Respecting diverse approaches to caregiving?
I have been reading articles on AgingCare by Anne-Marie Botek and Carol Bradley Bursack. I must say they have shared a enormous wealth of information. I stumbled upon Respecting Diverse Approaches to Caregiving is Important ...There is no one-size-fits-all approach to caregiving. and Things You Should Never Say To a Caregiver.
We have relatives from away who come for a day or two and start disrespecting my approaches to caregiving and interfering with actions in process. The things they say range from > let her do what she wants, to >don't say that…..to> their correcting her misstatements, to > when there are routine aches and pains demanding I call her doctor... to etc etc etc. Then I get the; “you are a terribler cagergiver. What do you do when they step into the middle of things.
These are adult people who don't know what is what are disruptive and they are infuriating. How do I get the message across; Please think before you say something...
I agree there are Things {they} Should Never Say To a Caregiver or the person being cared fore.
The they had to pass an exam and have two exemplary reviews of their work in their portfolio. Like I said good care homes can and do train their staff properly; bad ones in my honest opinion should be shut down. I have to say where i have seen abuse men hurting women has been far more disconcerting than women hurting women purely because of their size and strength (and so so sad to say it but even gender ...if you get my drift...for sometimes the abuse is sexual, sick as that may sound)
I truly think the inspectors of care homes should start wielding the rod and making these care homes step up to the plate. For example you either meet the standards or we shut you down - you have one week to draw up the plans and three months to enact them ALL or we shut you down and confiscate all your assets
its called " welfare to work " . a buddy of mine's wife was trained to be a dental tech a couple of years ago . the extent of her training was flashcards to view in her kitchen to learn the dental lingo . she can to this day manage a dental x ray without screwing it up ( much ) . im all for that but that doesnt make her a professional " anything " .
hospice and home care are even worse . their qualifications are more centered around whether they have a current pulse or not .
And may I say -- wonderful advice from all. And ohJude -- you are so funny!
I didn't have much of what you and GA and ohJude describe. Not many interfering back-seat drivers. I was unexpectedly hospitalized shortly after my husband's diagnosis with dementia. Our 5 adult children and a couple of their spouses took over complete care, in shifts, for nearly a week. After that experience not one of them ever told me I was doing something wrong for their dad! I expect that your out-of-towners would change their tunes quickly if they had complete responsibility to care for your loved one on their own for a week or two. But that would be very unfair to your wife. Don't cut off your nose to spite your face!
I kept up a blog on Caring Bridge and frequently posted about our experiences, about things I learned about dementia care, about what the doctor said on the last exam, etc. etc. This allowed me to present information to everyone at once. And even if the message was aimed at one or two people it was not a direct confrontation.
Are you on CarignBridge, Dave, or a similar communication venue? I could see you using this to explain that things have now reached to point where visiting has to be restricted to no more than 2 hours at a time, and that you can no longer accommodate house guests. Visitors are still welcome and encouraged, and in small doses are cheering for your loved one. blah blah blah -- you are articulate, you could pull this off!
In one CaringBridge post you could summarize a good article and provide a link to the full text. In another you could tell about a book you recently read and which parts seemed to apply particularly to your situation.
Many of my friends responded to my posts by exclaiming over how devoted I was and how much I was doing. Well, I wasn't doing the posts to apply for martyrdom, but I think it helped for people to glimpse behind the scenes at really goes on in caregiving. Maybe that helped keep the criticism down. Or maybe most of my friends and relatives are just polite people!
Keep in mind that you have your hands full. It is not your duty or responsibility to educate these (we hope) well-meaning but misguided people. If you have the time and inclination to increase their awareness a bit, fine, go for it. If not, it is also OK to go into protective mode. Minimize their opportunities to disrupt your routines. Practice saying, "Well, that is an interesting concept. I'll have to give that some thought." and "Thanks for your suggestion, but we've worked out ways that seem to work well for us, and I hate to rock the boat now that things are going so well."
You are still in charge. YOU know, and your friends here on AgingCare know, that you are doing your best and that is pretty darn good, all things considered. You are NOT, not, not a bad caregiver. Let that roll right off your back.
I went out did the bits and pieces I needed to and came back for her at 2.25 for a 2.30 pickup. So back into the you got her here late and now you're wanting to pick her up early....deep breath.
Oh we are having our Easter fayre Saturday and Mum wants to come don't you. We told her you wouldn't mind bringing her. I can feel the sinews in my neck constricting in pure rage. Actually you should have let me know earlier we have something planned is what I said - hopefully Mum will have forgotten by then.
No not a bit of it what are we doing Saturday where are we going Saturday - you never said we were doing anything Saturday - you get the picture.
And then the piece de resistance.....we could always go to the Easter Fayre - you can come too and have lunch and afternoon tea
I have only two words for that - Like hell!
I think what gets me the most is the automatic assumption that at a certain age or stage, AL or IL is automatically the best option, as in "Why don't you put him in a facility?"
I always respond with "how do you think we're going to pay for it?" Or "why would I do that when in-home care is cheaper?" Most of them don't know enough about Medicaid and assets to respond, but if they do, I usually try to complicate the issue and confuse them so they give up easily.
Another irritant is the assumption that an intelligent man with no signs of dementia, with accomplished woodworking skills, well read and always reading....that this kind of person is going to find moving little plastic chips around on Bingo cards exciting, or even tolerable. No way.
