So far I hate the hospice care provider

I am so tired I don't even know where to begin. I signed the papers for hospice care on Friday. Today is Monday. I have only wanted to sleep the whole weekend away. The decision was agonizing. Truly. I am struggling to change my approach from SAVE HIM to allow nature to take its course. It's a mind fuck. I went with this particular hospice mostly because the hospice doctor we have been consulting with highly recommended them and because they have an actual freestanding hospice and I am hoping that they can accommodate the husband while I drive Josh to grad school at the end of August. Caregivers are entitled to respite care. But that is kind of the only reason why I have signed on with this hospice because 

OH

MY

GOD

have they said some weird fucked up things to me! So, here we go....

From the very beginning they keep telling me that the husband should never be alone but they  aren't sending people over here to watch him, they want to know how I am set financially so I can pay a stranger to do what I am already doing.  Thanks for nothing! Also, in my particular case, I already struggle with guilt. This is not a helpful and is probably a detrimental thing to say to caregivers who are already leaning towards the guilty side. Good thing I preemptively put myself back in therapy. Also, the thought of someone sitting awake in my house waiting for him to get up in the middle of the night would 100% render me incapable of sleeping. The end. It sends the creeps right up my spine. Not gonna happen.

And, last but not least, after telling me that I have to take care of myself, that I should never leave the house but should pay for strangers in here to watch him sleep they actually sat at my dining room table while we were signing the papers and told me I wouldn't believe how many caregivers die before the patients because they are so stressed out and have neglected their own care.  This was the straw that broke the camel's back so I turned to her and said That is the equivalent of telling a pregnant woman stories about still births. Why would you say that to me?

Then when standing on the porch as they were leaving I had the cluelessly not so brilliant idea of telling the social worker that I understand that they have to tell me for liability reasons that the husband needs 24/7 supervision. I told her how upsetting that was to hear since I am doing my very best here but that they have to understand that I might have to leave the house and will do it when it feels safest. You know what she did? Sit down for this one. I can not believe I am typing this in regards to someone in my general age group. She PUT HER FINGERS IN HER EARS AND SAID LALALALA.

Speechless. Completely speechless. So, for anyone who didn't take notes, here we have a big fat dose of "this is not helping me deal or cope" served up steaming hot ... here we go.....

1. Making me feel like shit for leaving the house and for sleeping.
2. Tells me, the caregiver, that caregivers are dropping dead from the neglect and stress of caregiving before the patients on hospice die.
3. Shoved her fingers in her ears and LALALA-ed while I was speaking.

And that is why, so far I THINK HOSPICE SUCKS. I feel a bit ashamed to admit that a big part of the reason why I ultimately decided to take this leap was because people giving telling me without specifics how helpful and supportive hospice was to her whole family. I keep hearing how hospice nurses are angels, no one seems to know how they can do what they do. I would like to return what I have already received and order one of those angelic hospice workers please!! 

Well, the other reason I decided to sign up now is just in case his situation changes rapidly I won't have to start from ground zero, I will have already gone through the paperwork. 

So far, the hospice experience has only served to heighten any stress and anxiety and guilt, and the guilt part might be the worst part of this. The last thing I need on the face of this earth is more guilt than I already have. I actually told them that 3 separate of my friends were begging me to leave the house during the lockdown. They were ready to hold interventions for me because I had gotten so depressed. So, I am feeling like the under appreciated and underpaid health care worker right now. But this place might give me respite care in their facility when I want to take Josh to school so they're gonna be our people for the near future. Things better get better.

 

Also, they told me that the nurse who will be assigned to his case will be calling today and she hasn't called. It's after 5:30.

 

Not the first impression you wanna give a girl!