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I let moms friends know hospice had begun, can’t really work phone any longer (conversation lasts about 2 mins anyway)
I asked for Xmas cards to brighten up her day, but not to talk about her situation, I wanted newsy gossipy holiday greetings! Not weepy “thinking of you” that would remind her of her situation. Her friends sent cards and pictures. They helped, they gave her something to look at and hopefully reminisce. She seemed to like them.
couple friends continue to pop cards in the mail, which is nice
I’d give her one or two a day rather than right when they arrived. I’d open the envelope for her so it wasn’t a chore
her friends were all glad they had an update on why she’d gone radio silent
Funny story, a woman at my church has Alzheimer's and asked her family not to tell anyone. They respected her wishes, but she started posting it on Facebook and even spoke up during a prayer one time about it. Later, I asked her son a question (since my mother has the same) and he got very upset with me..."How do you know that!" he demanded, I wasn't aware that she asked for it to be kept quiet, she told me about it on Facebook. The disease is unpredictable. My mom doesn't believe she has it, she thinks everything is fine and she wants a new car.
My Mom is lonely also. However, she doesn't want to contact her friends and she doesn't want to see them. She used to occasionally talk to them, however, she considered it too much energy. She needed the face-to-face conversation. She didn't like (and still does not like) Zoom and she had a hard time understanding what people wrote primarily because she couldn't relate to them anymore due to her dementia.
She prefers them to remember her, both in looks and in conversation, as when they got together last.
My Mom was willing to go to Senior day care because she knew no one prior to attendance. She refused to go to the Senior Center because she said, all they talk about is their kids and how they are being treated and grumble about their ailments.
When my Mom went to the Senior day care, there were all levels of people. The first one she went to, many of them slept all day and had to be hand fed. The second one that she went to, had a younger crowd so she enjoyed being there. She found the time there, entertaining. She relayed stories about the gal who ran to the door, each time the external door opened, and the guy who brought a loaf of bread everyday. She chuckled about the gal who would collect all the silverware, napkins and whatnot, and put it in her purse because everyone wanted to know what the lady collected by the end of the day.
If there is a Senior day care available to your Mom, I'd look to see if the program is the right fit.
Sounds like she didn't give you a specific reason NOT to share information with her friends. She may be embarrassed about some things and not realize that she still shares some common difficulties with them. She may not want to seem like she's "needy" and asking for attention.
But if you are aware of people with whom she had enjoyable interactions it might be good to re-ignite the friendship (if she's been out of circulation for a while, they may be wondering about her)
Why not (on one of her better days) bring up a name in casual conversation and check her reaction. "Hey, mom do you remember that lady (or couple) who used to go with you and Dad to the.....?" Whatever happened to that lady that you met at the..... Do you know where she ( or they)went after...?. Then, if she shows any interest, write a short note just to "touch base" and let her help you with the wording. If she objects, don't pursue it.
My mother was the social one in our family. I got her stuffed-full address book when she died. Many names and addresses were there from all over the world. I didn't recognize the majority, but those I knew a bit about, got a note from me to the latest address I could find, telling of my mother's death. I got some lovely notes in return. Some seemed really grateful and full of reminiscence. I wished I had written (or she had) when she was still alive.
but I’d also like to caution you not to have any false hopes either. I hope you have a different experience than I have, but my Mr. and Mrs. had very close family within five minutes of driving and in seven years they visited twice. Once when they thought she may be dying, the second time when they were celebrating their 70th wedding anniversary.
I begged people who lived far away to send an email to the son who could then read it to his parents - never once did anyone reply.
good luck and God be with you and your big heart.
Go for it. Contact the friends and request some cards/letters or phone calls. Telling them about the dementia will help them if they call and notice things aren't quite right with her recall or comments.
Hippo doesn't pertain to you:
Covered Entities:
The following types of individuals and organizations are subject to the Privacy Rule and considered covered entities:
Healthcare providers: Every healthcare provider, regardless of size of practice, who electronically transmits health information in connection with certain transactions. These transactions include:
Claims
Benefit eligibility inquiries
Referral authorization requests
Other transactions for which HHS has established standards under the HIPAA Transactions Rule.
Health plans:
Health plans include:
Health, dental, vision, and prescription drug insurers
Health maintenance organizations (HMOs)
Medicare, Medicaid, Medicare+Choice, and Medicare supplement insurers
Long-term care insurers (excluding nursing home fixed-indemnity policies)
Employer-sponsored group health plans
Government- and church-sponsored health plans
Multi-employer health plans
Exception: A group health plan with fewer than 50 participants that is administered solely by the employer that established and maintains the plan is not a covered entity.
Healthcare clearinghouses:
Entities that process nonstandard information they receive from another entity into a standard (i.e., standard format or data content), or vice versa. In most instances, healthcare clearinghouses will receive individually identifiable health information only when they are providing these processing services to a health plan or healthcare provider as a business associate.
Business associates: A person or organization (other than a member of a covered entity’s workforce) using or disclosing individually identifiable health information to perform or provide functions, activities, or services for a covered entity.These functions, activities, or services include:
Claims processing
Data analysis
Utilization review
Billing
If you don't tell her friends, they might conclude that she is "ghosting" them
She read the obituaries daily, but when the local paper went online only, she was sunk.
You're simply letting her friends know 'how she is' not giving them private health care descriptions. Big, big difference.
And I agree with janice's comments about us putting our fears and anxieties on our folks. Mom would SAY she wished she could talk to an old friend and then when I made that 'happen' she was never happy about it. Probably b/c she wanted to have good memories about these ladies as HS friends, not illness-ridden old women.
Even the one woman my mom felt was her 'bestie'--she died very unexpectedly and when I inquired how long it had been since she had actually seen or talked to this 'best friend'--it had been close to 10 years.
( In this case your mother) or are we doing it for one's own needs ? We always need to self check our own anxieties and needs vs displacing them onto the patient; sometimes this can be done unknowingly and with good intentions.
What do you really think or know to be what your mother would want? It sounds like she has said " no";. so respect that.
HIPAA only applies to covered entities and their business associates.
It does not pertain to private individuals that I can find.
source: https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html
We even see frequent posts here from siblings that are not updated on health information by POA sibling.
My Mom was very open about her life. So I don't feel she minded me telling her friends how things were. Would ur Mom appreciate you say this? Is Moms birthday near? Maybe do the card thing for that. My Mom hoarded her cards. I got her a box where she kept them. She would take them out and sort them.
It will hurt no one and could bring mom much joy and make her feel less lonely.
And I wouldn't give up on trying to get your mom to go to an Adult Daycare Center, as most folks that go there love it.
Most places allow you to bring folks on a trial basis. She won't know if she likes it if she never gives it a try. They do such a great job with those that attend. You couldn't ask for better.