Palliative/Hospice Care Part 2 The Disaster. - PSP Association

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Palliative/Hospice Care Part 2 The Disaster.

Two weeks ago on Monday I got this odd robo call from the palliative/hospice care organization the primary care doctor recommended asking 5 questions. One being did I know when my appointment with the visiting nurse was. My response was no. Later in the day a person called for the home care agency to tell me the visit was scheduled for Wednesday. Told her that was no good for me. I did errands and shopping Wednesday and Friday mornings. Was told the day could be switched to Tuesday or Thursday. Asked for Thursday. I thought I would get a call confirming Wednesday at some point. I didn’t. Called early Thursday morning to find out if anyone was coming. Was told I was on the schedule. Asked when and who would be here. They didn’t know who or when. OK. First visit maybe a rocky start. I’ll allow for that. At two in the afternoon got a call from the nurse who asked me if I still wanted her to come. A rather odd question from my perspective. Said yes. She told me she would be here in half an hour. She showed. Said she wasn’t the nurse for this area she was coving for her. That nurse had unexpected surgery and was out. Made the adjustment for that. I was still OK with this. This past Monday got the robo call again. Knew the visit was set for Thursday. Was OK with the set up. Meanwhile the social worker assigned to me by the agency called wanting to come by. Told her when she could come. She called back to postpone until today. Yesterday the set nurse visit never happened. No call to say they weren’t coming. I was left hanging. Called the agency up this morning and told them they were out. I’m moving on to another agency. I get the feeling I am going to have to do this all by myself. My ever so low opinion of medicine has sunk even lower.

As I wrote this the nurse from the agency called me to apologize. She didn’t know what had happen. I filled her in. Told her it was too late. I have enough drama in my life daily without them adding to it.

13 Replies

It drives you mad if you think someone is coming and they don't turn up.Happened to us yesterday.Nurse to visit pm so cancelled a friend visiting then nurse didn't come.I feel your irritation.

in reply to Westerngirl

As I said to Diane yesterday as we ran errands I am tired, cranky, old and crazy. Mess with me at your own risk.

I love your attitude. “I have enough drama in my life daily without them adding to it”. So true! My husband used to always say “vote with your feet”. Oh how I miss my husband’s wit. Communication with him is just getting harder and harder. You’d think the nursing staff would be better equipped to handle our daily lives. Just maddening!

Rolling with the punches (I guess).

Vent over. Maybe I can sleep now. 🤞

in reply to SewBears

You’re fired does get attention. Too little too late.

Oh dear Jeff. What a catalogue of disasters. You really do not need all this at present. Good idea to change to another agency and I pray the paliative nurses side gets sorted out soon.

Have you recovered from the fall the other day? Big hug. AliBee xx

in reply to AliBee1

My life has been rather full of events lately now that I think about it.

We both had a few scratches from the fall but that was it. Got off lucky with that.

AliBee1 profile image
AliBee1 in reply to

That's good xx

I agree with you Jeff, outside agencies sometimes just seem to create more stress. This last six months I find myself often saying, dealing with Mum isn't the issue, it's the crap that comes with it from outside. It is tempting at times just to tell them to get lost but at some point I fear we will really need them. Hope the new agency give you a better service.

in reply to AJK2001

I now have questions to ask the agencies that I didn’t. Number one will be am I going to be talking to a human being? The first contact from the fired agency was a robo call of questions. That should have told me everything I needed to know.

rriddle profile image
rriddle in reply to

Glad you can get at least something positive from this sad experience. Hopefully the next agency will learn from this experience too and perform better for you.

A day in the life of a carer, you have to be prepared for so many things to be thrown at you and bounce back in the face of frustration and disappointment. I was quite lucky with the care agency who tended Ben, not so lucky with the nursing home where Ben was staying for respite but that's another story! Xx

in reply to Katiebow

I know it’s hit or miss which is why I am moving on immediately. When confidence goes it isn’t easily recovered.

Jeff, that sounds almost identical to my experience with palliative/hospice care!!! They didn't show up when they said they would and didn't even bother to call, and some days they showed up at my door without any notice. I had a hospital bed from a care agency that was in excellent condition and hospice replaced it with a very inferior one. When my husband became very ill and had to go to the hospital with a UTI, dehydration and aspiration pneumonia, they kept pestering me to make an appointment to let them have their bed picked up and returned. I would never use this company again!!!

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