I think this is the beginning of the end.

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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

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I am a hospice physician. I would like to say that you are not eligible for hospice services unless you have a prognosis of less then 6 months. We consider the patient and the patient's family as the unit of care. We provide the a nurse, nurse's aide, chaplain or spiritual counselor, social worker and a physician to each patient and their families. We provide 24 hours day, 7 day a week access to care through a phone number you can call and any of the previously mentioned providers can be called to come out and see the patient or the family. We also provide 13 months of bereavement care for the family. Hospice comes to wherever the patient is located nursing home, home, personal care home, or assisted living centers. We are an extra layer of care. A RN nurse is assigned to visit the patient at least once a week and then a LVN nurse usually comes a second time in the week (At least in our hospice). Then a home health aide is assigned to come out and bathe a patient at least twice a week. Most want at least 3 times a week. If the patient is having a hard time they can receive a RN or LVN visit daily especially in the last few days of life. Also there is a free to the family 5 days of respite care for putting stable at home patients in a nursing home for five days of rest so family members can rest. The there is continuous care for uncontrolled symptom management and in patient hospice care for symptoms that can not be managed by in home continuous care. The last two mentioned are for very specific symptom management and it is highly regulated by Medicare. It is not to be used for normal end of life care. You also get a social worker to help you with end of life care from anxiety in family and patient to planning a funeral or placement in a nursing home. They make an initial visit and then as needed visits. The spiritual care worker helps patients and families deal with spiritual issues around the end of life. They meet you where you are and can sit and pray with the patient and his family or coordinate spiritual care with your chosen faith. They visit initially and then as needed and you can refuse their visit. All medications related to the primary hospice diagnosis are covered by the hospice as well as medications related to pain, constipation, nausea & vomiting, anxiety & agitation. Most people who are in the last 6 months do experience pain and so yes we are aggressive at managing pain because it is not fair to die in pain even if you can not verbalize that you are in pain. The elderly often express pain in worsening delirium which means they see, hear and react to things other people can not see, hear and react to. As you age all your organs age including your stomach and your ability to metabolize medications in your stomach decreases. So giving your loved one more medications actually makes the patients stomach work harder at digesting them. So this means that a lot of the drugs and vitamins actually are not getting metabolized and are diminishing the amount of any of the drugs that are getting into the patients blood supply. It has been shown with study after study that the elderly medically fragile (anybody in a nursing home and almost anyone who is older then 65 depending on the person) need to be on less then 9 medications and that means over the counter medications and vitamins too. And most people in the last 6 months of life have lost enough weight that they no longer have hypertension and diabetes type II and therefore either need less of those medications and/or no longer need those medications. Most people who initially come on hospice have a "honeymoon period" when we stop excessive medications and the patient actually wakes up and is more cognizant and aware of there surroundings. We do not start pain medications unless there is some symptoms or source of pain. Most people in the last few weeks of life have pain as their body start to shut down and their muscles contract. We do not want you loved one to die. We just want to make sure your loved one is actually cared for appropriately. If you do not want to believe that I will talk about the economics of hospice. We actually do not want to kill your loved one because that would mean we can no longer be reimbursed for their care. (Medicare pays a set amount for every day you are on hospice. It covers the pay of all the caregivers, the director of nursing, the administrator, the pharmacy costs, the secretaries, the answering service, the physician etc. ) We have patients with varying length of stays some come on and die with in a day others come on and die 3 years later. Our hospice (Silverado Hospice) has a physician visit the patient with in 7 days of admission, to make sure the patient is appropriate and indeed has a life expectancy of less then 6 months if the disease was to run it's normal course. (This visit is not required by healthcare law) After the first 6 months patients are seen by a physician ever 2 months to re-certify that the patient's has a life expectancy of less then 6 months is the disease was to run it's normal course. (these visits are required by law) If the patient's illness has stabilized then the patient is discharged from hospice for extended prognosis. (life expectancy greater then 6 months) Our hospice location in and it has a census of about 150-160 patients with about 50 admissions per month and 50 deaths per month. We usually have 3-4 patients that we discharge per month for extended prognosis. We are happy to readmit them when their illness progresses again and that happens quite a bit, usually 3-12 months later. Medicare has strict guidelines that must be followed so the patient has to show decline each re-certification period (within each 60 day period). So that is what hospice actually does. We do not hasten death in anyway.
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GA I think the husband is going to be fine. He is angry about what happened but does not plan to do anything about it. As far as the bleed was concerned if she was being monitored properly there would have been an indication that something was wrong. Rapid pulse, low BP, restless, pale , thirsty. A bleed would not be normally anticipated with a simple procedure like that but of course anything unexpected can happen. You glance at a patient and see a change so the first thing to do is feel the pulse. This seems to be ignored these days but the feel of a pulse can tell you an enormouse amount. Bleeds tend to occur soon after the surgery for any case as the blood pressure returns to normal after being lower. The other time is about ten days after any surgery.
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This is one time when I think there is some negligence involved.

