Daily email sent out to family and friends is demeaning; any advice?

I still say if the emails and details are so hard for the siblings to read, then just imagine living those details each day. What the hubby needs is help, not criticism and ignored emails. If he had more hands on help and interaction from people outside his current living situation, he may not have to document the events. Help him.

Block his emails.

I think that some of his only pleasure is likely composing these things, and while they would be demeaning to his wife if she read them, I doubt she DOES read them, and would just suggest you stop reading them as well. It sounds as tho she is his entire world. If you would like to suggest that not only are his emails an invasion of her privacy, they are quite disturbing to read, and you would like to suggest he get the help of a licensed social worker who can help him sort through what he can expect in taking on the daily care of his wife.
Myself, I would just take a glance and click it off.

Has anyone in the family gently told him exactly how you all feel? Or has anyone called a family meeting to discuss this issue with him? Lastly, it seems that on his part there is either a knowledge deficit or he is in denial regarding her condition. Perhaps it is time for him to have a conversation with her physician regarding her current status and long term prognosis. I'm wondering if loneliness is a contributing factor to the continuing of the emails? Maybe if he can get out, a Parkinson's support group or a caregiving group for spouses whose spouse has a chronic disease may be helpful.

Nuclear option: hit REPLY ALL and clearly state how you feel i.e. "Pastor, your emails divulge private and sensitive information about my sister, who has advanced dementia, and I cannot bear to read them anymore. I also do not need to be reminded by you to pray for my sister. Please remove me from your email list."

It is possible that by sharing so much that he is somehow asking for other's help, as he is handling this by himself.

Llama,

I feel for the man too. He needs support. He’s using the emails as journaling or group therapy. I suggested that she send him to this forum so he could receive support of some kind. Sadly, sometimes strangers on a forum will offer suggestions more than family and friends.

He very well may have some character flaws. Don’t we all for that matter?

I feel badly for this gentleman. He perhaps is doing the best he can. Of course there is no way that he "can get into her inner world" because he is not of like mind, praise God. Perhaps he can amend the email to include a line IN RED "URGENT," which will alert the recipient that it is critical to read. He could put a statement to say something akin to "my emails will still be sent, but you don't have to peruse each one unless it's IN RED."

I understand that this man desires prayers so he sends detailed emails out to everyone. Many are comforted by prayers. I also believe in the power of prayer.

Having said that, I am also realistic and believe in acceptance of a situation. I had a close friend at one time who often said incredibly unrealistic statements like God was going to allow her to live forever because her special needs son needed care all of his life.

I told her that would never ever happen. I told her that she was a mortal human being like the rest of the world and would eventually die.

She cracked up. She was down to only her mom and me sitting with her son. When he became abusive I told her that I could no longer sit with him. He towered over me and weighed almost three times what I did. I ended up being black and blue after him attacking me. He attacked his grandma too. My friend was attacked constantly. Poor woman tried to kill herself. Her son’s dad had him while she was in a mental hospital after the suicide attempt.

Caring for anyone around the clock is just too much for anyone! People must learn to accept help. For those that do pray, I remind them that even Jesus accepted help carrying his cross. He also accepted his fate. We understand His purpose for His death. As Christians we believe it was to save our souls.

When it concerns praying for loved ones it’s so hard. We want that miracle! But at some point we may have to say that a miracle won’t happen and we have to accept the inevitable reality before us no matter how hard it is.

Whatever happened to people picking up a phone and calling a person and saying, is there anything I can do to help you with Aunt -----, or sister ------. Can I bring you a plate of food or better still, just do that. Unless you live so far away it's not feasible. Yet you come to a support forum for caregivers and say how annoyed you are of your sister's husband for his daily, sometimes twice a day update of your sister? this seems like the opposite of what is happening with a lot of people as a lot of siblings are not even kept in the loop. Yes, this is excessive but give him a break and acknowledge him and thank him. this is jmo.

I have an uncle with cancer. His daughter sends out twice daily group messages via Facebook Messenger. These messages are extremely detailed. Much more than many family members want to know. We drop out of the groups and she adds us back. About 15 of us have now blocked her from our Messenger and Facebook. She just wouldn’t get a clue that she was sharing too much.

I've walked in this mans shoes all the way to the end with my mother for years, and during the last 6 months used texting to keep my siblings updated on a daily basis and they never came. I didn't ask them to come and relieve me and they sure didn't. I actually thought they would perceive my need for help from the thorough picture I painted but they never did. When I shot up a flare early in the last week of her life and the staff was telling them she's not going to make it much longer they planned they're arrival for the weekend from Maryland and New York to where we were in Virginia Beach and they didn't make it in time. I even told them they wouldn't make it. She never saw her children the last year of her life. Then they all wanted to come to her house, and see the will 24 hours after her passing. I told them no. I need time to grieve. They alienated me for that and when her lawyer emailed her Last Will and Testament a week later they realized that she left me basically everything she owned and they haven't communicated with me since her passing in june. Give the guy a break and go help him. He's just a man not a God.

