I'm really feeling vulnerable today and I'm so frustrated. For many reasons: emotions of seeing daily end-stage deterioration, caregiver stress-relief, the previous time management burden of running a mini-skilled nursing facility at home with my daughters...we moved my husband to a nursing facility on June 30 after 9 months of caring for him at home in a fully bedridden state. Since he's been in the facility, pain management that should be so simple and just empathetically understood, has become a battle of wills and philosophies buried under rules and regulations, rather than about Gary's comfort.
The longer he is there, the more I get the impression I am perceived as the emotionally compromised wife, instead of a caring advocate. I am spoken to condescendingly when I ask for boluses on his subcutaneous CADD pump, or ask to keep the pump out of his bed where he could reach and compromise it--looked at like I'm being unreasonable that the pump shouldn't be in bed with him, and that his partial bed rails should be kept up for safety.
Today I'm being asked to participate in a team meeting, in 3 days, in the Administrator's office, and I have no idea what it's about. I've been waiting on a call from my Hospice nurse since yesterday, which would even give me some clue about why the meeting has been called so I can plan to be absent from my full-time job to attend.
This may not be the case, but there are many times I can't help but feel the facility staff and Hospice providers might be whispering about what I may not understand behind my back. What they fail to understand is that we've been dealing with this disease and decline for over 2.5 years, through multiple facilities and settings, so have a complete understanding. We aren't rookies, and they just don't give us credit for having a full understanding of all the cards on the table. The aggravation of all this gives me knots in my stomach and heartburn sometimes!
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