We started out loving her hospice service when she started over a year ago (for congestive heart failure). We had Margaret who was a funny and sarcastic nurse with a gravelly voice but who was great communicator. (Margaret died, tragically). Then there was Sandy, whom we also really loved - quieter but solid and clear-thinking. (Sandy moved out of state).
But in between, we've had a number of interim nurses whose names have disappeared from my memory. Some who had less reliability, or who seemed disinterested, or who just disappeared, and on to a new one.
Right now we have a hospice nurse, Mike (whom Mom always calls a "male nurse"... sigh). He is one of the senior nurses in the hospice group, but he's a bit odd. OK, quirky is OK ... I actually really like quirky-ness. But he is a bit loud and quick to talk but not as eager to listen. My sister was creeped out when he came in and gave Mom a big kiss (on the cheek), saying "I gotta get me some sugar" or something similar. Today he described how much he likes my mother, and claims she pinched him on the butt one time. OK, that doesn't sound like her, but OK. Quirky.
Last week, I called him twice and asked for help with the infected toe. I never got a call back, which is odd, so twice I called the office and said I hadn't yet gotten a call-back. Finally we spoke, and he found he didn't have the correct number. I guess that happens (even though my number is all over the records there). Yesterday I called and asked (for the third time) for results on a test, and still no call-back. This guy is getting on my nerves, with no routine communication to me and not even the courtesy of a call-back.
C'mon, Mike. I'm patient up to a point, and try to be understanding about lost phone numbers and your days-off. I know you're busy. Maybe you view family members of hospice patients as a distraction? But I am your biggest ally - or I'll be calling your boss again. Please let me be your ally and partner in caring for this sometimes-difficult but weary old woman, OK?
FOLLOW-UP: Mike finally called back - several times with individual new bits of information. We finally had a good conversation about Mom's heart function and her blood sugars. He still hasn't yet been back to the office to get the results of the Holter monitor heart function test that occurred a couple months ago, but he will tell me tomorrow. And, he said that the doctor has ordered an echocardiogram on her in a month or two for pulmonary hypertension.
I just have a sense that Mike is overextended, and always in a rush. He throws out comments, like "just between us - be sure to keep on the facility on her blood sugars", but they ARE doing blood sugars 4x a day. It is he who has not looked at them! I know that hospice work is difficult, and that my mom is not one of the urgent very-end-of-life cases. Her needs are more chronic, but she too is dying. Her intake is diminishing. She is nearing death, presumably. I need to stay more connected with Mike. He may (or may not...) know exactly what is going on with Mom, but I want and need to know too. This is part of the package.
I also will accept on myself the responsibility to be the squeaky wheel. If I need more conversation with Mike, I need to persist in asking for that (as I've done before, and as I did today). We did have a good conversation finally this afternoon, and I expect more information tomorrow. In life, usually have a strong ability to ask for what I need, but sometimes I forget when dealing with emotionally-charged situations like this. I somehow was surprised that I'd need to do so with hospice - but though they are a caring agency, they are also very busy humans. An important reminder to myself. Just ask, even if I have to ask a few times.
This is a delicate partnership, a dance, a shared relationship to support someone - to support my mother - in the last days or weeks of her life. With effort, we can work it out, to her benefit.
FOLLOW-UP: Mike finally called back - several times with individual new bits of information. We finally had a good conversation about Mom's heart function and her blood sugars. He still hasn't yet been back to the office to get the results of the Holter monitor heart function test that occurred a couple months ago, but he will tell me tomorrow. And, he said that the doctor has ordered an echocardiogram on her in a month or two for pulmonary hypertension.
I just have a sense that Mike is overextended, and always in a rush. He throws out comments, like "just between us - be sure to keep on the facility on her blood sugars", but they ARE doing blood sugars 4x a day. It is he who has not looked at them! I know that hospice work is difficult, and that my mom is not one of the urgent very-end-of-life cases. Her needs are more chronic, but she too is dying. Her intake is diminishing. She is nearing death, presumably. I need to stay more connected with Mike. He may (or may not...) know exactly what is going on with Mom, but I want and need to know too. This is part of the package.
I also will accept on myself the responsibility to be the squeaky wheel. If I need more conversation with Mike, I need to persist in asking for that (as I've done before, and as I did today). We did have a good conversation finally this afternoon, and I expect more information tomorrow. In life, usually have a strong ability to ask for what I need, but sometimes I forget when dealing with emotionally-charged situations like this. I somehow was surprised that I'd need to do so with hospice - but though they are a caring agency, they are also very busy humans. An important reminder to myself. Just ask, even if I have to ask a few times.
This is a delicate partnership, a dance, a shared relationship to support someone - to support my mother - in the last days or weeks of her life. With effort, we can work it out, to her benefit.
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3 comments:
Halter monitors and a work-up for pulmonary hypertension, why is she on hospice. It sounds like your just setting your mother up to get aggressive life-prolong care.
That's a great question, actually - why *were* those tests ordered by hospice? I don't know. That's one of my frustrations recently with hospice caregivers - not enough information about what they're doing and why and results. My mother is in hospice care for congestive heart failure. I assumed that the tests were just to determine where she was in her dying process. I don't want her to suffer - I'm **not** trying to provide aggressive treatment to prolong her life.
Time for a call again to them, I guess. Sigh.
I learned that hospice must routinely test to qualify any patient to continue receiving hospice services. The heart tests are to confirm that she still has congestive heart failure which brings her the hospice care.
I find I am still reacting to the Anonymous post. I find myself trying to be rational, but being defensive and angry that someone picks at me, questions my care. I guess that comes with a public blog or any internet posting... but I just need to shake it off. Having the responsibility of deciding such life-defining care weighs heavily. Deciding when to extend *some* care but not other care, when to allow her to fail vs a small tweak to prolong her life... the balance is difficult at times.
OK, shaking it off.
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