Hospice started

I hope this extra help lets you have more quality time with your husband.

I remember the relief and thinking how odd but the reality is that now you have help. Please do take advantages of all the services offered.

@Jeanne C. I understand how you may be feeling. It was like an out of body experience for me, just for a short time (maybe a few hours?) and then the hectic whirlwind distracted me and we never looked back. Hospice swooped in like the cavalry that Bill writes about so eloquently - they almost overwhelmed me at first with such a focused flurry of action, equipment, med deliveries, hygiene supplies, and the visiting hospice team members. Then we settled on weekly visits from the nurse and CNA, and a check-in phone call every now and then from the social work lead -- and it has been a true blessing ever since.

His first time on hospice was just under a year, then DH graduated only to pass out and nearly fall the next day. I went with a different agency from the one that had just discharged him despite his nurse's objections to their releasing him as if no longer terminal or at risk, and the new hospice team has been on board for a little over a year.

So, we are one of the families that has seen hospice last for more than 2 years, and though my beloved is now in the final stage of this horrid disease, they have helped make it manageable. Of course most of the daily (and nightly) work is still on the primary caregiver, but I literally don't know how we would have gotten through the worst of the last 2 years without them. You keep breathing, and stay strong.

@Jeanne C. I'm sorry your husband was accepted into hospice. I remember having similar thoughts when my sister was accepted. It was like that big black anvil crashing down on my head - "so this is where we are now." Took me a bit of time to come to terms with it.

But then I had the same experience as you did - that whirlwind of hospice activity, them taking over Peggy's meds, the supplies, meeting the hospice team, all of it. It was overwhelming, but I felt very supported, and I was happy for Peggy too because I felt like they were taking their time with her. Peggy was well-looked after before hospice, but once hospice started, she was seen more frequently. I'm a natural born worrier so knowing that they were there allowed me to lighten up just a bit. I'll always be grateful to them for all of their help -- and their continuing support, even now.

@northernlady The hospice social worker told me that generally speaking, the person with dementia needs to be at stage 7, but there are exceptions. My sister was near the beginning of stage 7 when she was accepted, but it was her severe weight loss that got her in. At the time of acceptance she had lost almost 60 pounds in a relatively short period of time. This was all in California, so I don't know how it is elsewhere.

And I'm with you - why isn't hospice care the general norm for all people with dementia, no matter the stage? I know, I know, it all boils down to how expensive it is, but it would make everyone's (PWD and caregivers) quality of life so much better.

I have a vicid memory of when my father qualified for hospice. I was with him at this doctor’s office. I cornered the doctor outside the door, and practically grabbed him by the tie, saying “I need help! Put him on hospice now!” And he did. Right then. Never be afraid to ask for help!