldn’t talk, she had tremors and uncontrollable jerking, eyes rolling into the back of her head, coughing, gurgling sounds, couldn’t eat, agitated sleeping. It was horrifying. Thursday slept all day. Friday able to move around, eat a little. Today she says she has terrible pain in her right leg. She ate breakfast and now she’s sleeping. I don’t know if I can handle this roller coaster!
Vent here anytime.
Good luck.
You are correct that hospice isn't certainly what it once was. It is now a huge money-maker that many hedgefunds buy up; a whole lot of government money goes to them for very little. It is usually RN once a week and by phone. CNA to give bath or assist with shower three times a week at most, something twice. Social worker call (always used to visit) and clergy call (always used to visit). That's it.
If you call and speak with Social Worker she is likely to suggest you hire on CNA. WE all know the enormous cost in that. My friend died requiring two women, each on 12 hour shift at 20.00 an hour EVERY DAY with no days off, and buying them bring in food. Figure it out. It was enormous.
If there is no in-facility hospice you may need to tell your hospice that this isn't sustainable for you. That would mean they need to try to find in -facility or mom needs placement with hospice; they can help with that. That is to say YOU NEED TO MAKE THEM HELP with it.
I am so sorry. Often the medications just add to confusion. There is even worse problems in getting hold of the doctors than the nurses. Wish I had an answer. We all here do.
my mother has been with a Hospice agency since August.
i called them on Wednesday at 6:25 am. I spoke to an answering service. Received a call back from the Hospice by 7:30 am. The nurse said she would send a nurse out and told me to give her certain medications from the little white box. She said to call her back if the symptoms continued. I called her back before 9:00 am. Got a message machine. Left a message. No one called. I called again at 12:33pm and got with an answering service. Got a callback within the hour. They didn’t have any notes regarding the first calls and said someone dropped the ball. They sent a nurse out at 5:15 pm. He was helpful. Arranged for medication that my husband picked up at the pharmacy at 9:00 pm. Since then no one at Hospice has called to check on her accept the CNA who comes to give her a bath twice a week. My mother is less distressed than on Wednesday but still very disoriented, weak and complaining about her leg. She is making it to the table and feeding herself. I’m getting her bathed, clothes changed and trying to keep her comfortable. I’m not perfect. I’m trying my best to care for my mother. I’ve taken her to hospitals, doctors and now hospice. I’ve lost all confidence in the the medical system. It seems that they just don’t care about the aged. I’m 73 and the future doesn’t look hopeful. Sorry if I sound dramatic. Thanks for letting me share how I feel.
That would get you some extra time with an aid?
Is it time for placement given is is now pretty much 24/7 care that should be done by several shifts of people with several people on each shift?
Do you have plans or ideas as to how long you can go on with this?
And believe it or not you will be able to handle the roller-coaster that you're on, as you're stronger(just like we all are)than you know. And when you get off of this roller-coaster then you'll be on the roller-coaster of grief. So be careful what you wish for, as neither are fun.
When my mother was actively dying, she'd make such sudden, loud hiccups that I'd jump out of my skin. My blood pressure was sky high. When dad was dying, he'd breathe maybe 2 or 3 times a minute rather than the usual 18. I found myself holding my own breath waiting for him to breathe. I'm lucky I didn't need the ER myself. The whole experience is awful, but you're going thru another level of torture. Please call your nurse right away.
I'm sorry you're going through this process, I can't imagine your stress. I pray for peace for both of you and calmness for mom as she transitions.