Allow me to vent.

JoseyWales

So, my feelings after posting this are no longer positive. I vented. Glad for that.

I'm obviously in a really bad place because I can't take any help without having it make me feel worse.

This is the longest, hardest road ever.

trottingalong

I have nothing of value to say, other than I feel for you. I am not even close to being where you are. I understand the living rural though. We have one facility, but it’s not a good one. Good ones are hard to find, so I’m glad to hear overall you found one. Your life is where you live and work. Your stress level sounds like it is high, at least at the time of writing. I’m hoping someone has some advice that has been or is, where you are. As my DH gets worse, my family often says to move to where they are. But this is where I love and my DH loves it here as well. It’s well meaning I know, but it will never be a solution for me.

SDianeL

So sorry you are going through this. It's heartbreaking watching your LO suffer and not get help. I would first contact the MC Administrator and voice all your concerns especially about the nurse communicating with Hospice. Then I would contact the Hospice Administrator and relay your concerns. If that doesn't help, Here are some tips on how to file a complaint: https://hospicefoundation.org/Hospice-Care/Filing-a-hospice-care-complaint

dayn2nite2

May I explain something that is possibly happening with the staff who expressed compassion toward you on Facebook?

In a general way, they are violating his privacy by commenting, because they aren't supposed to even admit they know him. If their friends/family/coworkers know where they work, and they have given you support publicly, then 2+2=4 and everyone on Facebook knows that he is a patient in the facility they work in. They don't have to come right out and say so, it's a pretty good assumption.

This violates your husband's privacy and they are violating HIPAA in a general way by making any comment. I would no longer post any video of your husband to social media at all. You cannot make people who are not visiting come, they have to want to come themselves.

I just thought I would give my input as to why the staff were admonished.

Lgb35

I am so sorry you are going through this. You are much further in the journey than I am. I can see myself in your shoes down the road. We also live in a rural area. DH is only 60. I am 53 and will be working like you throughout this journey. I don’t know how I would ever be able to afford MC and have enough remaining to support myself into the future beyond this disease.

Prayers to you. Vent anytime

jfkoc

This is horrible for all concerned. What meds are being given to your husband?

Denise1847

In addition to the suggestion re reporting to the Administrators of the MC facility and Hospice, you could file a complaint with the health dept as a last resort. Depending upon the state, there may be other governmental agencies that oversee facilities. I would use this as a last resort.

I am so sorry this happening. It truly makes me sick.

Chammer

@joseywales, My first career was health care and the first hospital I worked at had a 4 unit psych unit. One psychiatrist most common diagnoses were Adjustment Reaction of Adolescence or Adjustment reaction of Adulthood. I was a young pup fresh out of college and very naive. I didn't really understand what those might have meant at the time but time and tide have given me more understanding than I want! I completely agree that you are dealing w a Situational Adjustment Reaction! (((Hugs)))

Quilting brings calm

Can you video some of his crying times over a few days and then show that to people who don’t believe you? I mention over a few days so that they understand it’s not an occasional thing, but a daily one.

My next suggestion - you can ignore if it makes you uncomfortable - can he be given a sedative during a particularly bad episode so that he goes to sleep for a while? At least he’d get some rest that way - and so would you. I’ve been at bedside when someone is crying or in pain and it’s so draining to the visitor after a certain amount of time. You hurt for them and you just want to scream yourself.

Iris L.

He probably has PSEUDOBULBAR AFFECT. It causes uncontrollable laughing or crying and occurs with various types of brain damage. There is specific medication for this (Neudexta). Read about this and discuss with a specialist.

Iris

Ed1937

Josey, I'm so sorry. It sounds like you are in a corner that you can't get out of. Reading about your beef with the facility, I wonder if it might help to get in touch with an ombudsman? Here is a link for Indiana that might help. https://www.in.gov/ombudsman/long-term-care-ombudsman/overview/ I hope you can get some satisfaction from someone.

ImMaggieMae

Josey, I am so so sorry. I have tears streaming while reading your post. It is horrible that you are having to go through this. It’s no wonder you’re a mess. It sounds like maybe there is a problem with the Hospice nurses too. Hospice exists to provide end of life comfort to the patient and their family, right? This certainty doesn’t sound like that. I would expect them to be sorting through the misinformation from the facility staff and possibly trying to offer suggestions for better care. Are there other Hospice choices? What about medications? Antidepressants? Could he take them while under Hospice? Quilting’s suggestion of a sedative sounds like maybe that could be a possibility? A small dose might just calm him without making him fall asleep. Seeing him crying repeatedly for hours would be beyond upsetting to me. I can’t imagine any of us would not be depressed ourselves being in this situation. I feel horrible for you. I wish I could come up with better ideas.

