The other day, after posting a "rant", I realized that I need a place to write down what is going on. So I'm going to start here. I'm not asking for advice, but all is welcome, without push back.
My mom is 91. She's had a good long life. Had a stroke in June 2013. Was in acute rehab for 2 weeks, then sub acute for 4 more weeks. She developed vascular dementia, i.e., she knows us all, knows the day, date, etc, but thinks that there is a union trying to take over the facility she's in, that there are floods all the time and that the Communists are about to take over (she watches a lot of Fox News.....). We tried her in a lovely AL facility, but she was paranoid and couldn't remember to push the button when she needed help; she fell and we moved her to memory care. She didn't do well there and we added a full time aide. She fell THERE (with two aides in the room!) and ended up with a broken hip. Anyway, post surgery for that (September 2013) we admitted her to a lovely NH. She's done really well there, gained weight, become very mobile with a walker. Great therapists (PT is a sadist, but I think they all are, she's pushed my mom to do stuff none of us would have expected!). Mom was in the hospital for pneumonia in Januray, recovered well and was back up and walking in a few weeks. Fell in June; discovered in hospital that her heart rate was quite low; we ended up doing a pacemaker. Back on her feet in a few weeks. Mom started feeling out of breath in NH a week or so after pacemaker placement. NH dxed pneumonia. Several rounds of antibiotics; chest xrays, etc. We made an appointment to see a pulmonologist, because mom has had pleural effusions in the past. Before appointment happened, she fell in NH, ER via ambulance; blood tests were all out of whack. Long story short, they tapped her chest and the little pocket of bacteria in the bottom of her lung blossomed and sent her into sepsis. She made it through that, is back in NH, after 5 days of being bedbound. No fractures, but she's still in pain. On tramadol. Talked to her this afternoon after second PT session. She said "I'm not in pain, but my legs don't work". Okay, NOT in pain is huge. At least they've got pain meds on a schedule and not PRN, because if you ask her if she's in pain, she says "no". But then she is if she moves.
My POA brother is in Europe for ten days; younger brother is supposed to get back from vacation this evening. Hey, I'm not a hands on caregiver by any stretch, but I'm trying to take care of my mom the best I can. Trying to figure out the next steps. She's got CHF, doesn't seem to be progressing anywhere! Dementia is not of the 'mean" kind, she's just confused about the facts most of the time (asked me the other day if youngest brother had 3 or 4 kids, she was concerned that she couldn't recall 4th kid). NH says not time for Hospice. Hospital says that we are not at palliative care point yet.
Frankly, if this were one of my dogs or cats, I would have put them out of their misery this week. There. I really needed to say that. I don't think that there is any redemption in physical suffering
you are making this part of her life as good as it can be!
I wonder when a loved one, be it a parents or a spouse, is now in a continuing care facility, if we go through the *are we doing enough for them* phase?
he said watch how fast you see tail lights going out. the driveway..We r doing the best we can thats all we can do...as much as I complained about my boyfriend in my last post ..4 am he came into the living room andvtold me to go to bed and he would listen for mom..but I didnt..I'm use to the couch now..in fact maybe someone can help me...he bought a beautiful home and we moved here in june from a diffferent state.my mom moved with us a coupke weeks later she went downhill immediately..so all our plans changed..we planned on splitting our time between states and he could hunt where we camefrom..not fair his life has changed so much..I'm thinking about getting an apartment and moving mom and me out of his house so he can get on with his life...we really haven't even had a chance to enjoy the home..but I feel he needs to have his freedom to move on...He will soon be 65 he shouldn't have these burdens on him..He hardly knew my mom when she moved here..I don't know if I'm thinking rationally or not..we r looking for a nursing home but that vould be awhile..take care all....
Just lost half my post which is very infuriating.
Meet will all the available hospices in your area before the care meeting to decide if the NH choice is the right one for you. She sounds as though she is appropriate for hospice care but you don't have to have them if you are happy with the care she is recieving. You can also change hospices or simply discharge Mom if you don't feel they are helping. You are free to come and go it is not a final choice. As far as continuing to tap the pleural effusions, if it distresses mom don't do it as long as she is not really breathless. often the same effect can be achieved with diuretics. As time goes on even if you tap she will retain fluid again, it is the nature of the disease. At that poinst she will be nearing the end and can be given liquid morphine which will mask the symptoms so she feels comfortable. Your SIL is right to question every recommendation. The question to ask is "What will happen if we don't do this and can we do it later if we change our minds?" The goal here is for Mom to be comfortable and not be stressed with unessesary tests. Just try and make any decisions during office hours so that the right personel are readily available. You don't have to have hospice at all. the NH is taking good care and you have the right to veto everything. If she was living at home I would definitely recommend signing up immediately because they do have a lot to offer. blessings to you all and guidence in making the best decision for Mom
I realized that getting bogged down in the details of her care is what psychologists call "displacement". You're upset about something, but you focus your concern onto something else to avoid looking at the thing that is ACTUALLY upsetting you. In my case, I'm upset that my mom has dementia, worsening CHF, has had pnuemonia almost constantly since January and is clearly getting frailer by the day. Is she activly dying? It's hard to tell. Her pulmonolgist said to me the other day (when I asked if we were at the point that we should call in Hospice) that he thought that we had one more emergency trip to the Hospital left and then we would see a really rapid decline. It was good of him to give a solid opnion, whether or not it was wrong. Since I've realized that I'm displacing all my angst onto the NH, I'm feeling much less angst-y. Just wanted to share.
You're doing everything right, I've nothing to add except a hug, and all good wishes for her comfort. Keep in touch xxx
Is she on oxygen. Personally and I emphasize personally as a retired hospice RN I would stop the antibiotics and any other meds that are not designed for pain relief anti anxiety. she can eat and drink whatever she wants or nothing. The anibiotics will just upset her stomach. If she gets restless make sure they check her bladder.
it's OK to put a catheter in at this stage unless she is distressed by that. Saves a lot of moving and changing. She could have at tube put in her chest which would allow the lung to re-expand but she sounds as though she is too close to passing for that. if the NH is unreliabel make sure you are there asking questions and she is getting enough medication. This is very hard and thoughts, prayers and hugs are comming your way.
I rely on the assisted living staff and doctors, labs and hospitals to keep up their end. When they don't, it takes hours of follow-up to make sure that things get done. It is a lot of responsibility and pretty much a full time and thankless job.
I get on rants too - because I am exhausted being the go to person for all of it.
Then the guilt sets in after the rant - since they really can't take care of themselves. I think they both will outlive me - this is one tough generation.