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
Poor mother. But it sounds as though they're doing a good job of keeping her comfortable and not frightened. Hoping for the best outcome for her, whichever way that may go.
I was so glad that I was able to talk to brother at work yesterday; I usually get both of them on the phone and my sil is built very differently from the way we are. When her dad was dying of a dozen different ailements, her younger brother was jumping up and down on the chair in the hospital room screaming "fight it, Poppi, fight it" (I'm not exaggerating; they really resist dying, these folks.)
I pointed out to my brother that at the NH, mom is surrounded by folks who love her; everyone in the place stopped by yesterday, every aide, nurse, Father, two nuns, just to check in. When I mentioned to her nurse and the APRN that we wouldn't want to send mom to the hospital for the pneumonia, they looked at me like I had three heads and the RN murmured, "no hospital, Barbara, no hospital". I'm frankly of the opinion that the fall that she suffered was far less traumatic that the two way ride to the ER in the ambulance, and the experience of being in the ER and having tests, questions, etc.
Thanks for the good thoughts, Countrymouse; as you say, this is will come out as it's supposed to. b
While I'm rambling, my brother told me that in the ER the other night, when they were splinting mom's arm, one of the docs said, "oh, and we moved her watch and jewelry to her right arm". My brother looked at him and said "jewelry?" Yes, some sort of bracelet, the doc said.
"You mean her MedicAlert bracelet?" (the one with all her med conditions, etc.)
Well, yes. The one they didn't look at.
A couple of years back, my husband got taken to the local ER; as I was telling the ER nurse all of HIS medical conditions and meds, the nurse looked down sternly at my mostly passed out hubby. "Mr. S", she said, "you really should be wearing a MedicAlert". Before I could explode, he mutely raised his right arm with the clearly marked bracelet on his wrist.
Oh. Well......yes, like that.
I'm just checking in to see what's the latest. Keeping vigil with you along with the other AC posters. Take care.
Will you be making the round trip again today?
You are in my thoughts all day!
Hugs
Mom keeps having this terrible grimace of pain, or anxiety, or I can't tell you what. They've doubled her tramadol but she's having terrible problems swallowing it. I want morphine for my mother and for whatever reason, my brother and sil are against it. Mom had morphine when she had a mastectomy...we know it Works!
From everything I have read about and witnessed, the Morphine actually helps to open their airways and assists in easier breathing. I'd opt for the Morphine if at all possible!
When and if for the time comes that she is struggling to breathe, they often add in mucous thinners, and anti anxiety medicine for that too, even so far as to make the patient unaware, but obviously not you, so that is when it is time for you to get your own anxiety meds from your own Dr if you think you m6need them, as this is so difficult for you too!
I have been right where you are several times with my Dad, and now my FIL. I Never would have thought that FIL could have survived the Pneumonia and Sepsis, and so many other bad things, in his recent hospitalization, and now he is dying in our home, On Hospice, from this new diagnosis of Lung Cancer, and our world is turned upside down.
Hospice has been Godsend, and they have been so very supportive to us, especially for us the Caregivers! Go for the Hospice!
I wish for you and your Mom, peaceful recovery or journey, whichever is God's plan. But honestly, I do believe that Pneumonia is the old man's friend, as our folks would never wish to recover to a point of being even worse off than they were previously, of that I am sure.
Please know that I am thinking of you, and praying for your safety as you drive to and from your visits with your Mom. It is very easy to become tired, anxious and exhausted, when your mind is racing and thinking about other things, so be safe, drink plenty of caffinated beverages, and get safely to you destination! God Love You Sweetie! Love, Stacey
Seeing mom in pain has to be so hard -
is she running a fever?
You be sure to stay hydrated - I know I don't get enough fluids when I'm with mom for hours at a time
Hugs
Don't let them give Fentynal, it is very effective but wears off too quickly.
It is probably better if she is not fed if swallowing is a problem. Just make sure her mouth is kept moist and clean. Nothing worse than feeling your teeth are wearing sweaters. God be with you Barb
I lost it this afternoon with the "agony face". There was a long discussion of pain meds last night, the APRN doubled the tramadol and when I arrived today, mom still had the intermittent agony face. I went out to the desk and started crying. The RN in charge, who is a friend of my brother and sil asked if we had considered hospice ( yes YES). She ran mom's hx by the med director who said " why ISN'T she on hospice?" and reminded me that as one of 3 healthcare proxies, i could request an evaluation , which I did. I texted my brother, who showed up to talk about meds other than morphine. Oy. Fentanyl seems to be what he was in favor of, longer acting he thought. Anyway, hospice RN showed up. Sil called in. Bro started signing the papers as sil was driving to the facility. She asked to speak to my brother privately and I waved brother away to talk. Hospice nurse looked at me and said " is that going to be a problem?" I shrugged. He came back 10 minutes later and signed off. Sil came about 5 minutes later and seems resolved.
They gave mom a dose of morphine at about 6pm. It eased her breathing a bit. She started coughing more, which I think is good, but she is very very frail and hasn't eaten in several days. Breath smells sweet, according to hospice nurse.
I have no idea where this is going. My husband is having a urological procedure tomorrow, so I won't be there at all. We shall see what get next few days bring.
I can't tell you all how much comfort and knowledge I've gained from you all, and my appreciation is boundless. I stay hydrated, and am alert to falling asleep while driving. I'm an expert at pulling off and taking 15 minute naps. Thanks Again! B
Still, I can't help envisioning the scenario and thinking how distressing this must be. These are unsettling times.
I'm glad to learn that you're taking good care of yourself. It's too easy for family to be so overcome with decision vs indecision, anxiety, grief, and fear. Stay strong, my friend.
" Anorexia may be helpful as the resulting ketosis can lead to a sense of well-being and diminish discomfort."
You really have too much to do with your husband having a procedure tomorrow. I am glad you are looking after you and taking naps when you need them. Big (((((hugs)))) and prayers.
I am thinking about you, your Mom, and the rest of the family.
You are in my thoughts.
Glad family is on same page. That helps.
Youngest brother...there's always one...
It is all so sad. You are a real trooper! As much as we think we are prepared...we just aren't so don't beat yourself up over some tears. It's hard.
Peace be with you, your Mom, your brothers and SIL.
My fil had prostate cancer years ago, was in much pain, still competent, but did not want morphine because of chance of addiction. Least of his worries, IMHO. He passed shortly after starting the morphine, but at least more comfortable.