Hospice Misconception

terei

If your LO has dementia due to ALZ or other conditions, they have a terminal disease.  If they do not die of another cause(heart, etc) it will kill him.

Having hospice attend your LO DOES NOT MEAN death is imminent.  It simply recognizes the inevitability of their condition.   There are numerous patients that are on hospice for many many months or even years.

Please start to research hospice and their mission much much prior to your LO being in a late stage condition.   They come to help your LO, not to kill him.

I am aware of so many caregivers who wait til they think the end is near before they consider the benefits of hospice + they have missed out on months of care and help they could have received for their LO because they have the WRONG idea of what hospice really is. It does not mean you are ‘giving up’ on your LO.  It means you want more help for you and them during the time that you both need it.   Make some phone calls + do some research, you will not be sorry.

harshedbuzz

Excellent post, terei. Hospice can be a blessing in a MCF or SNF as well.

It's an additional layer of care for the PWD and the family. We missed getting hospice in; dad developed aspiration pneumonia and died hours before he was to be evaluated. I don't know that his care in the MCF could have been better, but I do feel like my mom could have benefitted from a social worker and certainly from the chaplain services as the recent move and caregiving left her unchurched. 

My friend brought in hospice early on. Her mom had dementia and breast cancer. In addition to the gear which made care easier, they provided a chaplain (on the second try- the first wasn't great either so she asked for someone else) that clicked with my friend when her overworked parish pastor didn't. The hospice chaplain even performed her funeral and graveside services. 

HB

May flowers

Terei, this is an important post! We did not wait - as soon as in home rehab said they could do no more for him, we knew we needed to get hospice in here.  

One thing that is very frustrating is friends and family (especially who are older) do not understand what hospice is. The have the misconceptions you describe and act like we are villains for having our LO on hospice. One family friend (near his age) said we were hurrying him to the grave

I try to explain it as best I can. My sister did not understand it, but now that she gets it she is trying to convince her FIL to being hospice in to help him with his DW, she is late stage 7 and he is killing himself trying to take care of her by himself. But he won’t even let family help.

mommyandme (m&m)

Hear! Hear! 

It’s so sad to realize that someones LO didn’t receive the benefit of hospice prior to their transitioning towards their end and their family members didn’t get the support either. 

Like I’ve said many times here…my moms been on hospice for over a year and she can still walk a little and feed herself, mostly.  If your LO is deemed not to need hospice they won’t admit them.  But if they do… oh my, what a blessing it is.  

Please don’t hesitate… just call and see if they may be of assistance. Even their palliative care alone would keep them in the loop for your future hospice needs. 

Thanks terei! 

rannswann

I second the importance of this post. My DW is at the very beginning of the late stages and I am so glad that I called hospice earlier rather than later. She has been on the caseload since 1/4/23 and the support my entire family has received is amazing to say the least. After the referral, the team came to our home the next day and did their assessment and admission. Since then the Nurse Case Manager visits at least once a week, 2-3 times some weeks. The Social Worker comes once a month and the Chaplain is in contact as needed. Meds are delivered either the same day or the next at the latest, depending on when the order goes in. They have been life savers for my family and make it possible for us to keep her at home with as little distress as possible.

My DW's disease progression has been rapid in this late stage, so hospice entered into the picture at just the right time. She is still somewhat ambulatory and can swallow, but is in a deep delusional and hallucinatory dementia that changes daily. Having hospice there to help me keep her as calm and comfortable as possible has been a godsend.

I would do the research in your area as early as possible in order to be ready when this heartbreaking disease decides to take a sharp turn. I wish you the best and stay strong!

Jo C.

Thank you terei, I agree this is an important Thread. Even Hospice comments that many people wait far too long to obtain their services and they could have done so much for so long.

It is wonderful to realize that Hospice will not only follow the patient in the home setting, they will also follow in a care facility.

J.

semmie

Wait, wait, wait…

i thought you had to have a doctor’s order and a “six months to live” diagnosis to qualify for Hospice.

Y’all are saying that’s completely NOT the case?

i think I have some phone calls to make…

terei

NO you do not need any dr’s orders. Call a hospice org near you, or ask around for a recommendation from others. Any hospice will be happy to walk you though the details of what they offer with a simple phone call.

SDianeL

thank you for this post. My husband was diagnosed with vascular (possible) dementia 18 months ago. My sister also has vascular dementia and is much farther along. She may need hospice soon. When my Mom had a stroke she lived over a week and the hospital recommended hospice care. I don't know how we would have coped without hospice. After she passed, hospice called to check on us. I felt guilt and wasn't sure we made the right decision, and they helped me cope with that.

SDianeL

I know this is a silly question. When do you know it's time to call Hospice? At what stage?