My mother is 94, went into the hospital back on Good Friday after an issue with a medication doctor gave for an unsteady up/down pulse. landed her in hospital for 6 days and she decided it was time to go to NH as I had done all I could for her. I had been going to her house every day for months, but 3 months before hospital had to go up 2 times a day to put compression socks on due to her ankle leg swelling. She seemed okay up until about end of July when she started retaining more fluid, (she was also on oxygen 24/7 to help with breathing), now being given lasik to help with fluid retention as she put on fluid weight. Now with a case of positive test in NH, I can visit due to her being on compassion care visitation (full gear) but she is basically bedridden now. Her one arm/hand had been swollen off and on since in NH, but now the other arm/hand is and I can tell that the trunk part of her body is partially swollen also. I was told at the one meeting that her heart is only operating at 45% so I know that is why she is having issues. She seems really sleepy but manages to talk just a little when i visit. I pray that when her time comes that God will take her in the night and that she has no struggles. I guess I am just wondering has anyone else have a loved one go thru this and what to expect. The NH is very good about contacting me for anything, as they did the other night because they noticed she had a small water type blister on her one toe (which she also had before going into NH but then it got better).
When it first happened, the care team put her on a course of antibiotics, but then it continued after any UTI/ infection should have cleared. The hospice RN called it dementia, but she’s never been diagnosed for this, and I am skeptical. I think the RN may just have been conveying that this is likely her new normal. They have put full rails on her bed and give her lorazepam as necessary to calm her.
Like you, I am grateful to have her in a place where I’m kept current on her condition. I spent the summer with her, visiting all day every day in a SNF, but eventually had to get back home, cross country. Knowing she has the best care situation that I could hope for doesn’t stop me worrying about her, though, and what she’s going through.
NH staff did not understand her needs and she died a horrible death, gasping for air.
What I suggest as a retired RN is some type of continuous medicine to ease her breathing issues, such as morphine drip.
Talk to the geriatrician and ask for this or other medicine he or she suggests. She can't call and ask for it because she needs it continuously.
My mom also experienced the same thing as MJ's once off the Lasix; the edema went away; I'm not really sure how long after that my mom passed.
With my mom, after she decided she was done with the revolving door of hospital/rehab/home and went into hospice care, she was much more relaxed.
Near the end she grew more and more confused; she always knew who we were, but she couldn't remember which room she was in, what time it was, etc. She also fell asleep very easily, sometimes right in the middle of talking. Also sometimes it seemed like she was moving in slow motion; like it would take her a full minute just to put on her reading glasses, or to bring a fork up to her mouth; things like that.
The day she started transitioning, I was going to take a shower; I checked on her and she said she was doing ok. By the time I got out of the shower, she was visibly gasping for breath and told me she "didn't feel well". The day before, her hospice nurse had warned me that we were coming to the time when she was going to start to need the morphine, and boy, was she right. My husband and I got her into bed and I started on the comfort meds; she passed 3 days later. At first she would drift in and out of sleep; by the last 24 hours she was unconscious and unresponsive. The nurse showed me how to administer the morphine when her breathing became visibly uncomfortable.
I'm so sorry that you have to go through this. I'm very glad that your mom's NH is being communicative and taking care of her; while I'm glad that I was able to give mom what she wanted in that she wanted to die at home; it was not at all easy to be the one to sit with her and watch and wait. It took me many months to get beyond the "if only's" as I call them - "if only I had given the meds more consistently, if only I had talked more to her while she was transitioning..." if I'm honest, I still have my moments, although not as many as at first.
Please feel free to PM me if you want to talk more. (((hugs)))
My mother had CHF for seven years, along with the edema, the Lasix, and everything that goes with it. Eventually the meds really weren't doing what they were supposed to, and we made the decision to take her off them and let nature take its course. )Weirdly, after taking her off Lasix, her edema went away completely.) She died about three weeks later.
Think about quality of life vs. quantity of life. That's what hospice focuses on. It's your call (or whomever hold POA) as to what to do to prolong her life, but if she's already on oxygen and has so much built-up fluid, that's just so hard on her heart. Hospice can help with other meds to make her more comfortable, and you can decide what to do about all the other stuff.