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Dealing with advice from those who don't know this journey
I have a few well meaning friends who tend to counsel me about what I should be doing / how to do it differently / and placate me with inspirational sayings. The undertone is always that I'm a little off balance to be so involved and to feel so rattled. I'm also often given advice based on their experience with their non-dementia parents... "she won't even miss you if you don't go".
I have learned to bite my tongue as I know that this journey sucks the life out of a person (both the PWD and the caregiver) in a very unique way that most people don't get. But sometimes it just bugs me to hear people rattling off on their 'I know best; listen to me; there there now' throne.
Not to mention those who say “wow, he seems ok” or “he seems fine,”—-after a 5- minute encounter in which DH said literally one word, “hello,” then just nodded periodically.
Or, “he looks great, I can’t believe he’s unwell/Alzheimer’s” etc. —after I got him bathed and dressed, hair and nails cut, brushed teeth, etc, Same routine re: one word and nods..
For close friends who didn’t know and/or didn’t “get it”, I had took a very assertive approach of “I love you, I value our friendship and appreciate your concern and support. And this is what my/LOs life is like on a daily basis”. And then I tell them - carefully, gently, and full disclosure - what my experience is. And what I need from them
And nearly every time, the response is silence, followed by “I had no idea what you’ve been going through”.
People beyond the “inner circle” get a similar speech, with less details
It’s been fairly effective for me.
I like the little speech idea. Just as there are relatives and friends that remain in denial when actually faced with this disease, there certainly will be friends we have that have no idea until they are confronted with it.
A little story: One day I was with my mother at the grocery, and we ran into a good friend who was also with her mother. We could tell both women seemed familiar to one another and said hello and they tried to begin a conversation while I gave my friend a hug she whispered in my ear that she would like to throw herself into traffic. Did I see that her Mom has a package of ground beef? She doesn't have a stove to cook it on but she insists she has to have it! Now my friend has an identical twin so after we left the store, my mother asked the names of the twins, and which one did we see more times than I can count over the next hour and a half. This topic just reminded me of that for some reason.
I have a brother in law who likes to tease and he tries to tease my mom- hey mom, that's like your third glass of wine, make sure you aren't driving (she hasn't driven in two years) or Mom, good think you don't drive anymore!! Hey, Mom, thought you didn't eat chicken (as she is eating a wing)- (she was pretty strick but lately has chicken so shut the eff up!)
She gets these weird looks in her face, like "driving?" Did I drive? I have told him a half dozen times, don't mess with her, just chat with her about the weather, the kids, some flowers you see, your dog, something in the "now" don't try and be cute and clever, next time he does it I will kick him in the shins, though wish I could kick him higher
My uncle is the same way. It is SO FRUSTRATING. He's always thinking he's the most hilarious person on earth. He still doesn't realize what is going on. Tonight he was over and tells my LO "How are you going to remember to make that sourdough bread?" I gave him a look so evil. "DON'T YOU DARE TELL HER THAT. FOR GOODNESS SAKE" was also being sent. He shriveled into the floor. It's my biggest pet peeve when people ask if they remember something or Remember, I told you that. Remember, Remember, Remember. Literally shut up. It's not helping and it won't help them remember. All you are doing is frustrating and agitating them.
the persons with their superficial advice need to have the experience I had. I thought I understood what my father was going through with my mom, until he went into the hospital and I went and stayed with my mother around the clock for a few days. I found out the meaning of the word "stress".
and I have no superficial quick answers to offer anymore.
"I can't help but think he'd get better if he made changes to his diet," said my SIL.
"I read this study that said bicycling helps reverse symptoms," said another SIL.
"There's this doctor that does bloodwork and then gives you all natural supplements and he's cured cancer. You need to see him," said same SIL that wanted to change our diet.
I've also heard we're not praying enough.
I'm always polite. I don't dare say what I really want to.
I do a similar thing as SelEtPoivr - give as much disclosure as I can to my inner circle, and less info to others. It's worked pretty well so far.
One of the things I fear is that my friends and I discuss my sister's AD too often, and it gets in the way of other topics that we might want to discuss in our limited time together. I'm usually so busy with work and helping to take care of my sister that I don't see friends often. They're trying to be helpful, I know, but for a one hour lunch I'd like to not talk about AD.
I'm getting ready to try something new (ish) to try to solve this problem. My friends/family have the tiniest social network ever (none of us use facebook), and I'm going to use it to set up a thread where I give updates, and friends can ask questions. We'll see if that helps.
My aunt, who told me that IF ONLY I would force my mother to take a 4-mile walk daily “she’d get better” is the same person who told me that my email updates were “depressing.”
I replied to her “I’m so sorry my progress reports on your youngest sister are depressing for you. Would that be depressing like “changing your mother’s diapers” depressing? I will solve the problem by no longer sending updates. I’ll just let you know when she passes away. Love, dayn2night”
And she heard from me when that happened.
I do daily emails to my brothers with details of what is going on. That doesn't stop the brother who lives hours away from saying, after he breezes in for a visit, "she seems fine to me." However as our mother worsens, this is happening less.
My other pet peeve is that they think the assisted living is taking care of everything and that I somehow "need" to be doing this. (Colostomy is on me, according the AL).
Nothing I can do about this honestly.
I do periodic emails to about 20 relatives and family friends, particularly when there is a crisis in health, and that saves a lot of phone calls or individual emails.
They seem less apt to judge and more apt to send "bless you for what you are doing" type of thing which I don't like either. I am doing what is normal, and far less than those of you who are living with your LO.
I had one friend send me an angry rant about how I didn't need to be a perfect daughter and should be doing art of taking trips or something. Well, I answered that if she didn't value my judgment, we could stop being friends, basically. She apologized. It was, it turns out, a feminist perspective based on the experience of her sister-in-law, a novelist, who was too tired by caregiving to write. Not my problem.
For female caregivers here, someone sent me an article that said we are raised in a culture of empowerment, while also being raised to take care of everyone's well-being. This conflict affects mothers as well as caregivers. We are judged no matter what we do as a result of these contradictory pressures. (Happy Mother's Day!
I don't share much anymore with anyone unless they are a caregiver too. People's eyes glaze or they step away. If I present positively and don't talk about it, things are fine with others. That is how it is with death, divorce and illness.
There are support groups and online forums like this, and if we are really suffering, therapists. In the meantime, fatigue makes me less reactive to misguided advice. Too tired to care!!!!
On a personal note I think this is a very therapeutic thread. No one and I mean no one knows what its like caring for our LO's. Family, friends and aquaintences aren't walking in our shoes. I've thought about this subject a lot (my MIL thinks I 'caused' this and always asks 'is he getting better?') My standard answer when someone declares how good he looks, etc is to thank them. Yes thank them and say that I'm doing the very best I can for him. If they ask anymore or are trying of offer advice I just ask them to come spend 3 days with us - followed by - then you'd understand. Of course no one has taken me up on staying with us.
I don't think the suggestions are meant to be hurtful towards us, but rather either they don't know what to say or they think they are being helpful. Its not helpful but hurtful. Try your best to let the comments roll off your back and move on. Easier said than done, I know.
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