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!
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.
Good luck!
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.
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.