Is "hospice caregiver support online" a thing?

I'm blocked from being able to see my old therapist, and have zero motivation to try to battle my insurance company to get in to see a new one. Husband is transitioning from palliative care to hospice care this week. I'm really struggling with handling my emotions, (BPD, so, emotionally dysregulated on my best day) but not about the hospice stuff, strangely enough. It's my emotions, in regards to attitudes and emotions from friends and family that have me ready to scream.

The hospice team is coming Tuesday, and I know they have some sort of support available....but I'm concerned that it will be during visits only....where I won't really feel like I can be as open as I would need to be, because, hubby is right there, and he can't handle me when I'm dysregulated. Also, concerned that with the addition of CPTSD and BPD, they won't really "get" where I'm coming from.

So, does anybody here know of anyplace online, that would offer good support for hospice caregiver issues? Or should I deep dive into BPD resources, even though my situation is, well, situation specific? Or is this a situation where I need to hit this on both fronts - caregiver support AND BPD support?

So sorry for your husband and you...

I would say that you need to work on both fronts...

There is a website, as well called mygrief.ca, you may want to take a look at it...

I also have difficulty regulating my emotions when under stress...

Is there a way for you to identfy all the stressors and create an action plan and get some help (could even be meals be delivered to your home, etc.)? Would your family/friends help out... could you ask them for help?

What are your spiritual beliefs surrounding death?

Also check out: Psychology Tools | Deliver Effective Therapy

and google to see whether there are any death cafe meetings near you...

Thanks for your response. No death cafe meetings anywhere near. I'll definitely check out the link of mygrief, tho.

It would take a longer response than I currently have energy for, to go over my spiritual beliefs around death. Suffice it to say I have strong faith and beliefs, that are serving me very well. All is in order as much as it can be. I have no fears or concerns about what comes after. I am engaging in a lot of self care activities, daily, to keep myself strong. I am not feeling burdened or overwhelmed by the realities of my husband approaching death, of hospice care, of being the primary caregiver to him at this time.

The stressors I am facing is my husband's denial / rage of his conditions, his growing weakness, his loss of quality of life. Added to that is the denial and judgmentality of the friends and family, making things harder. I think from lack of validation. I tell them "he's housebound, and entering hospice. Call him. Come visit him. Spend time with him. Small groups; crowds wear him out". They descend in droves. They say "let's meet out to eat. Come see us. Come here, come there." A sister in law told the step daughter to come check on her father,....because he wasn't being taken care of. Yeah, she meant, by me. I never expected her to say such things about me. I thought we were close. They're not listening to what he says, what he wants. They aren't listening to what I tell them.

I know that they are facing their own issues of denial, and grief at seeing his decline, and fear of loss when he's gone. But I haven't the energy to help them. I barely have the energy to help HIM, and help myself. So, no. They aren't of help to me / us.

I think you're right. Two avenues of dealing with all of this is probably the best way to deal with it all. I'll work on strengthening my DBT skills for the BPD stuff, to keep myself as strong as I can be ( which will help with all the emotions being stirred up by friends / family / hubby's rage) and I'll keep searching for caregiver type support. Maybe the hospice team will have suggestions on how to deal with the family. I don't really want to push them all away from me, but if push comes to shove, I can create space so they can be with him if they choose, and yet distance myself from them.

My heart goes out to you.

Sorry to hear the family isn't of any help and are making things worse. I think it's definitely worth asking at the hospice for aid.

Pat yourself on the back for being so proactive, for your husband and yourself. You are asking a lot of good questions...

I just took a free webinar about grief and there's such a thing as anticipatory grief.

You might want to check out the website: Media – David Maginley.

Also, really important, check out HeyPeers - Where Peers and Support Groups Connect, as they have group meeting for people, as well as one-on- one coaching.

YouTube videos, such as Kathyrn Mannix also might be helpful.

Wishing you peace and strength on your journey...

Big hug

I'm so sorry you are dealing with all of that

The hospice group may have a list of local resources for you.

Your medical provider may have a list of local caregiver support information as well- resources they don't provide, but can point you to.

