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Countrygal55 Asked September 2021

My mother passed away last month, about three weeks ago. I miss her so much. What has your experience been with hospice after LO's passing?

She had turned 96 years old just a month prior. I had been caring for her in my home close to four years, two of which she had been bedridden and on hospice. I'm really missing her and feel very sad I also feel a sense of relief that she's not struggling with breathing and not in pain. At the time she passed she went peacefully and I'm so grateful for that. The hospice dr thinks she had aspiration pneumonia. Friends and family have been so kind and supportive sending cards, food, visits, etc. I feel blessed and so thankful to have had this support.
One thing I want to ask though is about anyone's experience with hospice after their loved one's passing. Our regular nurse called the afternoon of mama's death - she was off duty that Saturday so we had a fill-in nurse and I understand that part, even though we'd prefer our regular nurse at that time sometimes it's not possible and our CNA responded kindly to my text about mama's passing and signed the online guestbook but aside from that no one from hospice has contacted us at all, no card, no phone call, nothing. I realize hospice is a business and dont expect ongoing visits or anything like that but didnt expect to be completely ghosted. Hospice had been our lives for 2 years (two different companies) and we felt we had formed sort of friendships or connections in a way. Even our insurance company and financial institution sent us a sympathy card so expected at least that from the hospice company. Like I said I didnt expect ongoing regular visits or anything but at least one phone call or card to express sympathy or to ask how we were doing would have been thoughtful considering the type of business they are in which is supposed to be caring about families too. Another thing, the nurse let us borrow a pulse oximeter during mama's sickness. After a few weeks went by, I sent her a message to see if she wanted to stop by and pick that up. Those things are not cheap. We bought one for about $30. No response. Just baffling to me. What has been y'alls experience?

ACaringDaughter Sep 2021
I am terribly sorry for your loss.

When our parents pass, it is frustrating, disorienting, lonely and empty. A caretaker child feels purposeless, relief, exhausted, desperation, deserted . . . . The list goes on.

For the hospice worker. however, this is just another Tuesday.

They were there when you needed them most and now they have moved on and may not need or want closure - like we do.

My thoughts are with you.

earlybird Sep 2021
Hospice did call after my brother passed and we had bereavement support for a few weeks which was very helpful. I would go ahead and call them to make arrangements. A blessing that your mom passed peacefully. Hope you are doing well. Prayers sent.

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Isthisrealyreal Sep 2021
CG55, I am so sorry for your loss.

May The Lord give you grieving mercies and strength during this difficult time.

Cover99 Sep 2021
My mom passed at the Second best ranked hospital in the US. No contact from them, only to inquire when the body would be picked up by the funeral home. Other then that, the only information received was from the spiritual service that works with them (in the form of mailing).

No calls, from PCP, either the one that was treating her before death or her regular PCP. The LTACH she was in for a very short time did not contact either.

Really was not a biggie, since it closed out dealing with this hospital again. In fact the couple times I have gone to the hospital in the past 2 years, the EMTs were shocked I did not want to go to this hospital even though it was pretty close to home.

I did send a letter thanking the nurses that treated her, though.

Cover99 Sep 2021
First, I'm so sorry for your loss of mom

Second as you mentioned, it's a business. If no money was owed, no expectation to hear from them, in fact paying for the service makes and keeps it professional. so when business is done, both parties can go their separate ways.

Many hospitals do the same thing if a person dies there. They want the body out ASAP. Once that is done you don't hear from them anymore. Again, it's business.

Bridger46146 Sep 2021
I'm sorry for your loss. I've had the same hospice company for two relatives. their book contained information on bereavement support. They picked up equipment and supplies within the week after death. They did not make calls or send sympathy cards. I didn't expect them to do anything afterwards beyond providing bereavement support which I did not use.

97yroldmom Sep 2021
It’s only been three weeks and quiet reasonable for you to be missing them. Your life has changed completely. Theirs maybe not so much. The patients come and go for them. I know I have had conversations with some of the RNs who I suspect are suffering from compassion fatigue.

