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I went to a course today run by a woman who has 30 years experience working with people with dementia and who charges $125 for a one hour consultation.
She says it's better not to go and visit the person if you are feeling anxious/down, to have your 'clown face' on all the time you are with them, to act, to smile all the time, to be reassuring and calm all the time, to leave immediately if you feel you are having an anxiety spike - so where does that leave family members with mental illnesses, where does it leave 24 hour carers - are they supposed to suppress their emotions/take acting classes for years on end?
What a joke! This would be ok for professional carers - people who are paid - but people who love them? Isn't that denying them the sufferer the dignity of being a human being who can be related to? Isn't that like we used to treat 'lunatics'? Just stay calm and try not to upset them..... To me, that's taking away a valuable part of the interaction - sometimes if they know they can still upset you, they know you still love them - sometimes they want to help you if you are having problems - it makes them feel valued and needed still.
What happens if someone in the family has schizophenia/depression - does that mean they are forbidden from caring for/seeing their loved one?
What an artificial and superficial load of bollocks!!!
I mean yes, avoid having major melt downs in front of them.... but showing other emotions apart from smiling benignly - anything more likely to make a person feel dissociated and nutty I can't imagine!!!
Perhaps this woman overdid it a bit. I think her message was that the person with dementia can easily misunderstand a caregiver's intentions if the caregiver's body language does not match what they are saying. For instance, if a caregiver wants to toilet a person with dementia and has a frown on their face, even though they are speaking in a friendly, non threatening way, the person with dementia will go with the body language.
It's the same for family members. However, if you are visiting a LO on a MC unit, you probably won't be doing the work of the caregivers, so there is obviously no need to be so strict about it. BUT if you want to have a good visit, try to keep your mood light and match your facial and body language to what you are saying.
People with dementia don't have a lot of insight. If they think a family member is upset, they, themselves may get upset too.
Here's some information on good communication when you are talking to people with dementia. It will help you get your message across without mixed cues.
Hoping this helps,
I was laughing while reading your post, because that approach would seem very artificial to me too. People have told me, for example, that I should not be sad around my dad who is on hospice, because he is sad enough already that he is dying. Yeah, but I am caring for him and my mom 24/7, so where does that leave human emotion? I'm not in the "you must be jolly all the time" camp. Plus, I would like to know where all the people are (I'm not talking about people who are paid to visit), I'm talking about people visiting out of the goodness of their heart? Moreover, I find clowns seriously creepy.
Kindest regards and with much appreciation for your caregiving efforts,
Nadine aka MyParent'sSunshine
I am pretty much depressed all the time. It is hard to maintain a visage of sweetness and light when feeling this way; moreover, the dichotomy between internal feelings and outward mien causes yet more stress.
To be honest, I don't think that all adverse behaviors can be chalked up to dementia. It is hard to be joyful when being needled, criticized, and put down.
I don't know everything by a long shot, but if tonight after work when I care-give for my Mom I walk in all smiles, jolly, and Stepford-Wife detached . . .
I know for sure, 100%, that my Mom will become suspicious, anxious, and she'll know for sure that something is wrong. If I come in, as usual, and say that it has been a long day at work and I'm a bit tired, but let's get something to eat and watch the news together (which she loves to do) and let's plan what we want to do for our outing tomorrow... Well, it will be a much calmer evening.
On the other hand, honesty can backfire. I was visiting my mom a week ago. She is constantly losing her wallet or id cards and accusing me of taking them. At 11pm the night I was visiting, after finding her wallet for her all day after listening to her accuse me of moving or taking it all day, she once again could not find her wallet and I lost my control and started wailing and crying (I was extremely tired and fed up). Funny thing is that she immediately was able to find it after seeing how upset I was (I don't think she's lying...just the stress of seeing me upset triggered her memory).
Anyway, we talked, we made up, the next morning she didn't really accuse me of taking things and only one or twice during the week. But she was very concerned about my being upset...she kept calling asking why did I get upset, what is wrong with me, did I have a fight with my husband, am I sick. Perhaps I shouldn't visit so often (not possible...I am the only caretaker and she has no friends to help her and she will not allow outside help). I finally told her yes...that's it. I had a fight with my husband but we are all better now.
