Taking off your Nurse's Cap

[GinaDecorRN]

i felt an advantage being a nurse, acting as my mothers advocate as her advanced dementia required her being a ltc facility resident. i was her daughter and loved her, and part of that love was monitoring her care, reviewing her medication orders, labs and watching for skin breakdown, fall risks, etc. i was involved with her care plan and acted as her primary contact and power of attorney. i explained her medical issues to my siblings. i knew her medical history better than anyone.

i had a history of caring for my mom since my fathers death 10 years before. my father's last words to me being "take care of your mother". and so i did. i moved her near me and then in with my family until her dementia made it unsafe for her to ever be alone. i worked full time on a telemetry unit, night shift and my husband a hospital pharmacist. i visited her frequently in ltc and took her to all doctor's appointments.

i understood when it was time for hospice care and explained it to my brother and sister. my way of demonstrating love to my mother did not change when she was actively dying. i spoke to her, held her and brushed her hair, but i also assisted in turning her, fixing her pillows, listened to her heart and lung sounds and asked for heel protectors etc. i helped bathe her because i had been doing so for years.

the hospice social worker admonished me for being a nurse instead of a daughter, and told me i should let others be the nurse now. he told me it was time to "take off my nurse's cap" and just be a daughter. this went against the grain for me. i don't think i was being the control freak nurse/daughter. ( we have all dealt with those before) i tried to explain that providing care to my mother was how i loved her. i felt self conscious asking about her vital signs or medication doses after that. after she passed i relented and let the nursing techs bathe her. often i have thought back and wished i had bathed her that last time.

isn't it possible to be a good daughter and still think like a nurse? was my behavior any different than any other caregivers? how do you separate the roles?

[FLArn]

I think his goal was to get you to take care of yourself and let others take care of the nursing needs of your mom. For you to be there for her emotional needs and leave the physical care to the hospice staff. I was a similar situation myself and as a hospice nurse I knew what they were saying but it was still difficult not to "wear my nurse hat" sometimes.

[IEDave, ASN, CNA, LVN]

My take - do what's right for you. There is no real right or wrong in this situation, except if your presence was interfering with the hospice staff's ability to provide care, which it doesn't sound like it was.

In my case, when my mom was admitted to SNF/LTC, the administrator had this horrified look on his face when he asked if I was a health care professional, and he was seriously relieved when I said "no". Little did he realize that I had consultants backing me up that made things worse than having a nurse as her patient advocate when I shifted into "mamma bear" mode. I suspect that having a nurse as a patient advocate/relative could be potentially sticky, given the conflict between scope of practice vs. needs of the patient. Nothing in your post jumps out at me that says you were doing anything but being a good patient advocate & daughter - if anything, your acting as an additional resource to the hospice team strikes me as being more of a coping mechanism than anything else.

Personally, I think that bathing your mom one last time would've been a fine thing - both from the standpoint of providing post-mortem care, and as a tangible way to say "so long". When I move into the hospice arena, I'll keep this idea in my "field kit" of ideas - I've no doubt that with some relatives it would help to initiate the process of closure, and help to alleviate some of the guilt feelings they may be having.

Short version - you done good. :hug:

----- Dave, CNA & Hospice Patient Care Volunteer.

[jeannepaul, BSN]

You should take comfort in knowing you did such a good job with your mother. When I go to pronouce a patient, I usually tell the family what I am going to do. I will also ask the family if they would like to stay in the room and help. I can usually tell before I ask what they will say, I don't know if it is just a feeling I get, or the way they act, but I always take the non verbal cues as to how I will proceed. There is no right or wrong at the end of life, I always just say do what is in your heart and it will be the right thing to do. Even though you were not the one to bath her, she knew you were there with her until she took her last breath. Its always a blessing to see families care so much and take such good care, because in this day and age, it is becoming the exception rather than the rule. I have witnessed so many sad and unbelievable things when it comes to caregiving, its nice to hear of caregiving for love and not money, checks, and material things.

[tewdles, RN]

I agree that the MSW presumed something and then admonished rather than observe and then ask. As a hospice professional I will apologize for that behavior even though I am certain that you know it was well intended.

I am so sorry that you have regrets about that last bath. It made me recall my last moments with my mother, and I shed a tear for you.

Forgive yourself. Forgive the MSW.

We all do the best we can in a moment...

Peace

[ErinS, BSN, RN]

I think there is a big difference between being a daughter and being a nurse. I think that most of what you were doing is what we often see family members doing- helping to bathe their loved ones, providing support and encouragement, asking for things that may improve comfort. I think where the line may have been was doing a nursing assessment. And I agree with the social worker on this one to some point. There is a time to be a grieving family member, and a time to be the nurse in charge of a loved ones care. That being said, I always invite family to help with personal cares, including post mortem care. Often those physical acts are the last way to show loving care to someone who is comatose, or demented. I am sorry you have regrets, but you must remember (as we always tell our families) you did the best you could with what you had, and I suspect your excellent care kept your mother healthier and happier for longer than she would have been otherwise.

[GinaDecorRN]

Thank you all.

At the time I had been working on a telemetry unit, my patients were seldom DNRs. They were on a monitor and I did q4 assessments. I had vital signs and lab results to measure status changes. With my mom I felt a bit...blindfolded. I had a brother out of state asking if I was sure he should fly home, and other family members asking me to predict how long mom had. I was not doing an assessment like I would my patients, but must admit I listened to her lungs and discussed with hospice staff if suctioning would make mom more comfortable or just stimulate her secretions, and we discussed if O2 nc 2L might make her more comfortable.....

When I spoke to my family I did not "give report" as a nurse would, I spoke to them as a sibling. When my best friend, an ICU nurse,called I was able to give her a clear picture of what was going on. I kept my stethoscope in my bag, not around my neck.

My sister is totally non-medical (engineering) and I did not want her uncomfortable. She had never seen anyone die. I did not want to "one up" her or make her uncomfortable when it was time for post mortem care of mom. That was another reason I didn't attend to mom's final bathing.