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Rules for engaging our loved ones with dementia:
1) Agree, do not argue
2) Divert, do not attempt to reason
3) Distract, do not shame
4) Reassure, do not lecture
5) Reminisce, do not ask “Do you remember…?”
6) Repeat, do not say “I told you”
7) Do what they can do, don’t say “you can’t”
8) Ask, do not demand
9) Encourage, do not condescend
10) Reinforce, never force
The overall goal should be to:
Keep them as calm and peaceful as possible (because they are less and less able to bring themselves to this state on their own).
You can create tasks for her: I have my 99-yr old aunt folding a large pile of kitchen towels and also sorting plastic utensils and colored poker chips. This gives people with dementia a sense of purpose, it uses up time and it burns both mental and physical energy so they may sleep better at night. You can come up with other tasks, like chopping vegetables, etc.
In general response to your post: the caregiving arrangement needs to work for both the receiver and the giver. If it is onerous to the caregiver, then the arrangement is NOT working. Alternative types of care must be considered to avoid caregiver burnout.
Teepa Snow is an expert in dementia and has lots of great education for caregivers on her YouTube channel.
Who is your Grandmother's PoA? Does she have one? If not, ideally she should create one so that she can continue to receive care by her family. She needs to be encouraged to do this before her dementia advances to the point where she legally cannot create one. If there's no PoA and her health/living conditions worsen to the point of crisis and she resists help, then eventually the county will need to acquire guardianship and then they make all the decisions, not the family.
I'm hoping that your family is paying you a realistic wage for your services? If not, they should be. And there should be a written employment contract. You're not just "watching out for Gramma", you are a full-on caregiver which has a lot of responsibility. Burn out is a real thing. Do you have days off? Blocks of time off for vacation? Sick days? Work no more than 40 hours? Who will care for Gramma if you need a sick day? If you don't come at this as an employee, your family will (consciously or unconsciously) take advantage of your free "help" yet it will come at a cost to YOU. You are too young to be roped into being the "solution" for Gramma's care. Please read some of the other posts on the Burnout topic on this forum. I wish you much wisdom and courage as you work out this arrangement with your family.
i just want to add, regarding the 10 rules of dealing with someone with dementia.
there are some elderly people (dementia or not) who are simply very, very sadistic/abusive/negative, want to torture their sweet caregiver (in particular a female relative). they love torturing female relatives (daughter, granddaughter, daughter-in-law, etc.).
no matter what you do (agree, divert, distract, disappear, come back later)...some elderly people will insult you/torture you/abuse you/scream/threaten/lie/cause trouble, etc...
depending on just how negative the LO is, this WILL destroy you.
don't think you can somehow feel less pain, or create an armor around you. this WILL destroy you.
it's not just about the screaming/negativity/insults/etc., which will take weeks every time to shake off.
it's the millions of positive missed life opportunities, while you're busy reading up on how to heal, how to overcome negativity.
time and energy spent on that.
rather than on building your life.
look at the happy, successful people around you -- they're lucky in the sense that they're not spending much time with someone who's torturing them.
in little doses, one can sort of survive.
but even little doses of abuse/constant negativity ARE damaging.
----
protect your life.
if you see yourself frowning every day, you must make a change.
some unhappy people intentionally and consciously want their family members to be miserable.
you can tell whether it's intentional, because they don't behave the same way, with some non-family (for example doctors).
someone who really doesn't know what they're doing, behaves the same way towards everyone.
----
if you're miserable, frowning, feeling down, they're happy.
there's someone next to them miserable, hopefully more miserable than them, that's what some elderly people think.
if you're bubbly and smiling, watch out.
they'll try to destroy it.
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of course not everyone.
i'm saying, some elderly people do this.
----
i'm also saying, it WILL affect you, destroy you, in some way or other.
it's not possible to be totally happy and full of life, and feeling great, with someone bringing you down constantly.
it's not by chance, that some evil people for generations have studied how to psychologically torture + destroy someone. it's because it works.
----
hug!!!
in the same way, however, positive and encouraging people also affect you, and make you feel good!
stay close to kind people.
avoid mean people, if possible. if not possible, find a way to protect yourself.
make yourself unavailable.
personally, i don't mean totally cutting off.
but less available.
----
so, OP, how do you deal with her boredom?
i would say this:
LET YOUR SUCCESS AND HAPPINESS, BE HER JOY AND EXCITEMENT.
be successful and happy.
work on this.
and achieving that, should make her extremely excited and happy.
and if it doesn't...
well, if she loves you, it would.
---
pre-new-year hugs!! :)
Grandmother can refuse a homecare situation, it's her right, but it's not her right to make you her homecare provider or anyone else. You should leave this situation asap. The longer you stay, the harder it will be to leave.
At the moment, if she says "if you don't want to be here, leave!", take her at her word. Just say ‘OK I’m going out for 2 hours’, or ‘OK I’ll be reading in my room, call me if you want me’. Leaving doesn’t have to be forever.
Don’t expect too much appreciation from her. Many older people get to take out all their troubles on the person who is closest and doing most. You need to develop a tough skin to cope. Love, Margaret
I watch this video twice a day
10 Tactics to Put a Narcissist in Their Place https://www.youtube.com/watch?v=h7a0HjVlD7g and put into practice what they are teaching.
Boy has my stress level ever gone down
I want to win the lottery too, but that ain't happenin' either.
My advice is to move out and on with your life. Grandma needs to move into managed care where she can be 'bored' and complain to the other residents who will all agree with her that there's 'nothing to do' in this place and 'the food is horrrrrrrrible' too.
Newhere, if you’re this challenged after 4 months, then this is NOT the role for you. Reconvene with the family about the timing of your exit and move on.
Newhere - I have found some relief in taking days off and shifting some responsibilities to others - e.g., I found a housecleaner for him, which he resisted but I didn't give him a choice. I'm also working on transportation to his doctor appointments - also not giving him a choice. As a primary caregiver you may have less ability to step away but I hope you can try. I've also started to be very consistent with questions like "I know you miss doing X, but what do you want to do now?" or "I know you find Y boring, so what can you do today to distract yourself?" I'm trying to show him that he is in control of his own life satisfaction and I also don't engage when he complains about being bored. The other comments here that your physical and mental health are just as or more important than your Grandma's health are 100% true - it's hard not to be dragged down by the negativity, so hopefully you can ignore those comments and/or leave for hours at a time. Sending you huge hugs!
Kudos to you for being able to survive on your own since age 15 and for enduring what seems like very difficult family circumstances with both your compassion and integrity intact. That said, I am concerned you may be letting yourself be taken advantage of as a result of all that you’ve been through.
You had clear intentions when you made the decision. Now that you know more, you realize you need to make a different decision.
Are there family. members who did care for her and stepped back that would be willing to work with you in coming up with a plan of hired assistance and support you and her in getting services in place? Living with her may work out, with more structure and boundaries.
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