My mama passed

CareBear81

On June 29, 2023 my mama passed away at 8:22 pm. I had been her full-time caregiver for almost 7 years. During that time I was also a college student. I saw my mama everyday during her illness. I didn’t want her to go on the journey alone. She was on in-home hospice for almost 2 years.

The hospice my mama was with I feel let me down this last week. There were no bereavement services from a chaplain or social worker offered. The last time my mama’s RN spoke with us was when she came to pronounce that she had passed. Our social worker that we worked with monthly told me, “I’m out for the rest of the week.” I’ve been dealing with these new emotions without their support. I felt abandoned.

I finally became so upset with the thought that I called and talked to the director of the hospice. He kept talking about people being ‘out’ and the ‘holiday.’ I was under the impression that hospice is available 24/7. There’s more than one chaplain and more than one social worker. All I needed to hear was, “I’m out for the week but I can get you in touch with the other social worker to come see you.” No. There wasn’t any of that. I’m worried for other families who will be grieving right after us. Being without the hospice team was a big blow. I’m not sure if I even have a right to be upset.

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CareBear81

I reached out to the ALZ hotline. They messaged me a bunch of sources to look up but there ended up not being anything available in my area as far as grief counseling. I’m looking for something virtually. I will ask the funeral home. They have been super helpful.

I know my mama was proud of me. One of her worries that she told a relative before she passed is that I would be ok. I have mental health issues, ADHD, autism and people aren’t very nice to me. I was mama’s favorite because I would do anything and everything for her; no questions asked.

I’m upset with hospice because after she passed, I needed someone to tell me what emotions I would feel. To tell me how to start my healing process. I’ve never lost a close family member nor parent.

The social worker tried to contact me earlier and was advising I get put on another medication to help. I’m actually pretty aware of my mental health and know when to reach out to my psychiatrist. Yesterday I called her and I asked for something to help with my anxiety and she did. I don’t know. Her text message kind of bothered me a little because some of the things she said I was grieving about are not actually things I’m grieving about.

Am I allowed to show a screen shot of the text without identifying anyone? I need a second opinion to make sure I read it correctly. I have to do that sometimes because (I’m autistic) I can’t comprehend what someone is trying to tell or the tone that they’re using. I’m bad at reading people.

harshedbuzz

@CareBear81

I am sorry for the loss of your dear mom. You were exemplary in the role of caregiver and I am impressed that you did this while also getting an education.

You sound justifiably angry that the hospice did not hold up their end of the contract when you needed them. I can understand it is difficult for them to maintain consistent staffing especially over a long holiday weekend when people want to take a break from work and be with their friends and family. If you feel a connection with the chaplain or SW, it would be appropriate for them to reach out now that they are presumably back to work to talk and share what resources might be useful for you.

I would encourage you to reach out to your own psychiatrist to touch base. You might not need a medication adjustment, but validation that whatever you are feeling is OK. Maybe they can suggest a grief group or talk therapist to work you through this. Everyone grieves differently, so it sounds a little presumptuous to tell you what you should be feeling.

Id' be interested in the message you were sent. If not, a screen shot, you could write it out. Parsing the emotional content of a text is always a challenge.

Does the person who texted you know that you are on spectrum? My own adult son is an alphabet soup kid (ASD, ADHD, GAD, SLD) and I have seen where people in the so called helping professions often make wildly misinformed assumptions about how and whether neurodivergent people process emotions. It feels dismissive and insulting to me when I witness it.

If you are really angry about the hospice and feel they are not delivering according to the terms of their contract, you could contact CMS and explain how you feel this organization failed to deliver what they were paid to do.

HB

CareBear81

@harshedbuzz

CareBear81

@harshedbuzz

Yes. All of the staff knew I was on the spectrum. I had to be honest so that way if I didn’t understand something they would know why. I started looking on my own for grief counseling online. The director wants to send the chaplain over today but the damage has been done. And our social worker is still out and he wants to send her by next week but I just don’t want to deal with them anymore.

It makes me sad because Medicare pays for bereavement support from a chaplain and SW and that’s basically the last thing they had to do for my mama was to be there for her family. This might sound weird of me but I need to make sure they don’t charge her for that. I’ll need to check her Medicare statements.

harshedbuzz

@CareBear81

The text doesn't seem insensitive to my ear, but you know best.

It sounds as if the piece that is disappointing you is that there was no one from hospice on hand in the days/hours when your mom was actively dying and passed. I know that does sometimes happen, but it sounds like you felt unsupported and alone in the process which is understandable. I'm sorry you didn't get what you needed.

I'm not sure how hospice billing works; dad died 10 hours before his evaluation for services. I think Medicare pays a daily rate regardless of whether the patient actually received services/visit that day.

HB

CareBear81

Thank you for clarifying those texts. I really appreciate it.

Her LVN came on June 28 and that’s when she told us she was going active and she didn’t know how many days mama had.

I guess I was thinking maybe she would’ve let mama’s RN know so that way support services could be notified? Mama didn’t pass until the next evening on June 29 at 8:22 pm. I don’t know I guess there’s just no communication or something. Oh well. I am going to contact CMS.

Thank you for your time

Quilting brings calm

CareBear…. Even if your psychiatrist is the best in the world, she/he can only assume things about your particular grief. It sounds as if the text is meant to convey that your grief is uniquely yours, and could be different than the way the next person grieves. The things you are bothered or grieving about about most could be different than what matters to someone else. It sounds to me that the psychiatrist wants you to know that you’ve done the best you could and that you don’t need to feel guilty.

I am sorry that the hospice after care didn’t meet your need. Unfortunately every business is short staffed these days and employees are overworked/ especially in caregiving fields.

Anonymousjpl123

I just want to check in and say I’m sorry for your loss and that you were let down by the hospice. It’s true that many places are short staffed, and care is hard to navigate in the best of circumstances.

I’m really glad you reached out to your psychiatrist, got some feedback from people here, and are following up with CMS.

i can certainly understand how upsetting it would be not having the chaplain available. But you sound like you are taking all the right steps. Again, I’m so sorry for your loss. Your mama sounds like a really good person.

Imnbed

I am very sorry you have lost your mom like this. I hear your grief and anger. A year ago, I lost my husband while in hospice care. The nurse took an hour and half to get to our home with the pain medicine he was begging me for. Unfortunately my husband had passed away by then and did so in pain. It took me a very long time to process that. They also did not contact me at all after, no condolences, nothing. Not what I expected. But I did go to the hospice for grief counseling for many months and found that very helpful. Grief is so hard and you are just on the cusp of it. I am sorry. My mom died of dementia last month. It really hurts. You loved her and that is why you hurt so much.

By the way, there are no patient charges for hospice care. Her Medicare covers all costs and supplies. In fact they are paid hundreds daily, whether that visit the patient or not.