Agree with those who have said this is his way of communicating and asking for help.  If these emails go to family, he has no other way of reaching out to anyone about what he is experiencing.  And, if I were in his shoes and feeling isolated, this helps him cope and maybe find some help.  Family needs to reach out to him to ask what they can do for him and her to give some relief.  If he is writing this often, the answer for him can't possibly be "I don't need any help."  Of course he needs help, a friend, conversation, and just a little relief.  The family knows who is getting these emails - together, they might come up with ways for him to get some relief, either in a timely visit by someone, a day or some hours off.  Also, it sounds like he may be with her 24/7 - we all know how isolating this can be.  Seeing some faces who care about both of them would be comforting to him at this time.

It seems he may be fearful of his spouse being forgotten before she is even gone. Pastors spend a lot of time (A LOT) listening to everyone else's requests for prayers but seldom do people ask how they can pray for their Pastor. Maybe he doesn't feel he can share this info within his church. I wouldn't blame him.

I believe in being honest with kindness, so if I were receiving those emails, I would tell him we are praying for her, thank you for the updates, but can you please make them 50% briefer? Or only once per day? Also, ask how you can pray for HIM.

Send him the link to this forum, and links to articles about understanding dementia and Parkinsons. Maybe if you start aiming several emails a day at him, some will stick ;-)

Someone below commented that pastors ought to know better about dementia. I disagree. I think precious few people "know about" dementia who have never experienced it personally, especially with their own loved one. Have mercy on him as he navigates this long, lonely, sad path. Ask how you can practically help him. Even if he doesn't want help, just knowing someone offered goes a really long way. Blessings!

As a Pastor’s daughter, this is exactly how my Dad would have thought. Everyone has to be updated on everything, it used to drive me crazy. So many things I kept from my family because I knew the whole church would know and discuss.

He may also be in denial. My adopted Dad was like that with his wife. Two severe strokes, unable to walk, read, or feed herself - but he told her she wasn’t trying hard enough. She could come home as soon as she put some effort into walking. Why was she laying in bed? Was she faking being sick? So very cruel. But he didn’t think he was doing anything wrong. She needed the encouragement. Gah!

I don’t know if this fits your scenario, but it’s something to think about.

It sounds like he may be reaching out to have real conversations with people outside of what is happening in the house. He is actually sharing the details of his day and those details may not be what you want to hear. Some of the conversations he has with her may not be what he wants to hear either, but he is in that prison with her. It's a little far fetched to latch the privacy issue as a means of making his emails inappropriate.

Actually, there probably are conversations with her that would make it look like she is faking it. Read other posts from those dealing with dementia.
I would ask - how involved are you and the siblings? Do you give him time off. Do you visit so that he has someone other than a broken brain to chat with. Instead of being 'distraught' or cutting him off completely - do something to help. She may be his wife, but she belonged to the rest of you first. His life is tough enough. Be the person who reaches out and is physically proactive in taking some of this burden off his shoulders...or at least help to make it a little easier to live with.

Let his write his letter if it helps him. If you have no interest in being involved, then just delete them.

As a Pastor he should be very aware of personal privacy. Being aware of Dementia is another thing. Unless he is fully trained in counseling others, I doubt if he has a clue. You learn by experience. Prayers are not going to help her. The desease is not reversible. You can pray for her comfort. That she has more good days over bad. Or, just that God be with her and comfort her family. Its he who needs the prayers. Pray to make him understand that these emails are going to turn people away. Before his sermon he can tell the congregation that she had a good week or a bad week and to please keep her and our family in your prayers that God will help us thru this horrible desease.

All ministers have someone above them, a Bishop? Do you feel you could call him/her and voice ur concerns. Where I live, we have sister churches in towns near us. Talk to a minister of the same denomination in a nearby town. They all know each other. Again, tell him/her your concerns. Explain you don't feel he understands the workings of a Dementia mind. He expects things out of his wife she can no longer relate to or understand. That he is pushing people away.

Ministers are human. He really needs someone who has been thru the Dementia journey to sit down and explain to him what to expect.

You cannot control others. He sounds like a potentially burned out or overwhelmed caregiver. You might send a final message saying what you have said here, that it violates her privacy and makes you uncomfortable and so you are going to no longer respond and/or block him. If he has no audience he will have no reason to write it...Maybe there are so many who care and he got tired of spending his day responding that he did the mass email update?

It sounds like this gentleman is overwhelmed a little and not fully knowledgeable on dementia. He is dealing with the person he "used to know" and not the one she has become. This is very stressful on a loving spouse. I would direct him toward a support group and just have some very honest communication with him. I hate to say it but the attention needs to be on your sister and him, not how the family "feels" at this time. What he is dealing with is devastating and I would give the guy some slack. JMO and good luck to you.

Since he is a pastor, perhaps his issue is that everyone comes to him for solace and advice, but no one provides it for him? Maybe have a face to face with him and ask what you can do to help him, beyond prayers. As others have noted, perhaps he is lonely (friends and family often tend to distance themselves when someone has dementia), maybe he needs a break (invite him out for coffee or lunch - help to break up a day of watching what his wife is doing)... there are many ways one can try to alleviate the isolation and stress/strain of being the spouse left behind.

