We’ve had two good nights and more than a few good moments during the last two days! Hurray!
The parade of hospice help has been both exhausting and greatly helpful and when they heard how hard our nights were, they were horrified we hadn’t called them. Who thinks of calling any medical type help at 2 AM?
They sent us an upgraded machine for Larry’s sleep apnea – the problem of stopping breathing as you sleep. He’s had the condition for four or five years (frequently goes with MSA and Parkinson’s) and has used a CPAP machine which pushes air into his lungs to compensate. But with the current lung problems and congestion, it hasn’t worked well for him. The new machine is a BiPAP – which more closely mimics normal breathing. It’s helped so much he didn’t even need oxygen last night.
The sleep neurologist we saw yesterday said that BiPAP’s are much better for the problem but more expensive so the insurance companies have you try a CPAP first. If we hadn’t been on hospice, it would have taken sleep studies and multiple office visits to confirm to Medicare he needed one. But one phone call in the afternoon to the hospice nurse and it was delivered that evening.
Good nights mean better days. The sky was this gorgeous blue today with big puffy clouds, and the sun created strong shadows in the yard. We got Larry in the pool, and he and his son had a Hallmark moment playing a bit of catch with a water ball (with me helping with balance). We even went out for ice cream – orange sherbet and vanilla swirl at an orange grove.
He’s not eating much but he definitely enjoyed the ice cream and he’s still enjoying watching the Red Sox games on TV. How nice the team is doing so well!
Two children have left for their homes in Seattle and San Francisco, the other leaves tomorrow with his wife for Massachusetts. They were AWESOME to have around during this crisis time – working as a team to solve every problem for us. There was lots of laughter and love – many more than a few good moments! They even did an intervention with me to make sure I got support for myself after they left. It’s hard for them to leave and hard to have them go!!!
The strange thing is that the few good moments feel so normal, it almost catches my breath. I savor them for what they are! They lift our spirits and fill the well a bit. We wish for more. Hope lingers amidst everything.