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My sister has Parkinson's Disease with dementia. Months ago, she had fallen and went into the hospital. Spouse started an email chain with daily and sometimes twice daily updates. This has continued for months and her family is feeling it is quite demeaning to her. Email has daily updates on how well she ate that day. In one email, he claimed he asked her if she was not eating on purpose and she said, "sometimes". He has also accused her of "punishing him" for not eating with her. He says the purpose of the emails are for people to remember to pray for her, but, often he writes about what he does too. How can we get him to realize that he is not protecting her privacy and making her look like she is faking? We are very distraught over this. He often says that she goes into her inner world and once she agreed that she would do this less. How can she agree? She has dementia!! Help!

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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.
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CarlaCB Dec 9, 2019
I had the same reaction, NeedHelp. He is trapped in this awful situation by himself and maybe he feels the need to share what's going on for him with other people. People who might care about him, since they care about her. For those of us in caregiving situations, the sense of isolation in our private world can be overwhelming. It's understandable that the recipients of these disclosures may be uncomfortable. It may seem like too much private information, or it may produce twinges of guilt about how much aid and support is or isn't being given to the one(s) in need.

I know that when I am asked about my mother's decline and death, or my sister's, I still find myself going into too much detail about my experiences, telling the other person more than they probably wanted to know. These are experiences that no one wants to be alone with, yet all too often we are. I have no suggestions really - just sharing how it feels to be on the other side.
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Well, tell him what you've told us! I'm not sure you'll be able to make him understand that what he's saying comes off as demeaning, though. He's likely trying to make everyone see what he's going through on a daily basis.........a blow by blow description of his agony in caring for his wife, you know? That's what it sounds like to me.....he wants pity for his role as a care giver. The man obviously needs some education in dementia, to say the least.

Good luck!
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FabioJack Dec 4, 2019
We have asked him to stop with the emails and told him that everyone does not need to know her daily eating habits and what she says.  He feels he needs to continue so she is in everyone's thoughts and  prayers each day.  We have said a weekly email asking those to pray for her would be more appropriate.  I am worried as he is blaming her for faking and punishing him.  Thankfully, she is in a memory care facility and he is not caring for her full time.  IDK
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Probably coping the best he can.
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Reply to MsRandall
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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.
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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.
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Reply to care4dad
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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.
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Reply to my2cents
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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.
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NeedHelpWithMom Dec 9, 2019
Wouldn’t that be nice? I would have given anything to hear that as a caregiver. Doesn’t happen though. Not for many people. They stand alone and it’s tragically sad.
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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.
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Reply to Samsung137
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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.
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Reply to Harame
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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.
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Rbuser1 Dec 11, 2019
Yes, help him. I agree.
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