Hospice started

Jeanne C.

Hello friends

My husband was approved for hospice today. I'm all over the place. I'm sad and exhausted. It was hard to hear that we're at this point. I'm weirdly relieved in some ways. But honestly, I'm not ok.

I appreciate all of you who have helped me so far. I'll continue to lean on this forum full of truly kind people because I know there's still miles to go.

trottingalong

I’m not there yet, but I can imagine feeling the same way.

Phoenix1966

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

midge333

I am sorry that you are in this position but glad you have the appropriate help.

jfkoc

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.

Denise1847

I am so sorry but glad you have help and feel some relief.

ButterflyWings

@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.

JeriLynn66

I understand your mixed feelings. Hospice can be such a Godsend and I hope you can get some much needed relief and support from your Team. Sending you love, light and peace from a retired hospice nurse.

Jeanne C.

Wow. It has been a whirlwind.

Day 1 (Wednesday): a nurse to review the program with us. Before she even left another nurse was on her way to do the intake exam. By 3:00 pm, I had a call letting me know he was approved.

Day 2: an additional nurse to do vitals and check on him (my husband's regular nurse was on vacation so this was a sub). Comfort medication kit placed in fridge. Calls from social worker and chaplain.

Day 3: 2 hour visit from social worker. We completed the scope of treatment doc, went over all the services, she arranged for a music therapist to come in next week, contacted his medicaid social worker, put in an order for incontinence supplies (usually his nurse will handle), brought info for making final arrangements, and just talked with me while my husband slept to get a handle on what support we have and need.

Day 4 (today): no one was scheduled to come out until Monday, but the social worker stopped by with a recipe for hummingbird cake, because she knows I'm a baker.

My husband is napping (as he does a lot of the day) and I'm sitting with a cup of tea. I'm sad. But I'm also grateful. The help is a little overwhelming after being on my own for the most part.

northernlady

https://alzconnected.org/discussion/comment/203127#Comment_203127

Oh Jeanne, I can hear you breathing from here. smile

I don't understand when Hospice can be called in, as we are still at the beginning of our journey. But as I read your update, I wondered why don't we all have this back up support as we navigate through this journey. Even at these beginning stages, our LOs aren't going to get better. Whether it takes two years or five, keeping them at home with good support benefits everyone.

GothicGremlin

@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.

White Crane

Jeanne, I'm thinking of you and praying that the hospice team offers you and your DH the care and relief you need. It sounds like they are already helping and supporting you.

SSHarkey

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!

Rocky2

My DW has been on hospice since January. It is a significant event along her journey. One that is emotional for me as her caregiver. But I know that enrollment in hospice didn't bring her to this stage. I've found the hospice team to be a great support and sometimes use them as a sounding board for care decisions. It's my hope that you and your DH will be well supported by your hospice team and both of you will find moments of rest.

Tom