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Life has changed overnight - hospice is a godsend
ButterflyWings
Posted: Monday, September 9, 2019 8:14 PM
Joined: 12/11/2018
Posts: 73


Hi all - I posted as part of a reply in the other forum regarding the benefits of hospice--but thought I would share here. This is just an update on how totally crazy life has become, and also a thank you to everyone who has shared experiences, advice, and suggestions in this forum. I would not have been prepared at all for this latest turn of events had I not learned so much from all of you here in the last 11 mos. of preparing for DH's decline, only to need it much sooner.

I feel remarkably calm (numb? wondering if I'm really in shock?), despite all the drastic changes that just keep coming one after another. I guess I'm OK for now. Just trying to support my loved ones and survive what life is throwing at us lately. And hoping I can finish writing my dissertation before it gets any worse. Its overwhelming and relentless. Here is our latest:

Our past 3 weeks included the regular weekly "half-week visit" from me and DH (PWD/AD)-- being interrupted by our LO's sudden stroke, ER, 4 day hospitalization and discharge to in-home hospice care. Bedridden, double incontinence, the whole 9 yards. Life just changed overnight, with no potential for reversing the paralysis on one side. My head is spinning, but this is our new normal. She is clear-headed (except for the periodic delusions and hallucinations that were bad in the hospital, but subsiding now that we are home...still, it may be undetected VD unfolding more obviously now, where we assumed "eccentric" in recent years). *DH is stable for now, thankfully.


TessC
Posted: Monday, September 9, 2019 11:44 PM
Joined: 4/1/2014
Posts: 4849


So sorry for this recent downturn and turn of events! It is traumatic for you both. I'm glad hospice has been good to you and your DH. Yes, they are very helpful! Take care!
ButterflyWings
Posted: Tuesday, September 10, 2019 8:50 PM
Joined: 12/11/2018
Posts: 73


TessC - Thank you so much for your kind words and thoughts. I appreciate the encouragement. By all indications, DH is not traumatized by this at all... thank goodness. He actually is finding ways to be helpful and that makes them both feel good. Getting water, answering the door if I am changing or dressing our LO, retrieving the mail, chatting with her periodically. I think it keeps both of them from being bored, stuck at home now.

I have made sure to shelter him from most of the hard stuff, and as you know, the hospice team is providing so much support with the nurse, bath aids/CNAs, and social worker visits. It makes a horrible situation so much easier to handle, not to mention the personal hygiene supplies and meds which are covered financially, plus delivered to our door since we can't leave her alone. I couldn't do this otherwise. You take care as well. 


 
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