M1

So sorry Josey. Agree that it's hard to make suggestions without knowing what's already been tried. Agree with iris that he may well have pseudobulbar affect.

terei

I am sorry you are going through this. One point I would like to make is that it is hard not to project the idea that his crying means that he is upset about something. YOU would cry for a reason. HE may be crying because his neurons are firing with no emotional component at all. In fact, I would assume that is exactly what is going on. I dont think trying to comfort him will be helpful to either of you, since it probably wont stop the problem. (If it was me) i would try to detach somewhat + try to ignore the behavior as much as possible for my own mental health. I think the med mentioned above should be given a try.

M1

Josey, I'm so sorry you are both suffering so. And more sorry if anything here made you feel worse. Please let us know how you are doing. there are many of us here who do care, very much. You have been here long enough to know that a public forum has its ups and downs. But I hope you will keep posting.

loveskitties

Josey, I am so very sorry that you felt the responses were critical of your efforts. I am sure they were all written with empathy for your situation and only trying to offer suggestions that came to mind.

Please don't stop posting. No matter how you are feeling at this moment, folks here do care.

Quilting brings calm

@JoseyWales I didn’t mean to be critical of your efforts. You’ve always done a wonderful job. I just couldn’t come up with any advice beyond what I mentioned. I ‘m sorry that we made things worse for you.

JoseyWales

All - I realize most posts were meant to be helpful. I'm just so stressed and fighting everyone to help DH, and like Iris and M1 mentioned, have been told there may be nothing we can actually do to stop this. Also we're back in limbo land of "We don't know what he really has" as it isn't following the path of any regular dementia. But obviously it is a dementia. 59 year olds don't end up in stage 7f on a regular basis.

dayn2nite2

At 7e or 7f, you know where he is in this disease. While it may seem as if this can go on indefinitely, it will not. Allowing hospice to continue exploring possibilities is of course appropriate.

If you are wanting to know definitively what disease he has, then you might want to arrange for a brain autopsy in advance (now) because you will not get the opportunity to do so after death.

Here is some general information on how to arrange for that. The actual report will take months to produce, but it's a way for you to know what disease process(es) are actually at play here:

https://www.alz.org/media/greatermissouri/autopsy_brain_and_body_donation_low-cost_funeral_and_burial_options.pdf

Iris L.

https://alzconnected.org/discussion/comment/183216#Comment_183216

Josey, I'm sorry I wasn't more clear. I did not say that there is nothing that can be done to stop his crying. The people you are dealing with obviously have never heard of PSEUDOBULBAR AFFECT. All they need to do is do a Google search and learn about it. There is medication specifically for pseudobulbar affect. I am not saying that it will work for him, because he is in an advanced state. An as terei stated, the crying is most likely neurological and not emotional. I was not implying that you have not done enough.

I hope you continue to post. You need the support. I can relate. There have been times when I was overwhelmed and I took a break from the boards. But I always came back, because I needed the support. Here is the only place where people understand and actually know things about dementia and caregiving. We are here for you.

Iris

JoseyWales

Thank you Iris. I really do appreciate your posts, always, even though I rarely say so.

I'm still fighting with doctors. I believe we're in a totally unique situation here. Nothing has been easy, and lots of things have been dropped along the way. I'm a highly educated adult, and if I'm having this much difficulty with getting him help and care, I feel for those who don't know how to navigate the system.

White Crane

Josey, I am so sorry you and your dear husband are having to go through this. I know it tears at your heart. I have no advice to give, only know I am holding you close in prayer and sending hugs.

Brenda

Joydean

Josey, I’m so sorry all this has been so hard. Just dealing with dementia is hard enough but it seems you have had to fight for every little inch of gain you have gotten and now still having to fight. Please know we are here for you, I don’t post as often mainly because my dh is advancing ( he’s late 6 with both feet stepping into 7) and I’ve been having some medical issues, but I try to read when I can. What I’m trying to say is please take care of yourself!!

Marta

I’m with Iris and M1, Josey. I used Nuedexta for my husband with EOAD and pseudobulbar affect.

Thinking of you, fellow Hoosier.