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
It is different for everyone so let each stage happen and don't try and get back to "normal"
It will be a new normal and will take a while to make new memories. Don't be surprised if it takes a year or more.
Sending you love and healing thoughts. Mom will always be with you in spirit so talk to her often.
Hospice suspected mom's behaviors, which had become completely unmanageable, were caused by pain from possibly a broken hip from the fall. We will never know for sure as if you are not going to do the treatment why do the test? It may have confirmed a break but, just additional testing would not be easy for mom. Then the excruciating decision of whether to attempt treatment. Mom passed three weeks after the fall.
My best to you Barbara and Stacey and families too as you are both on this final journey with your folks. Thinking of you both.
The Dr said inoperable, time for Hospice, can your family manage her at home? She was living with my eldest sister at the time, still recovering from the treatment, so I called her on the phone (she had stayed behind with her brand new Grand baby and the 2 other grandchildren. I told her the Dr said about 3 weeks (prognosis), Maybe! So of course sister said we'll bring her home. Same scenario I'm dealing with here with my FIL, Hospice sets up a hospital room in your home, and you rally the troops, if your going that route. I am one of six close siblings, so we worked like an army together, managing her end of life care, 5 months she lived, with a PIC line in her chest for the heavy dose Morphine (and I mean Heavy!) to be delivered into her, plus a push button, for when the pain was really bad. Urinary Catheter (same as my FIL), bedbound, the whole enchilada!
It is quite amazing how they send you home a patient who is So sick, So dependant, and your are left to Figure it out!
I tell you, just the medication management is a job in itself, and I feel like a scientist figuring out just the right formula to make him comfortable and manageable for us, and Hospice is very helpful in making sure the family gets some rest too, by providing Lorazepam to keep him Calm, and to get a good night's sleep! Heck, I almost want to sneak one of his magical relaxers at the end of some days too!! Lol!
The Hospice team is fantastic, so responsive to our questions and concerns! I know that it helps that I have a medical background, as I don't see how other people could do what we are doing at home to make his end of days as best as possible! The worst part is getting the poop part under control! 3 times today it's been "a mess", so the stool softens are the real tricky part!
While my FIL is not outwardly thankful to us in the day to day care, he did express extreme satisfaction to my daughter today, telling her that we are doing a great job in caring for him, and that he is so glad to be home with us, so there is that!
I'm so sorry about the possibility of a hip/spine fracture for your Mom, and thank God for good pain relievers! It's all about the comfort now! God bless Sweetie!
I'm thinking that perhaps they missed a break in the ER. Remember, 4 years ago, my mom fell in AL, got sent to ER and cleared. Broken hip dxed three days later by alert pt who noticed mom was not weight bearing.
So, at this point, if she had a broken hip, pelvis, she wouldn't be able to survive surgery. So morphine is the right choice. Just peed Jeane Gibbs who had something similar, her mom was on hospice with an inoperable broken hip and survived for another 2 happy years. Could it happen for us? Maybe?. Going up very early tomorrow and will be in touch.
I just can't tell you how much I love and appreciate you all. Gnight!
I've never heard of gravel in a bladder. That must be painful. Without being facetious, but trying to lend a bit of light banter to the topic, did he eat something made in China?
I'm crying with you reading of the afternoon -
Perhaps it seems that after taking so long, it now comes so fast
As in the past, you, Barb, are getting done what needs to be done
Rest your mind tonight. Hope tomorrow goes easily for hubs.
We're here with you
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.
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.
I am thinking about you, your Mom, and the rest of the family.
" 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.
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.
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
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
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
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
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!
You are in my thoughts all day!
Hugs