Feeling Attacked by Well-Meaning Friends

Kimmyw

My Mom was diagnosed with Alzheimer's almost a year ago now. She lived alone and was really not doing well and she lived 100+ miles away from me. I took some advice and found a really nice MC facility and (thank goodness) put a deposit down. I dreaded the thought of driving my Mom 100 miles to the MC I had reserved for her, but then she fell and broke her hip, so the decision was taken out of my hands.

However, now that she has rehabbed pretty well from the fall she thinks she should go home. She tells all her friends that she wants to go home. I can understand that, but now her friends are questioning me. "Why can't she live in a condo with help? Why can't she be in Assisted Living? I know know someone with AD that lives at home" etc. I have been told that once they have an Alzheimer's diagnosis, they can't live in AL. More to the point, her LTCP won't pay for anything but 24/7 facility care. I'm tired of being judged and second guessing myself. The guilt is bad enough without that.

I have POA (I will post about that in a separate post) and am the only child. But I am feeling like they are trying to challenge me. A non-family member can't really do that, can they?

DCCEPEK

Please do what's right for you. Try to stay positive. Their can only be one captain of the ship. Do what you gotta do for the both of you. Hugs.

Bebobra

Hello @Kimmyw

It is a difficult enough on this path of life without people adding their opinions especially when they have no idea what it is you’re personally walking through.

I hope you can get your Mother where she will get the best level of care so you can love her through this journey.

psg712

They can say anything they want to, but if your mom made you her POA, you are in charge. When she had decision-making capacity, she chose you and entrusted you with the authority to make decisions in her best interest at a time when she could no longer do so herself.

Her friends mean well, but their comments are not helpful at a time when you are making the hard choices. They are speaking out of their grief at seeing someone they love move away from their community, and maybe also out of the fear that one day they could also find themselves in such a situation.

M1

Welcome to the forum and know for sure that you have done the right thing. The presumptions people make are astounding---we see it all the time here, unfortunately. Hard to hold your tongue when they make your job harder, and to give them the benefit of the doubt, they probably mean well. But if they are making things harder for your mother, you don't have to let them visit or even talk to her on the phone. I had to put my foot down recently with some folks from my partner's past just "showing up" at her MC to visit without checking with me or talking with me (and I'm talking people whom she hadn't seen in five years and doesn't even know any more). Make no bones about your choices. As my partner used to say in her graphic Texas language, "everyone has two things, a**holes and opinions."

Anonymousjpl123

@Kimmyw welcome to the forum and it absolutely sounds like you did the right thing. Absolutely. Many of us have had to weather the judgments, misperceptions, and questioning from other perhaps well-intentioned but utterly clueless friends/family.

the misperceptions are mindboggling.

• Most people who are not the POA/full-time caregiver do not not know or realize the extent of someone’s progression. You see it because you’re closest to it.
• People who are not close to someone with dementia think all kinds of things about MC - everyone just wanders around, it’s “giving up,” etc. could not be farther from the truth. There are more staff, more care, usually nurses, often doctors. Your mom NEEDs that.
• No, they do not have any authority whatsoever.

You’ve taken on a great responsibility and sound like you are putting your mother’s safety first. I heard all of the things you are hearing and wasted hours on illogical guilt. Talk to people who are walking this walk. Ignore them. You did the right thing - medically and financially - for your mom.

housefinch

Keep repeating to yourself: “They don’t live this every day. I do.” You are doing the kind, loving, and safe thing. These commenters are uninformed, regardless of how much they care for your loved one. I’m the stepdaughter of our PWD and my mom is his caregiver (that’s why I’m in these forums—I’ve learned a ton that’s been incredibly helpful). We have a different situation in our own home, but similar frustration—-my own mom actually says maybe the doctor was wrong saying our child has autism (trust me, doctor was not wrong). Sometimes people either can’t imagine the realities of everyday living with dementia or their denial runs deep. Sending you hugs.

Emily 123

Perhaps they mean well, but they have no clue. And it's really none of their business how you choose to keep your mom safe. The people here know intimately the challenges and frustrations involved, and nobody here is sticking their oar in, telling you 'Well now, Kimmy, let's not be hasty!'

You do what you need to do to keep your mom safe. There's a big gap where her more recent memory used to be, so she has no ability to recall any struggles that the dementia's causing.

harshedbuzz

@Kimmyw

Hi and welcome. I am sorry for your reason to be her but so glad you found this place.

