Family members are calling Mom (Advanced Alzheimer’s, COPD, CHF) who is in skilled nursing and under Hospice care. I encourage it, but they ask her very complicated questions like what her prognosis is and when is she going home. It agitates and embarrasses her. It’s hard to explain her condition to those who haven’t seen her. She’s blissfully unaware. I try to explain to keep it light and fun, talk about childhood. But I feel like they think I’m hiding things or trying to manipulate her. Thoughts on how to explain to family to go easy?
However, that one person also needs to communicate to 'the rest of the group." A group email works to share larger amounts of information, including an explanation of Mom's abilities and preferences at this stage of her life. Directing them to the Alzheimers' web pages, and to hospice information about end of life care with Alzheimer's disease can help answer a lot of questions. And ask staff/hospice team if they feel she is distressed by these visits, especially the questioning.. Sometimes it is harder for us than for the patient, and can be part of the process for each of them to come to terms with the fact that she is fading away. And, as Beatty said, some of them just won't ever get it!
Take care of you, let hospice help you.
Perhaps talk to all at one time and explain the details of mom's illness and how some questions or conversations may create worry or confusion for her. It's best not to discuss her conditions because in lucid moments it is rather frightening to her. Asking her when she is going home can create confusion because sometimes she thinks where she is now is home and other times would like to return to a home in her past.
Assure everyone that you will provide them with whatever medical details they have questions about.
Always defer to the experts when you can. Family is the hardest to reach because heartstrings are connected.
My husband died from Alzheimer's 3 months ago. At this stage in his illness-where your mother is-, listening to music was the main thing we did as he was no longer able to speak and express his feelings. With music you just go with that without anything being said.
Be well.
It's good you know what's going. Keep up the good work.
Have you explained that Mom is dying?? Do they not know what hospice is?
Have you explained that alzheimers is brain damage and not merely "forgetfulness"?
Hit them with HARD and BRUTAL truths to stop them from being HARD and BRUTAL to your Mom.
I am sorry you are going through this.
I can remember the thoughtless comments I made in my younger years and I cringe.
Then they can ask less direct questions. I haven’t read any other comments but will tell you this. When my mom started getting dementia my brother told me never to say that word again, he was angry. He finally came around and I know his anger came from fear. Please be patient with your sibs, it’ll take each o them their own time to come around to understanding.
love and light
you are doing a great job and I know how hard it is
I doubt very much thst your mom’s relatives are intentionally trying to upset her. It sounds like they don’t know what is going on because you haven’t been keeping them informed as people who have long time personal relationships with your mother. Going the extra mile by talking to each one personally about your mother’s condition will probably work.
Managing communication with family members in a positive, connected way is an essential part of the caregiving role. You are lucky to have interested family members and friends
I read this and thanked God he took my one Aunt before my Mom passed. I could just seeing her doing this stuff and when something said to her getting indignant. These type of people can not be emailed. You have to be blunt because they have no idea how to read between the lines.
Your job is to establish and maintain Mom’s SAFETY AND COMFORT, not to be the family geriatric educator.
If ignorant/naive family become a challenge to her discomfort and actually “agitate”, either the Hospice manager or the facility management (or both), may be willing to “guard the door”.
It’s doubtful that if “loving family” haven’t picked up on your previous suggestions, they’ll be dissuaded by being “educated”.
YOU have NO REASONS to be concerned about what others think. Assume your justifiable role in the driver’s seat and stay there. She needs calm interactions dictated by the person who knows her best.
She’s lucky to have you.
I had to make a few of those calls myself to the "well meaning" relatives who caused my mother nothing but upset when she lived in Memory Care Assisted Living with advanced dementia. These people's ignorance is no excuse for upsetting our mother's and then WE are left to clean up the fallout and the extra tears they cause! I did whatever I had to do to help mom and I didn't care about stepping on anyone's toes because NONE of these family members did ONE single thing to help me. So I'd be damned if I'd sit by and watch them do things to HURT me or mom, nope.
The last thing the elders need is agitation to add to their issues, that's for sure. The goal with dementia and Alzheimer's is to keep them calm at all costs, especially when hospice is on board. That's the message to anyone who wants to call, or their number will be blocked. Don't encourage calls from people who are too dense to understand the situation or who think you are keeping them in the dark 🙄
I'm sorry you're going thru such a stressful time with your mom now. I pray that you have the strength to push out all the noise in your lives right now so you can focus only on what's important. Sending you a big hug and a prayer for peace and guidance thru this end of life journey.
A polite email may work for some.. others need good firm chat to knock some common sense into them 😁
Ask for any hand out handout/brochure that is suitable to share via email with extended family members that are struggling to understand.
The aim will be a little education for them.
I get that you care deeply & wish to spare Mom awkward conversations, but you can't control what they ask or talk about with Mom of course. Offer a little education + a little advice to be light as you said, then let it go. (As some folk will stay in ignorance/denial no matter what evidence is before them). You will need your energy for bigger things.
Strength to you for the road ahead.