My elderly relative has not been diagnosed with dementia but clearly has it. Sundowning is very prominent. We have good days & bad days, as far as cognitive function. There is a subtle downward trajectory for sure, but we still have many lucid times & meaningful conversations. My question is how do you differentiate between a person's actual challenges, and learned helplessness? Examples:
* rarely initiates eating and does zero food prep (will not make a sandwich, or toast, doesn't serve a portion from a larger dish of something, rarely will heat up a plate left in the fridge) but eats when it is served.
* doesn't put clean laundry away...just takes from the pile which inevitably ends up strewn around/tipped over.
* doesn't carry dishes to the kitchen or put things in the dishwasher
* doesn't cover food appropriately
* misplaces mail or doesn't open at all
* stops and starts tasks without finishing them, often
I'm curious if it sounds like this person has become overly dependent on their caregiver, or if they are suffering from age-related decline and just need additional support.
.I hear your unspoken question "are they making my life/work caretaking harder on purpose..&/or don't appreciate what I do"
The answer is no & no. Its not personal...Their behavior would be the same no matter who was there
Having a disease label don't change anything for the better
Then they are given medications . The side effects for meds given for dementia are an increase in the intensity of the symptoms they are supposed to alleviate.
People are who they are...as they get older their negative patterns take a more dominant role
You might consider treating this person the way you like to be treated
"Be the change you want to see"
Mahatma Ghandi
Mom rarely has her oxygen on when I visit. She has COPD and congestive heart failure. She needs the oxygen to stay alive. When I remind her to put her oxygen on, she acts like she has no idea what it is for, or even how to put it on. "What do I do with it?" she asks. It needs to go in your nose mom. She does have dementia and it makes it even more challenging.
Conversations with my mom are difficult as she doesn't hear, or even try to. I write almost everything down, but by the time I answer a question, she forgets what I was responding to.
Even though I feel a lot of what mom does is "acting," she truly has dementia and really can't cope with reality. I am guessing it only gets worse.
As opposed to learned helplessness like my mother, meals on wheels and throws most of it away then complains she doesn't eat. Calls and cries that she is lonely yet refuses to go to asst. living. When I go she orders me around to show her the clothes she has and put them in her drawers . Has groceries ordered in and then leaves them spoil. Was an only child. Ordered my dad around till he died at 60.
Learned helplessness is manipulative.
When I’m home, Mum won’t initiate eating and or put dishes away. She will actually call out and say “I got some rubbish here” or “Here, I’ve finished with my plate and try and shove it to me”.
However if I’m not home, suddenly she has managed to grab herself some snacks from the fridge, cupboard and put away plates/rubbish.
I would say perhaps the task is more challenging and therefore it’s easier to ask the care giver to do it. However I try and reject at times and say “c’mon Mum, you know where the bin is and point to it. I’m not being rude but just re-enforcing the routine so that it wouldn’t be forgotten. I have observed her through security cameras if not home and I can see sometimes there’s more walking around, ie she takes the long way to the bin.
Mum is the same with laundry and she says she doesn’t care. I’ve just started putting it all in her cupboard because yes otherwise eventually it all ends up on the floor somewhere and then it makes my life harder sorting out what needs washing.
Mum is the same, dementia came knocking after losing her son. She probably had signs before but the passing of my brother really did a number.
My rule of thumb is if you remove a task from someone more than once, it becomes your task and you are actually 'disabling' the person quicker. Very similar to the lift chairs. Better to let them use muscle and be a little slower getting out of the regular recliner than to have a lift do all the work and create more atrophy of the muscles used in lifting yourself up. In fact, the recliner thing is what opened my own eyes as to how we disable people we're trying to help. My mother made the comment that she did not want a lift chair because she would lose her ability to get up and down. The lightbulb went on for me to in regard to all of the personal tasks.
As for your relatives other things that she forgets or fails to follow through on, that may well be dementia at work. If she can no longer remember to open mail or pay bills, that may be a task you really do need to remove from her.
and subsequent diagnosis with Parkinson’s. I had always considered myself a patient person, but seeing the struggle my husband has with buttons, zippers, putting on a shirt, taking off socks, I have learned the patience and compassion necessary to allow him HIS time to get these all important tasks done. After being married to this man over 60 years, he was always the one waiting on others, always on time …usually way early! Now I have to be sure to prepare for a trip to an appointment WAY ahead of time to be there on time with him. I always have someone asking “do you need
help?” And I say “thank you, but we can manage OK”.
