End stage signs. Anyone else been here?

I wasn't physically there but my boss would tell me what issues he was having with his wife, who had been diagnosed with Alzheimer's 12 years ago. I had the honor of meeting her and seeing her many times here at the office over the past 3 years.

Much to my surprise, she passed on early this afternoon. Thus the end stage could be a surprise. Last week my boss's wife was smiling, still able to walk around with guidance, and eating. The week before he took her out for a drive. Then later last week my boss said his wife stopped smiling and was keeping her head down. Then this weekend she wasn't responding in the same fashion.

I won't go into details of what he was telling me this morning, because I don't want others to think physical issues that happened with his wife would mean the same with their love one.

Many facility nurses are umfamiliar with the extra pain meds needed at the very end of life and the need can be many times the prescribed dose. If the patient says they are in pain it must be treated. They will show non verbal signs like screwing up their faces, moaning, crying out raised B/p and pulse, refusing to eat or drink. the nurse should make sure they are having regular bowel motions and do a rectal examination if indicated. They should also check for an distended baldder by palpating their abdomin and put a stethoscope on the belly to check for active bowel sounds. Now pain meds need time to work especially tablets so expect a resonse in 20-40 minutes. liquid morphine is more rapidly absorbed and acts more rapidly in say 20-30 minutes. So if the nurse says well it is not time yet she just had some. be sure and ask how long ago she was medicated and what she was given. Changing over to a patch, usually fentynal may be a good idea but it can take up to 24 hours to work so the regular meds need to be continued during that time. Also what is called a breakthrough medication should be available if the patch wears off too quickly or the dose is too low. Lots of things to watch out for but do not accept that kind of a snotty answer from a nurse, yes she is suposed to chart the nature and position of pain and rate it on a scale of 1-10 but she can do this with non verbal signs too . if you are not satisfied ask for them to call the Dr as there is always one on call even if they tell you it's the week end and there is no one there. he can prescribe over the telephone if an increase in an already prescribed drug is needed. At the end of life pain medications are frequently required in huge doses over what would usually be considered normal or safe limits. You will not kill the patient as long as the increase is gradual. You do something like with morphine if the dose is 2mg and it has not worked after an hour give 4mg and another hour if the pain is the same level double that and continue till the patient is comfortable. after that you can start cutting back the dose and increase the interval between doses but not as far as the previous pain level. this is the kind of thing the hospice nurse should be familiar with and there is always one of those at the end of the phone as Pam Stegman attested to. Just a side note that the fentynal patch does not work well on very thin people. it has to be applied on the upper chest back or front or either upper arm but there should be a decent pad of fat so it can be absorbed.

Thanks for the validation sandwich! I think/hope we've solved this problem in the short term. My mantra when I call is " no one in our family will ever complain that you are over medicating our mom for pain"

What the heck kind of nurse says "if she can't tell me where the pain is, I can do nothing?" Nurse Ratched? I hope those people get what they gave when it's their turn to be at somebody else's mercy. Sorry honey, if you can't tell me about it, I can't fix it.

Thanks, Momsgirl. She calls me "Saint Boni", in jest, because none of her siblings, including her, were able to do in-home care giving. Her Moms dementia is a few years further progressed than My moms. Every new thing that comes up with My Mom, She's been there. She has been a Rock to me, and I will do everything I can to reciprocate.

Mom is currently in the hospital, I keep emphasizing to each nursing shift that she's in pain, can't always tell you where pain is, is she grimaces, give her the morphine. Nurse this morning said, well if she can't tell me where the pain is, I can't give medication. I got hold of one of the docs who set the bar for pain meds lower than this nurse was using.

True Jean, the place where my SIL's mother is, does not have hospice ( I find this strange) but they have orders to keep her Mom comfortable. I told SIL to ask for more drugs because her Mom was in so much pain. They gave her a morphine patch, but would not have if sil didn't insist. She and her sibs are keeping watch and insisting on more drugs when needed. So sad.

I don't know if it works the same way everywhere, but with my husband on hospice in our home, I was in charge of the drugs. I was given a box of meds and told what each did and when it would be appropriate to use them. I could call the nurse 24/7 if I thought they weren't working or we needed something additional.

With my mother on hospice in a nursing home, the staff was in charge of administering the drugs, but hospice was in charge of what should be available to her. They were very responsive to family input.

I think you have little to fear about hospice being "cheap on the drugs." That is a more likely scenario if she is not officially on hospice.

One end-stage sign is often increased sleep. How many hours a day is your mother asleep? Has this increased recently?

My SIL is going through this now too.She has been in the NH for 5 years and "any minute" has been going on for 2 weeks now. Her and her 4 siblings are making sure one of them is with her at all times. I try to comfort her, and pass on wisdom that I have learned here but see my future in what she's going through. I will keep Mom home and bring Hospice in, when the time comes.
Just make sure the are keeping her "comfortable" and insist if they are "cheap" with the drugs, as some are. Good luck and comfort to you both, Poppy.

Been there. Hospice kept me sane, and kept her comfortable. The Morphine allieviated her pain, anxiety and seizures. The Haldol was added the last day, kept her comfortable in the last twelve hours. Call Hospice.

I haven't experienced that stage yet. My heart goes out to you. It must be very difficult. I wish peace for both of you.

I was there with my dad. Dad had cancer, and he fought every single moment. When the time came, he drifted quietly in the morning. He found peace.
Mom had a seizure a few months back, I thought that was the end. No, she keeps on moving.This part really hurts. You know they are not very happy in their body, but the body keeps going. Hopefully she will go peacefully in her sleep. She deserves to be in peace. My dad, just drifted away when he passed.....so did my aunt, and fil.....I hope your mom finds peace and drifts quietly in the night. Take care.