To my ear, it sounds like you are making prudent and loving decisions on behalf of your dear mom. Kudos to you for the strong work so far.

Sadly, your situation is not unique. I endured the elderly peanut gallery's opinions when I moved mom and dad out of FL to live near me. Ugh. The week I went down to actually get their personal items out of the house and sign the papers to sell it was rough. So many opinions and so many requests for "something to remember mom by". The accusations and unrealistic suggestion were completely out-of-line. Let's just say the "silent generation" isn't when one of their own has their autonomy lost to dementia as if the disease were contagious. IMO, this is more about their fears than concern about your mom's welfare.

I stopped answering their calls. There was one so troublesome, insisting mom could come for the season while I kept dad, that I blocked her from both their phones. Most of the others drifted away within a year of their move. You don't have to take their calls. I suspect once she's moved out of their orbit, calls will tail off.

I also had an aunt and uncle who were too free with their opinions. Aunt who justifiably found dad tiresome, wanted to stop medications for heart disease and T2D and stop the ADT that kept his prostate cancer out of his bones. Uncle, who did a 45-minute drive-by every 6-8 weeks at a time of day when dad was at his best, played devil's advocate with me over every decision mom made. These two were entitled to an opinion but did not have decision-making rights. I validated their feelings, and reminded them of that as diplomatically as possible that mom was calling the shots.

Good luck.

HB

eaglemom

Welcome to the message board. Sadly what you are going through is all too common. It seems everyone and their dog has an opinion, and you haven't ask anyone's opinion!! I can relate because I'm an 'only' also. We don't have siblings to discuss these things with - which in some cases is good & here it's not so good. What you have to do is put your mom's welfare and safety first 7 what everyone else says as a distant headache. Tune those people out, they don't have your mom's best interest at heart or they wouldn't question you. They 'think' they know what's best, but they don't - you do.

Don't question your decisions that you've made. You made it in love for your mom - it doesn't get any better than that.

eagle

BassetHoundAnn

This is common. Everyone has an opinion but no one except the caregiver has a clue. A visiting friend rearranged mom's entire kitchen while she was in AL. She insisted she was making things more convenient for my mom. The reality was my mom was pulling things out of the cupboards, including food, tossing things on the floor and putting everything in the trash because she couldn't identify what items were. So I tucked things on high shelves my mom couldn't reach, or in the closet she never opened.

Another friend paid a surprise visit (unbeknownst to us) while my mom was in the hospital. She convinced management to let her into my mom's apartment. She left a whole bunch of perishable food, including bags of fast food, on the counter. A week later when I went to retrieve clothing from my mom's apartment.... Oh my.

Managing my mom's social life the first year I cared for her was interesting to say the least. Eventually, sadly, most of the well-meaning friends and their advice vanished.

Bunnyboo

Do what's best for you and her. Don't let guilt over ride your need too keep her safe.

towhee

Hi Kimmyw. This is a hard and complicated decision to make and no one makes it lightly. I am sorry you are feeling judged. From your post I could not quite tell if your mom is still in rehab or in MC now. If she is still in rehab, a couple of administrative things, has the long term care company agreed that she meets the criteria for starting coverage (someone posted recently about having trouble getting their long term care company to pay their facility bill) and is there a room currently available at the MC that you are paying to hold or did your deposit just put you on the waiting list.

I am going to approach this in a slightly different way, It is possible that you might be able to turn the well meaning friends into a positive for you. To have multiple people approaching you like this I suspect that your mom is showing her friends a lot of distress. If you can educate them a little bit, explain a little bit, they might be able to help calm your mom down, or at least not make things worse, which will make the situation less stressful for you. Try writing them a note, or e-mail, saying something like- I so much appreciate your friendship with mom, This has been such a hard decision, unfortunately the doctor has said mom can no longer live alone and her long term care policy will not pay for home care. I have done my best to find a place that will fit her needs, please continue to be her friend. Since it is MC that they seem to have a problem with and not AL maybe you might find out why and address that. Possibly a friend or counselor might help you write it. I know this seems like it might not be worth it but it might help your mom adjust.