If someone is really pushing the issue and suggests that eventually I "might have to go to a home myself", that's when I tell them what's why I keep my guns. That usually shuts them up.
In fairness, though, some have no idea and never will, which is why they shouldn't be passing judgment.
All I want to say is hang on there...you come over here you expect me to chase after you, and walk your bloody dog (when quite frankly you could do with the exercise), who incidentally has terrible breath and should be taken to a vet to have that addressed and you have the gall to tell me I am not caring enough, suggest in front of xxxx that I do this and that when you have absolutely no idea of the impact that will have after you have gone nor do you have a clue as to how much work is involved in going out shopping vis a vis, picking the right time, preparing xxx, getting everything into the car, finding a disability parking space that isn't miles form where you need to be, making sure you have a full bag of diapers, clothes to change into if there is an accident etc and just where do you expect me to put any shopping I do buy?
And as for being left alone , if you are stupid enough to believe I don't check, I don't bring her drinks, I don't sit with her, I don't eat with her, I don't do the toiletting, I don't do the laundry, wash the floors, hoover the carpets clean the windows, empty the commode, do the washing up, open and handle the mail, handle the finances, keep records of everything I do then you quite frankly have no business passing comment and as for my pay less than 100$ for 168 hours a week is less than slave wages. Go shove it!
Better still let me come and visit you and tell YOU what you're doing is not good enough, oh and get me a cuppa tea there's a dear, and a biscuit, and if you want a break you can always take my little pooch for a walk, why can't you go to the shops....Im sure xxxx would love to go out for the day shopping with you wouldn't you xxxx. You ought to go and pick up her friends and bring them round for tea....you'd like that wouldn't you xxxx?
Thanks for the tea and the biscuit....you really should take Mum out more and you do need to check on her more than you do...she says she's been on her own all day. I don't think you're doing enough really and after all you do get carer's allowance for actually doing the work don't you hmmmm (said criticisingly with raised eyebrows and peering over spectacles........
Oh god I can hear it now! Let me at those bloody do gooders
Sorry, I think your suggestion has merit. I've found though that the people who make the criticisms have absolutely no idea what's involved. E.g., someone who wants to meet us for lunch half way between their home and ours has no idea of what it's like to plan for 2.5 hour oxygen batteries, recharging them, and especially of the fatigue it causes an older person to sit that long in a car (dementia is not an issue).
Sometimes it's as if they're starting from point A and we've already progressed to point H or beyond.
What I wish is that they'd suggest ways THEY could help, instead of making suggestions. I'm still waiting...waiting...waiting...
Well first things first let them visit but not stay at your house - since they don't appreciate what you DO do then let them stay elsewhere. If they ask why tell them you find their interference in her daily routine disruptive to her well-being
Let her do what she wants - Tell them you have to build a structure to her day so that she has an awareness that something will occur in sequence even if she has little awareness a routine and structure is always best for both career and caregiver. That's not to say you always keep to it but it is in the plan!
Don't say that - Assuming this is you speaking to your wife and assuming that you are not being verbally abusive or derogatory or demeaning in any way then the way you speak to your wife is none of their business. Plus sometimes you have to speak in a way they understand. Do I shout at Mum oh lord yes like today when she tried to walk across the room unaided I screamed STOP...and of course she did - I think I scared her a tad but hell that was better then the val she would have had if I had stood by and let her do what she wanted
They're correcting her misstatements ... Tell them they are misguided in their approach to dementia and that correcting her will only serve to make her agitated and that will impact on her anxiety levels and her well being. Better to agree and change the subject and keep everything balanced than to counter everything she says when she is walking in her own world
When there are routine aches and pains demanding I call her doctor: Tell them you have and this is what he has said....time for a small white lie here if you feel able or say something like - yes the doctor knows about this and he has prescribed this and this but we can only use it when absolutely essential. Show them the ibuprofen gel rub for her knees or back and the painkillers.
You are a terribler caregiver.
Yes but you ARE GIVING CARE. Tell them very nicely that you probably need a break and thank them for recognising that and that you will gladly show them the ropes so that they can care for your wife while you go get a weekend rest somewhere. Add that you think it is wonderful that they take such an interest and you hate correcting their assumptions but it is important that your wife's care be as continuous and smooth as it can be.
Then of course when they leave pour yourself a large glass of something you like (orange juice?!!!!) Take a moment, breathe deeply and enjoy the peace...sometimes while it is nice to see relatives it is a royal pain in the rear.
My son always criticised me until last weekend when Mum completely forgot her nice nice ways with him and had a real hissy fit. He soon jolly well changed his tune
If they want to "step in the middle of things", be strong and tell them that they don't have the background or experience, but that if they really want to help, you'll be glad to have an assistant for a while so they can be trained.
Obviously you have to be a bit gutsy to speak to relatives like this, but they're being gutsy in the first place with their criticism.
I would also advise anyone who comes to visit that any questions (not criticisms) about your caregiving methods are inappropriate since they're not "in your shoes." Ask them how long they intend to spend visiting so they can learn to undertake the caregiving actions and steps you're handling - so they can get a real understanding of what's involved.
I've experienced this occasionally too; people who know absolutely nothing about caregiving think their opinions matter. They don't. If it's someone I respect, I'll explain. If it's just a meddler, I thank them and close the conversation.
I've never felt I have to justify myself to someone who isn't involved in the hands-on caregiving.