I'm pretty sure she will continue to accuse me of taking things. She will eventually forget that I got upset. All in all, the damage control was not really worth the display of true emotion.
Karl and I am, I don't know what the woman who Marmotta saw was trying to convey. It sounds very much overboard to me and I think the reaction some of you seem to have to the communication guidelines is also a bit overboard.
It is very true that a confused person has a hard enough time understanding what you want to communicate without getting mixed messages from you. Your body language should match your words. You don't have to have a happy face on all the time. If you are sad, say so. It's also OK to tell someone with dementia that you are mad about whatever. But then move on to a more pleasant topic.
"Tango, it would have been OK to simply say to your mom "I'm really tired and it's time for me to go home" and leave it at that. If your mom still had some mothering instincts she might enjoy a hug, but getting angry and crying and showing her your frustration is probably not a good idea. It often leads to the person with dementia having a catastrophic reaction. This means they don't understand what is going on, get frightened and often feel the need to defend themselves. This can and does happen. This is why we don't say no or argue with people who have dementia and cannot understand the issues causing the problem.
Hope this clears it up a bit
Didn't mean to offend, and there isn't a context for the "clown mask" advise. My guess is that it is meant for non-family care-givers, or for care-givers for which the patient isn't familiar.
My point is that I believe it to be poor advise in my case and I suspect for many other family members. I also think "clown" is not a good analogy. How about "friendly face" instead?
The other day, my dad was having a very rough day. He didn't want to get out of bed. He didn't want to walk anymore. I made sure his oxygen was at the right level. I gave him a breathing treatment. I gave him medicine to help his breathing. I gave him a hug and a kiss. We had to go so I put him in the wheelchair. He is tiny enough I can lift him up and put him in the wheelchair. He looked at me. I looked at him. I said "The Lord's Prayer," with him and I was crying at the end. He said, "What's wrong? I'm not in pain." I was crying. I said, "It's so hard to see you suffering. I wish I could take your suffering away from you." He said, "All is love."
I will never forget that. "All is love." That is a treasure I can keep with me forever.
All is love, friends. All is love.
QUOTE " sometimes if they know they can still upset you, they know you still love them - sometimes they want to help you if you are having problems - it makes them feel valued and needed still. "
Well, a lot depends on the Stage of the disease and how broken the reasoning ability is. That's the whole kicker with the disease - it affects usual brain function, and no 2 PWD are the same. I'm sure there's a mid point between her advice and the above. Being candid about upset may be OK in the earlier stages of the disease, but by mid stage it can bewilder and upset our loved ones.
I would probably think that the takeaway message from the bad speaker is that when possible, be a positive, calm, non-anxious presence to enhance the well being of your LO, because they may not be able to understand and process your status the way they could before the disease. And, for the many times when you are feeling anxious and depressed, do your best to not share that with the PWD if they are further along in the disease because they cannot process it or help you the way they did pre-disease. Super long visits were not productive for my LO, which helped. If I was having a day I did not think I could hold it together, I did not visit. Dad was far beyond being able to care or reassure or understand anything. On those days, he was better of without me.
Nadine, your dad’s
words were deep. I had the same
experience with my dad when he was on hospice ten years ago. It’s those little things/words that can
help. My mom was a poor caregiver and I
was lucky that my dad finally had hospice in the home. I saw him the weekend before he passed and it
was a great experience. He had a burst
of energy and other then the way he looked, it hard to tell he was ill.
As for the clown face deal, well I try to be careful about
what I do or say with my mom. She does
sense stuff and my personality is such that going in there all happy, happy
would set off some red flags. I also
think when I lose control and raise my voice (it does happen) she sometimes
gets an idea that all is not well.
Sometimes I even think she enjoys watching me be upset. It’s strange, but she has control of so few
things that if she can tick me off, she’s made something happen.
Maybe the clown face deal is for others and not immediate
family or maybe it’s for someone at the last stages. I can’t say, cause I’m not there. I just know I wouldn’t fake emotion.