I would think that protocol is never to ignore a cardiac alarm. I'm not sure about the internal bleed and what could or should have been done to ensure that there wasn't internal bleeding, but the cardiac alarm should have been addressed.

However, to pursue a case for a wife with MS might cause the surviving husband so much distress that it would only make his life unpleasant, bringing back sad and unsettling memories.

Still, I feel badly for him. I'm glad he has you and your husband's friendship to help him through his loss.
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Such a sad story, Veronica. I hope your friend finds peace, and that you too can come to terms with it.
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Heard some sad news last night. A man we have known for a few years came over to help hubby set up his new printer. The first thing he shared was that he lost his wife in Jan from a medical mistake. She had mid stage MS and was in the hospital. They had just placed a feeding tube and she was on a floor where extra care was provided. She was hooked up to a cardiac moniter and the alarm went off. Her nurse was in the room next door and ignored it because there had been other false alarms. When the nurse finally checked Mrs P was in full cardiac arrest from an internal bleed caused by the surgery to place the tube which apparently had been a simple procedure. Naturally it became a full code but she never regained consciousness and was brain dead for the next three weeks before she finally passed. Mr P seemed to have accepted his loss well but felt the hospital had been negligent.

I felt that in many ways he was relieved because he had been caring for her for many years during the slowly advancing MS. he shared that he felt the hospital had not tried hard enough because she was an MS patient, but he said she was still reasonably functional and probably could have lived several more years.
I have been thinking about it all day and it has made me feel very sad even though I had never met her.
It was the same with my own patients. Some of the deaths I just breezed through and others I cried all the way home
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Stacey, that's such a touching story and post.
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Dear Barbara, I am so sorry for the loss of your Dear Mother, but I'm happy that she is finally released from any pain, and that you will not have to suffer through a long and sad goodbye.

I love that you had some comedic relief there in the end, we had some of those with both my parents too, which is all so important, as life isn't all just suffering and sadness. I'm sure your Mom appreciated all you did for her always, and especially there in the end.

One thing that happened as my Mom was Actively dying, was that my 2 brothers had concert tickets to see Peter Frampton, and us 4 girls had to practically Force them to go, as they feared missing our Mom's last moments, but I'm so glad they did, as they heard a New "Frampton" song, and not at all a ROCK song, but one of loss and berievement as Cleary this old Rocker had been through the loss of someone close, and wrote about it. So our brothers came back from the concert with the CD and the song with them, and asked if we could play this song at her funeral. The boys played the song for our Mom, there in the Hospice Hospital, and it was so beautiful and appropriate, called "Not Forgotten". I had them burn the song onto CD for me, and I often play it in my car, when I'm all alone, so it is Mom's song to me, and I miss her, and will never forget her.

I know that you are extremely busy right now, funeral planning and dealing with your own loss and pain, but please know that I am thinking about you my friend, and praying for you and your family, and wanted you to know that I so appreciate your friendship, and hope that soon things will be better, as you find your new normal without the constant worry over Mom's wellbeing. I promise that you will eventually be able to remember her in the earlier years, before the Dementia and the pain and sufferings of old age. Take Care Love!
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Wonderful idea to play music! I'm going to make a list and start getting CDS together; I think I might be facing a similar situation by the end of the year.

Strauss, Saline Fiddlers, Big Band and Mariachi music will be for starters.

Barb, it is so comforting to know that you were able to find peace for yourselves as well as for your mother. And use that music therapy for yourself over the next weeks and months, whenever you feel the need!
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Go Team Mom, indeed! Ok, that story made me cry. I could only wish for loved one's to be so thoughtful when it's my turn. Well done, Barb. Truly well done.
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Well done Barb. Go team Mom!
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