MC, AL, IL, CCRC, it is such a word salad, and what each particular facility offers can differ so much. When I was looking for my mom I found Assisted living that was practically Independent living, with apartments and everyone expected to be at the level where they enjoyed mahjong and book clubs, then there was assisted living where you "aged in place" so long as you could walk to dining room upon admission you had a good chance of staying there thru hospice, where 75% of residents had some level of dementia or other cognitive impairment. The MCs ranged from "MC lite" that made you leave if you could no longer handle your own incontinence care, to places where 70% of the residents looked like they required skilled care. I don't know of any state where they restrict dementia patients to memory care, the facility usually decides what they can handle. The rules in my state of what can call itself a memory care is that they have to be a locked facility and offer slightly higher staffing levels. That a facility can handle a particular person's physical care needs and their socialization needs (activities at their level and someone at their level that they can talk to) is what is important, not the particular title of the facility, although in general if a person with dementia is stage 5 or more, you will probably find a memory care that is a good fit more easily.

You asked if the friends could "challenge" you. This is very, very unlikely. Although since a diagnosis of dementia does not automatically make one legally incompetent, if your mom is still very early stage 4 it might not be totally impossible for her to revoke the POA.

I hope the situation improves.

Marta

Anyone who doubts you could be invited to spend the day with your mom, alone.

psg712

Yes, spend the day with her alone and WITHOUT any assistance from staff. See how she is able to bathe, dress, get to meals, brush her teeth, take medication, participate in group activities...maybe even make an appointment or pay a bill! OK, perhaps I'm going to extremes here, but I am ranting in your defense ... have definitely been questioned/judged about moving my mom out of her house to AL and later to MC. Hang in there. You are doing your best for your mom.

Motochris

I'm not even as far along into the entire process as you (I'm still working on getting the diagnosis) and I'm feeling this along with the frustration of my mothers friends trying to tell me "what she needs". I know they mean the best but it's sooo frustrating at times. As an example, my mother is VERY concerned about getting her taxes done. She mentioned it to me at least a dozen times on our last trip to the Dr. I told her I had it all handled and what the plan was. Her taxes are at the tax preparer now. Her friends are calling/texting me "Your mother needs help with her taxes". No...she doesn't. Her taxes are taken care of. "Your mother can't find her tax forms, I'm helping her look, do you know where we could find them?" Yes...at the tax preparer's office. She and I took them there a few days ago. ---and on and on--- Many times it's almost accusatory, like "Why aren't you helping your mother?" when I've been doing sooo much.

I'll be following along and reading everyone's stories...and hopefully learning as well. Good luck to you all.

eaglemom

For the most part people mean well. It's how they present it that comes off badly. They aren't exhausted from handling absolutely everything and don't have a clue what caregiving truly is like. Therefore, they insert their opinion like its something we've never thought of.

It's very difficult to just ignore their comments / suggestions, but that is how to best handle it. I have found using the phrase "I'm doing the absolute best I can do for mom / dad. I'd welcome you to help me all day next Tuesday." Its very studdle, but it gets the point across.

Take a deep breath and do the best you can - that's good enough.

eagle

Kimmyw

Thank you all for your comments, it's feels very good to not be alone. I have come to realize that a lot of these comments from friends come from a place of (1) grief, over the loss of their friend as she once was and/or because they are all contemporaries, (2 ) fear, that it will happen to them. That doesn't make it excusable, but I can at least understand where they are coming from. I just need to insulate myself from the worst of them and continue on.

J-Twin

Kimmyw,

My mom's best friends have also questioned my family's decisions and part of this is based on what my mom tells them. My mom thinks she's still capable of doing certain things and/or doesn't remember why we made various decisions so she complains a lot to her friends about me and my family. This created a skewed, one-sided viewpoint to her friends.

I work closely with a care coordinator to help me as a caregiver. I asked her if we could do a presentation to them about Alzheimer's, dementia and include some more personal, specific details about my mom's situation and the reasons why we made certain decisions. I reached out to my mom's friends and they were very receptive (see the second paragraph below as to what I said to them). While we have yet to present the information to them, I'm confident it will help them better understand the circumstances. Maybe you could do something similar?

"We'd like you to join us in learning more about dementia. We feel that by having information that pertains specifically to mom, we can all support her better. We recognize it can be challenging to navigate conversations with her, especially around why we enacted the Power of Attorney and the specifics this entails so we would like to have a conversation to ensure it’s clear as well as provide a forum to ask any questions you may have."