I think we are so confined with a hospice patient that many times the hospice staff is the constant in our lives who understand the challenges of the patient and share the same concerns. We grow attached to them and remember their kindness and care. It’s a very intimate service they provide.

It’s unfortunate that the company you used doesn’t appear to have a program in place to support you now in your grief.

Perhaps if you wrote them a note it would help you gain some closure with that portion of your moms life and the essential time they spent with her and supported you.

I am truly sorry for your loss.
Cover99 Sep 2021
Why bother?
notgoodenough Sep 2021
I'm sorry for the loss of your mom.

My mom's hospice reached out to me giving me information on bereavement support. I also got a survey to fill out; but I didn't get any sort of sympathy cards or personal calls from my mom's team or from the organization.

I think it takes a very special person to work for hospice. I think it can be very hard for the nurses, aides, etc, especially when someone has been in the program for a while. It may be that they are encouraged to NOT continue to contact the family after the patient passes; it might make it harder for the family to grieve; I don't know what the protocol is. I don't think, however, it's out of any sort of callus disregard of your feelings. It might just be as simple as they won't be able to maintain a "professional" demeanor if they contact you after the loss.

I also imagine that they get - I don't know how to say it right - verbally "attacked" by family members after a LO passes. People are angry when someone they love dies, and often they lash out at any convenient person. I can't imagine it's an easy thing to take care of someone who is dying, doing your best to ensure it's dignified and free of pain, only to have someone accuse you of "killing" their loved one. Now, please don't think I am in any way implying that YOU would have done such a thing, but I'm sure it happens to them on a fairly regular basis. It might be another reason they are encouraged not to- or maybe even prohibited from - contacting the family after the patient has passed.

I can understand how you feel; I grew very fond of my mother's hospice care team, and to suddenly lose contact was a little jarring. I did send a thank-you note to the agency, mentioning her team by name, just to let them know that we appreciated all they did.

Again, I am very sorry for your loss. (((hugs)))
Cover99 Sep 2021
Did they reply back?
funkygrandma59 Sep 2021
My husband was under hospice care in our home for the last 22 months of his life. I did get a call from one of his main nurses after he died, just to see how I was doing, and someone from their grief support did reach out by phone a couple of times(had to leave messages) and then I did start getting mailings throughout the year, telling of their grief support group and counseling that was available.
I honestly don't recall if I received a sympathy card or not from them, but I did receive a survey from them which I was grateful to fill out as I had many many issues with the hospice agency my husband was with over the 22 months he was with them, but particularly at the end.
I'm sorry you lost your mother. Please now take time to take care of yourself.

JoAnn29 Sep 2021
I also live in a small community. The hospice I used for Mom kept in contact with me for a year by mail. The initial letter told me what services they provide, one being bereavement help. I think I was sent something every quarter after that like a "checking in" thing. The last letter was a year and said it would be the last one but I still had the option to use their services.

Yes, I am surprised a card was not sent since she was a client for so long.
Cover99 Sep 2021
How much was this bereavement help?
Tothill Sep 2021
Hospice in my community is a non profit organization that provides care as well as counseling and support to families during pre and post death. Mum went to a support group from the time step dad died in late 2018 until the inperson sessions were canceled due to Covid in early 2020. They continues online, but Mum found Zoom to be challenging.

Daughterof1930 Sep 2021
My dad’s hospice company had all supplies picked up the day after he died. We got calls offering bereavement support and just checking on us periodically for a long while. My brother actually told them on the last call that he’d prefer they not call again as it was dredging up things he was trying to put in his past. I’m sorry for your loss and that you haven’t gotten an expected response from hospice.

Grandma1954 Sep 2021
Hospice typically does provide Bereavement Support and they should contact you or you should contact them.
You can always call and ask to the Team Care Manager. Or if you had a Social Worker or Chaplain visit you can contact them as well.
And you will get a survey and if the Hospice has not responded to your calls you should indicate that on the survey.

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