The C Word – Improved Level of Care

The level of care we received under Pathways Home and Health was lacking.  With a nurse who called late (9:15pm is late for us), tell me she had George on her schedule for Tuesday to change out a dressing but that she had a very full schedule with five patients and four of them needing extra time.  She proceeded to say that she didn’t know if she would see George but would try.  Knowing that we needed to move towards a Friday time slot, I asked if we could wait an extra day and change the dressing on Wednesday this week and Friday next week.  She said, “I don’t work on Wednesdays.”  So I said, “What about Thursday this week and Friday next week?”  She said, “My schedule is already full on Thursday.”  By this time I’m thinking that things with this agency aren’t very well organized and, on top of that, the last thing I should be worrying about is whether or not a nurse can ‘fit us in’ to the schedule.  (She ended up working a half day on Wednesday so came to see George.)

Fast forward to our discharge from the hospital this week with Hospice of the Valley.  The hospital release person was on the phone with me on and off during the afternoon.  When it was discovered that the pharmacy we wanted to use was not under contract with them, I asked who they did have a contract with.  She said “Sutter Infusion & Pharmacy), I said that was fine.  It was too late for them to put together TPN for him in order to go home Tuesday night.  Then I remembered that I had some TPN at home in the fridge and still had the equipment as well. It was decided that I could go home with that and HOV would come out in the morning to do intake. 

It was nice to go home to our own bed and sleep.  No nurses poking and checking in the middle of the night.  We arrived home about 5PM and George fell asleep in his recliner until 8 and then got up and went to bed.  He didn’t even notice when I hooked him up to the TPN! 

Queenie, the intake person, arrived about 9:30 and spent two hours going over everything with us.  While here, the Hospice Infusion nurse (Sue) called and it worked out well that she could talk to me to find out what I’d been doing and that sort of thing.  She was very friendly and helpful and even called me later that evening to be sure that I’d received everything and was doing okay.  She had also been in touch with Dr. B who wanted labs done today so had another courier come by between 7 and 9 pm to drop off what we would be needing! 

This morning our Case Worker (a nurse), Gerardo called at 9 and said that he and Sue would arrive about 11:00 to meet George.  While he did vitals, etc. with George, Sue spent time with me looking over my supplies, asking me questions, etc.  She showed me how to change the settings on the pump as we were lowering the time from 24 hours to 20 hours of infusion.  She watched me as I unhooked George from the machine and was impressed with the knowledge I had thus far on his care. 

They both told me/us what to expect and answered any questions we had. 

I felt VERY comfortable with everything.  It’s almost as if a weight has been lifted because I have not only Hospice of the Valley for support but a better pharmacy support as well. 

I felt more energized this morning than I have in a long time, getting up early to start working on one of my projects, did some cleaning and vacuuming, ran an errand, paid some bills and printed out our taxes.  Felt good to feel I’ve accomplished something! (Something not related to George’s care for a change.)

Tomorrow we meet the social worker, Lisa.  She will be one of our main points of contact.  We are anxious to hook up our daughters and granddaughters to anticipatory grief counseling somewhere close to where they live.  I feel it important to start now, no matter how long in the future George will pass.  I didn’t want to wait until it was so close that none of us would have a good chance to process things.  That is the main reason I wanted George to be on hospice.  Hospice is able to get more of the medications and supplies that we need without us needing to go to the store to get them.  It’s all covered under Medicare. 

George is having a difficult time accepting that he is on hospice.  The very word, hospice, to him has a negative connotation.  It’s like, “this is it, I’m going to die in six month”, even though numerous people have told him they know people who have had it for one or more years. 

He is also not happy that we can no longer go to Stanford Cancer Center.  Our oncologist really hasn’t done anything for us in quite some time (except monitor labs)  - and since George is on TPN he will have labs weekly so there is no need for that.  He is sad that he won’t be able to see the Palliative Nurse, In Eui.  He feels like he had a good rapport going with her. 

I am hoping that this experience will bring something positive to our table.  Death is a natural thing and one day we will all die.  Hopefully we can take some of the fear away that everyone is having right now.  And hopefully they will be able to keep George out of the hospital for a lot longer!  It has been an absolutely horrid five months of continual ups and downs in two to three week cycles.  It has exhausted both of us at times, moreso him than me.  My focus has been compromised for the past few weeks as I have had to deal with numerous ER trips and hospital trips. 

Now our focus is on keeping George comfortable at home and hopefully make him feel well enough to be able to focus on his relationships with others.  Quality versus quantity is what we have been trying to concentrate on and with our new connection to hospice that should be more achievable. 

I’m breathing easier than I have in a long time.  I can’t wait to resume my crafting as I’ve been on hiatus for months now. 

I know without a doubt that this was the right decision for us.  What a difference a week can make – a week that has allowed US to take charge of who cares for us and not some case manager in the hospital that doesn’t know what we want. 

Finding the right match for home care or for hospice care is so important.  It is up to us, the caregivers, to take charge of this.  To ensure that you have proper care and are happy with it.  You have the right to “hire” and “fire” providers that don’t meet your expectation.  I “fired” our home care and our pharmacy in order to find a better fit.  I’m so glad I did this. 

What a difference a week makes!