I invite you to log onto the home page - www.thealzheimerspouse.com - and read this weekend's blog. It is an informative one on attending and documenting care manangement meetings. I hope it is helpful to you.
Joan, this came at a good time. I copied your suggestions into a form I can use when I ask for a conference, which I'm going to have to do soon. I too, worked in an envireonment where if it wasn't documented it didn't happen. Learned the hard way. DH has been so happy and cooperative lately at his ALF, then all of a sudden is once again arguing, acting totally crazy.
Joan--once again, you and I are in some ways living parallel lives. Because my Dad is also living in an ALF and has the very beginnings of VaD, I am "learning the ropes" of care in a facility and will be more knowledgeable if I ever have to place my husband. On the other hand, I was able to diagnose delirium in my husband this summer only because I have seen it in my Dad several times. The staff at the daycare program (including the full-time nurse) didn't have a clue that it was delirium causing new behaviors; because the nurse at my Dad's ALF taught me to look for a UTI or new medication when behavior changes occur, I was able to pinpoint the cause--it was a new medication. Perhaps this is the only advantage we have in being caregivers for more than one patient!
Great idea about the meeting report, and I'm sure the ALF staff was floored when you gave them copies. I think this is a good example of how we can treat caregiving as a job and gain more attention and respect for our concerns. I was immediately reminded of the problems Mary75 has been posting about and think it would be a good approach for that kind of situation. In addition, since nursing homes are subject to State regulation (not sure about ALF's), it would seem to me that they would be more responsive to problems when they know the family is documenting things in writing.
Yes, Marilyn, you're right, and I appreciate Joan's blog and will use the info. when I meet with the top brass at the Care Facility on Monday. I was struck by Joan's approach of courtesy and respect (really wonder how she translated the *&^$@)+^$#* into action when she got tough!) and I reread my e-mails to those in charge about the problems. I had worded them as documentation (and went into all the detail in order to counter arguments) but because I was angry and upset, was afraid that that was what had come though. Here's part of an e-mail (edited with names changed) that I sent yesterday (with copies of all powers to be) to document the last in several episodes of really bizarre problems with oxygen: Dec. 17/10 Dear Nursing Director' name, This is a follow-up to my phone call to you this afternoon re. another oxygen incident and NAME of nursing unit, X , R.N. X stopped me when I went to visit DH this afternoon and told me that she had given him oxygen for shortness of breath early that morning. When I asked her, she said that the Everygreen Care Aide had reported that Eric was short of breath when she “happened to be making rounds.” (This leads me to wonder if it is customary to make rounds with an oxygen machine.) T., the care aide {I hired], said X had come in shortly after he came on shift at 7:30 a.m. with the oxygen machine. T., on seeing the oxygen machine, turned off the space heater. X gave DH the oxygen and left, telling T. she would be back. Quoting T., “DH took the oxygen out. He said, ‘I don’t need this. There’s nothing wrong with my breathing. I’m not short of breath.’” T. said that he never told X that DH was S.O.B. T. said that he did not see any signs that DH was S.O.B., nor did DH report any. T. said he was surprised at X’s actions. Also, there are no recorded incidents in the care aides' notes of yesterday, last evening, or during the night of DH having S.O.B.. I don’t understand this action on X’s part, but I am disturbed that it happened, disturbed enough to report it to you. Perhaps you can explain it, and I would be interested in hearing the explanation. As it is, my conclusion is that I do not want my husband, who has little time left to live and who is weak, to be subjected to unnecessary and anxiety-causing actions such this. As Health Care Representative for my DH, I am required to safeguard and promote his health, and protect the wellbeing of his person. With this in mind, I again request that he be removed from NAME of Nursing unit and be put under the care of a different R.N. Mary 75 Health Care Representative and Co-committee for DH
Mary, I don't know how things are in Canada, but I would be suspicious that someone is being paid for each "treatment" with oxygen and therefore the patient is given an oxygen "treatment" even if they don't need it. I have known of a nursing home where an outside consultant was paid for nebulizer treatments. It was interesting that every patient in the home needed a nebulizer treatment at least 4 times a day.