At least emails don't interrupt you like phone calls and can be ignored and/or deleted without reading them. As far as privacy, my only concern is that email is NOT a secure method of communication, but so long as he isn't posting any sensitive information (like SS#, bank acct info, etc), what harm is there? Sure, sister deserves some dignity, but none of this really impacts her. IF he is treating her rudely for any behavior she exhibits, then y'all need to gather up info on dementia and give him a schooling - many people do NOT know what dementia does to people (regardless of what their profession is) and NEED to be informed. If that doesn't change anything, then it is what it is - you can't change his stripes.

Delete is often my favorite button 😉

I agree with just deleting/not reading the e-mails, as it sounds like they are disturbing to you. However, I would continue to pray for them both, and maybe send an e-mail once every so often letting him know that you are thinking of and praying for them, and see if there is anything they might need, etc.

I understand where you're coming from, and like others here, I can see both sides. Dementia is very hard and very upsetting all the way around, to both the person suffering and their loved ones.

When my mom started developing dementia, and even at times throughout caregiving for her, I would wonder the same thing, is she faking, being manipulative, etc. She also suffered from a personality disorder and had dealt with mental health issues for a long time, so it was all so confusing. They can have good days and bad days, and it's just hard to interpret what they're feeling or to be able to understand why they're behaving a certain way.

Did I misunderstand this man is a pastor?

I wouldn't ask him to stop it may very well be his way of coping. Don't open or read the emails until you wonder how she is doing. Be grateful that he wants to keep you updated, albeit ad nauseam. Send him an occasional email letting him know you are praying for them both. It may be his way of asking for emotional support, which must be very hard for him, especially when considering his position. He is supposed to support others through all life's challenges.

First of all, you would want to simply talk to her spouse and let him know just how upsetting him broadcasting your sister's condition to the world is upsetting her family. If he understands and still ignores, it makes one question his judgement to care for your sister. It also makes one wonder if he is simply trying to get "likes" off of facebook out of your sister's expense; attention-seeking activities by exploiting a vulnerable person is really unethical.

You COULD try filing a Health Information Privacy Act complaint against the spouse but I do not know how far it would go, since someone is making medical decisions for your sister. Does not hurt to try.

IS he using social media? If this is the case, another alternative if he is using Facebook or Twitter is to report the posts as harassing -- they may suspend the account(s). Maybe. Social media can be very cruel because photos cannot be taken back, and not everybody is understanding--people can be cruel.

To file HIPAA complaint here is the link

https://www.hhs.gov/hipaa/index.html

Here is some information on the HIPAA law
https://www.utoledo.edu/offices/compliance/Privacy_FAQs.html

If he is going to church and has a pastor--try talking to the minister and let him know how upsetting this is to the family, and maybe--just maybe--he will speak to the spouse but offer prayers in church without any kind of social media or email blitz.

I am with Ms Randall on this. It may seem like too much information for everyone else, but perhaps he is just doing the best he knows how to do. We have to remember that pastors are people and they are generally givers and leaders. Being in a position of needing help, he may not know any other way to show he’s struggling. Also, he doesn’t get the full grasp on dementia, thinking she’s somehow being manipulative rather than recognizing how dementia manifests. Instead of being exasperated with him, try to reach out. Give him a day off. And offer some information on dealing with the disease. They both need you.

A pastor should know better. He definitely should know that it doesnt take a play by play email to ask for prayers....ijs

Probably coping the best he can.

Since you have already voiced your concerns there probably isn't a lot more you can do. I can pretty much guarantee that anyone other than immediate family who is getting that amount of inane emails has already relegated them to the junk file or at least tosses them unread, unfortunately as family you probably are afraid of missing something important if you do the same. I would bluntly tell him that you only check your email weekly and ask him to be sure to contact you by phone if there is any change in her condition (a reminder of the boy who called wolf story might be appropriate), and that you certainly don't need to be reminded to keep your sister in mind.

It sounds like he may have intentions of updating family and friends but it has turned into journaling for him. If he is intentionally saying inappropriate things I would not like that either. Not sure what I would do.

Therapists recommend journaling. It’s a good thing but it’s done privately.

Does he have others to confide in, in person or has emailing been his only form of communication? Is he lonely? It may be his way of crying out for people to listen to his feelings. I’m sure he is frustrated with the circumstances and may not be able to articulate how he feels so is inadvertently saying inappropriate things.

He’s struggling with emotions. Who wouldn’t be? Caregiving is never easy. Doesn’t matter if they are in one’s home, a facility or living independently, it’s all hard. So he needs others to share his emotions with.

Why don’t you introduce him to this forum? He may benefit from others going through similar circumstances. He may enjoy giving us his input on the situation and not feel so helpless.

This is a touchy area. I understand how you feel but as a former caregiver of a Parkinson’s patient I see his side too.

In any case, just politely speak to him. Bear in mind that he is dealing with a lot so be gentle even if you’re frustrated.

Best wishes to your family.

Some of us have block his emails.  I just feel for my sister and wish I could protect her.  It is really beyond my control though