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!
Myself, I would just take a glance and click it off.
I still say, refer him to this forum for support.
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?
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.
There is such a thing as overload. Perhaps they are hurting so much they have lost sight of this. People are desperately seeking comfort when they are up to their eyeballs in caregiving.
Hopefully they will be able to catch on to hints later. I suppose I see both sides. Having said that, I would do the same as you and drop out of the email circle when I felt inclined to do so.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.