No, no cost for oxygen here in Canada, but I do remember when I worked as an R.N in Illinois in the '50's that we had to make note of that for billing. I see it as an aging R.N. who has a control issue and, with such questionable judgement, I even wonder about beginning dementia. I say that because she has been a fine nurse, and yet now is not making sense. It reminds me of my husband in the early days of his dementia when he did things that defied reasonable explanation. DH had a spontaneous compression fracture of his coccyx 4 years ago and at almost 91, with brittle bones, and sudden drops in B.P., is at high risk for fall. He fell 4-5 times within a short space of time, which is why I have someone with him all the time. I think that the R.N. feels that she should have control over these care aides who have invaded her territory, and me too, and feels threatened instead of glad of the extra help. It's a strange word to use to describe her, but the word "miserly" comes to mind. It reminds me of a soon-to-be retired teacher I knew once who resented teaching aides who came in to help kids with dyslexia. She thought she could do it better. I've just spent the last hour preparing for the meeting on Monday, as per Joan's suggestions, and will fine-tune it tomorrow.
Now that's interesting, Mary75, a (possible) dementia patient in charge of dementia patients. Good thing your dh has got you as advocate. If enough advocates ask for transfers for their LOs, maybe a light will dawn for the higher-ups.
Thanks, Joan, I emailed this off to those at Facility meeting today. Preparing it beforehand helped organize my thoughts, and I had all documentation at hand to support my claims. I'm sure that's why the meeting went so well, and I am much relieved. It was clear that the senior staff had a clear grasp of what was going on, but for me to be organized got things moving.
CARE MANAGEMENT REPORT from Mary 75, 20/12/10 Name of patient: DH B.D. 28/12/1919 Date of Meeting: 20/12/10 Place of Meeting: Office of "A", name of Care Facility Attendees: Mary75 – wife of DH, "B", Nursing Educator, and "A", Social Worker Staff Concerns and Observations Identification of problems: Heat in room and use of space heater, oxygen in room with space heater, nursing issues raised by family, continuing problems with nursing issues. Family Observations and concerns: High risk for fall. Malnurished with weight loss. B.P. unstable, dizzy periods. Some incontinence of stool and urine. Pressure sore. Dry, friable and itchy skin. Several draining sores on his back from abrasions from his falls before Companions hired. Vomiting episodes. Alzheimer’s, but mind more alert since Aricept discontinued. Family has observed Mr. with feces in his pressure sore and caked around his scrotum daily. Family has observed foul smell to his breath daily. Family has observed wearing soiled clothing 2-3 x weekly. Family has observed unshaven face daily and broken and ragged nails weekly. Family has attended to these concerns and brought in Companions. Family has observed that Mr.'s room is cold and requires a space heater. Family has observed an oxygen machine left by space heater while the heater is on. Family has observed a report to them by Companion Chris from named Nursing Services that the R.N in charge has instructed him that if Mr. is S.O.B. to take Mr. to the Nursing Station for oxygen in his wheelchair. Family has observed that the R.N. in charge denies this, and family advised R.N. to talk it over with the Companion, or Name Nursing Services; R.N. advised that the family is only reporting what was said by Companion. Family has observed that on more than one occasion the R.N. has denied any wrongdoing, even though the action had been observed by more than one person. Family observes being confronted and told by the R.N. not to report anything to anyone except to her. Family observes being told by Tony, another Companion from Name Nursing Services, that the R.N. gave Mr. oxygen without apparent reason, which resulted in Mr. protesting and removing the oxygen catheter. Family observes that in a third Care Aide’s written notes (name) from Name Nursing Services, that the night R.N. had told him that if Mr. is S.O.B., to “open the door and window.” Staff Recommendations: Move Mr. to Home Central to a warmer room as soon as possible, probably within a week. The family will be notified and the physcial move will be done by Name of Care Facility. Staff advise that the nursing problems can continue wherever Mr. is moved. Staff advise that Mr. would be under the care of an L.P.N. and R.N. on Home Central who share patients, but that the R.N. is available to the LPN when necessary. *Staff advise that it is against the fire law to have a space heater in a room. They advise that the space heater be placed in the closet out of sight and that comforters be used to keep Mr. warm instead. Family Recommendations: Request that DH be transferred to a warm room on another nursing unit that is oxygen accessible and is under different leadership than the day R.N. on present ward of Home East. Family has posted a note on the cover of Name of Nursing Service’s Communication book in Mr.’s room re.* noted above, and have gone over it with the day companion and is assured of her understanding. Family advised day R.N. at noon today that family moved the oxygen machine into the hall. P.S. to Spouse site, I've phoned the Care Aide this evening and told her that DH is to be kept warm, even if it means using the space heater, but to leave the oxygen machine out in the hall. If machine is used, then heater off and put away.