If there's an agency where you live, something along the lines of "the council on aging", they might also offer information.

Don't feel badly if you prioritize yourself and H, and end up putting down strong boundaries with extended family. If there's ever a time when you are entitled to do that, it's now. Shame on them for not having it in them to be more supportive of the situation. Unfortunately, it's not uncommon for family members to behave that way.

Thanks for the support and suggestions, really appreciate it! Just being "heard" goes a very long way, right now. Will definitely check out the resources suggested. Have started going back over my DBT workbook, to help strengthen and reinforce skills learned, which is also helping. Today was initial visit with hospice, to start the onboarding process. I'm feeling very hopeful after today's meeting. They were able to address a lot of the concerns I have, and I am feeling a lot more confident about the amount of support I will be receiving from them during this time. Just gotta remember to do what I need to for myself, too.

I found that hospice care giver/family support was only good if everything was just a normal process for the family. When anything else happened they couldn't provide the support & for me only a good quality T could help. My psychitrist & even my psychologist at the time were no help. My mom was in denial & I caught a paid caregiver abusing my mom & the police got involved & I ended up dealing with PTSD. Way too much for anyone to understand what really was happening let alone help me process it on top of my mom's death (from cancer). I tried the greif help from the hospice care but they just couldn't relate to what I had experienced cause it wasn't normal.

Best thing is try it & see if what they offer helps as we never know till we try

Anicipatory grief is something to look up.

Also look up Anderson Cooper's podcast segments about grief. The podcast is called All There Is.

Here is a mindfulness meditation that involves a raisin and is called The Raison Meditation. You can look it up, as there are slightly different versions.

This is one that I like and I read it aloud: Raisin Meditation | Practice
| Greater Good in Action

So sorry to hear of your experience eskielover. I'm also finding that those around can't relate. Very frustrating, isn't it? You can talk and talk and explain....and I might as well be speaking a foreign language.

Thanks, theGal. I'll definitely check out the suggestions you offered. With dissociation, I'm always looking for new ways to practice mindfulness. As for anticipatory grief, oh yeah, spot on. Have been doing that for about a year. Long enough that I can appreciate the blessings that's coming from it, even while I rale about the length of time I've been living it.

I am so sorry. It’s a lot…

If you have religious beliefs, could your religious institution (or any religious institution) provide support?

Kathleen, you should be able to speak to the therapist provided by hospice. It does not have to be in front of your husband. They should be able to help you figure out how to cope with his rage, or at least give you a trained ear to vent to.

Hon, don't worry about not having the energy to deal with all those other people. That's not your responsibility. Focus on self care and supporting your husband. They should be supporting you! They can support you or go kick rocks.

Sorry if I sound harsh. This hits close to home for me. When Mom was in hospice care I would sit in the parking lot and bawl my head off after visiting. It was so damned hard dealing with everything by myself. I would lament having to do everything myself and wish for someone to help. Then I would think of friends who'd been in a situation like yours.

Divine1966....I haven't historically gotten support when asked for from the religion side of things, but I'll consider it going forward.

Lizardlady....this particular hospice group doesn't seem to have any therapists available. We've inquired, because hubby knows how I've been longing for my old one. They told me, you have insurance, check with your insurance carrier about mental health resources available to you. Yeah, really. So this is week 2, and we've had visits with the onboarding gal, the nurse, twice, and a social worker. I am so not impressed with this group, but am giving it time. Maybe they'll be of more help later, but right now, honestly, they're not helping at all. And no, you didn't sound the least bit harsh to me. I thank you for the support! I'm seriously considering printing out what you wrote and taping it to my bathroom mirror, just to stay reminded of what you said. And if they tick me off, taping it to the "guest" bathroom mirror. I'm so sorry you didn't have someone with you in your time of need.

Hey all. Down at the bottom of this page, I noticed a link for similar threads,....and one popped up for "caregiver support". Since I realize I am going to need the ongoing support that I'm receiving from people here, I'm going to head over to there, which seems more appropriate for my posts about this topic. I wanted to thank all of you for the support and links to other sites and resources. I've been checking them out as I have the time, and they are indeed helpful.