I would rather allow my husband do the movements and turns that will give him confidence from falling, which is probably why some folks hesitate to do some things for themselves. I agree about recliners … just found a near new Lay-Z-Boy recliner with a manual
arm/lift at our local consignment shop. After looking
at the great new ones, that do everything but pour a
cup of coffee, brought this one home since husband
has good upper body strength which he is using for this one … and saved a bundle! So many caregivers
are spouses, so being patient and giving your spouse time to (carefully) help themselves with a thoughtful eye, pays off in the long run … for both of you.
Caregivers, by nature, want to care, help, ease burdens, but can sometimes unknowingly trigger an enabling loop for the Senior to establish expectations based around their Caregivers’ support style.
Now, if the caregiver(s) is receptive to feedback - I would challenge them to take a more inclusive approach to your loved one’s abilities in the day to day.
Some examples of this could be,
-“Let’s do this _______(task) together”.
-“Can you remind me/help me/show me how to to this [task]?”
-“I wonder what’s in the mail today! Let’s find out!”
With engaging the Client and including them in these day to day tasks, you may quickly find your answer of whether it’s a true decline or dementia disease progression vs. the learned helplessness cited.
I also would not rule out depression as a root cause of what you explained.
This is an under-asked question.
Many families will make the assumption of physical/cognitive decline and fail to consider other factors as you did.
I hope you find answers here that best serve your loved one’s needs!
In some dementias a person can seem to be fine in other ways but they've lost their executive function: the ability to put together what is happening now and the consequences of that action/inaction and the ability to make plans and execute them.
Then factor in a little dementia and you see they need help.
The best thing is to let them do what they can and what they want to do even if it takes them longer.
If they can feed themselves, let them even if it takes them an hour to eat.
To the OP - when supporting clients, we record their abilities in broad categories, thus:
I - independent, the client is able to carry out a task without assistance; not necessarily to a high standard, mind, but well enough that it does get done.
P - the client is able to carry out a task once prompted, encouraged, or verbally assisted. For example, we might ask whether a client has taken her medication; we might do a spot of cheerleading to give her confidence to stand up by herself; or we might confirm that a client has read the instructions on a packet correctly.
M - the client needs minimal physical assistance to complete a task. For example, the client can mostly dress himself but needs support to get his underpants over his feet. The key point here is that without the "M" support the task would not actually get done, even if the help required is nothing much. In this case we'll be looking for techniques or gadgets that will enable the person to manage alone.
F - full support. The client can't currently perform a task such as preparing a meal or washing himself in the shower. This category is further divided into AO1 and AO2 - assistance of 1 or 2 people respectively. I always record how far the client is able to engage in the task, though, because this gives us something to build on, and reablement principles can benefit all care receivers no matter what their level of disability - it stops people feeling like passive objects and reminds everyone present that this is an individual person we're dealing with.
If you suspect that your aunt can do more than she currently is doing, the best way to find out is to ask her. You mention meal prep as an example: I have a client who claims that he can't remember how to make toast, but if you make the toast and sit him down at the table with the butter and the marmalade he's perfectly happy to spread it himself and has no difficulty with it. Next time I'll hand him the bread and see if he makes his way unthinkingly to the toaster - I'd almost put money it. However, if we weren't there I doubt he'd even enter the kitchen. So, can he make his own breakfast? Probably. Will he, left to his own devices? Almost certainly not. Should he be encouraged to engage in meal prep? Absolutely!
Every task has component steps, and usually far more of them than we're conscious of in the everyday. Breaking tasks down and spotting where the hitches are can be a very interesting and revealing exercise.
There is some decline as we age. Maybe he just can't keep focused. Boares easily. If you have asked him to reheat something or put his clothes away and he hasn't done it, he probably never will.
Has this person always had problems with some of these things? Starting and stopping a project can be a sign of Attention Deficit Disorder. And many of the other thing you mention might well fall into that category as well.
Some of these could be an indication of depression as well
The only way to be sure is to have an examination done by a neurologist or a neuropsychologist.
She was starving herself to death. She managed a bowl of cereal, and a dish of ice cream per day, and that was it.
Her condo became filthy.
One of the effects of dementia is lack of initiative.
Besides the “want to” that can disappear, the “how to”, can leave as well.
Dementia really destroys the things requiring multiple steps to perform.
For example when you leave a dish for her to eat later, it still requires: Taking food out, heating it up (dangerous!), putting it on the table, getting silverware, cutting it up (dangerous) and then eating...it's a multi-step project that can be overwhelming.