How do you handle a defiant parent/spouse with dementia?

Since dementia progressively robs people of their ability to use reason, logic and judgment AND their ability to empathize with others, you need to have a completely different engagement strategy. I learned a lot from watching Teepa Snow videos on YouTube.

I also found these guidelines helpful...

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 goals should be to:

1) keep them as calm and peaceful as possible 
     (because they are less and less able to bring themselves to this state on their own)

2) keep them physically protected in their environment and from predatory people

3) keep them nourished with healthy foods that they will accept without fighting or forcing

4) keep them in as good a health condition as is possible, that their financial resources will allow and within their desires as expressed in a Living Will (aka Advance Healthcare Directive) 

5) keep them pain-free as possible and within their desires as expressed in a Living Will (aka Advance Healthcare Directive)

The caregiving arrangement needs to work for the caregiver. If it is onerous to the caregiver, then the arrangement is NOT working. Alternative types of care must be considered to avoid caregiver burnout.

The key is you understand what dementia is and how it affects the brain, with dying cells. That you say you 'suggest' tells me that you do not understand what dementia is. This isn't a criticism. When you learn that 'dementia' requires / is a new language to be learned, i.e., requiring new ways of communication, then more will make sense to you - in terms of how to respond / interact (not that the dementia communication itself will make sense).

What will help you:
Get a book or two about dementia and learn what parts of the brain affect different behaviors and communication.
Dementia is the umbrella word for different kinds of dementia. Learn / ask MD what kind of dementia is present. It may / may not help you although it is important to know which areas are affected and how that manifests.
* Google TEEPA SNOW. She is one of the country's leading experts on dementia. Buy her books, sign up for her webinars (I did for 1-1/2 years), call her office. She has lots of free You Tube videos, too.
* Learn / realize that you must make decisions for a person / parent with dementia. You do not 'can not' ask them what they want. They do not know what is in their best interest. You do what you need to do for their well-being.
* You never ever argue. You could say (reflective listening):
"I hear you saying xxx" and then drop it / switch topics - refocus them, "It is such a beautiful day outside... the flowers are blooming... I see the plant is growing... anything to refocus.

You need to learn to take control of the situation. The tail is wagging the dog here. You can express / be compassionate while (and as) making needed decisions.

Realize they will NEVER been happy or content with your decision making.
They are re-acting out of confusing and fear.
Their brain does not allow them to make healthy/decisions in their best interest. With that said, do focus on:
* non verbal communication, i.e., smile, hold their hand, offer gentle massage if they are receptive to it, make good eye contact.
What I learned with a client inflicted with advanced dementia (= nonsensical verbal communications - for two years) is that she GOT IT / understood when I would say "I love you (her name) ..." She would respond - they FEEL... get good that is coming in. It may be confused at times in their fractured / de- compartmentalized brain ... but they get it when LOVE is expressed.

If - and it will happen - you get overwhelmed, say I need to leave for a moment and reset. This could be for a minute, 5 minutes or the rest of the day. Do NOT 'sit there' when frustrated and overwhelmed. Somehow shift to reset / regroup.

This is not easy to deal with. Especially when it is your parent(s).
My heart goes out to you.
To recap:
google Teepa Snow,
educate yourself on what dementia is and how to communicate with a person inflicted (Teepa's webinars/You Tubes),
give yourself breaks,
be compassionate to your parents and yourself.
Realize this is a continual learning experience. Be patient with yourself. We, caregivers / family members can be triggered (I certainly was with an angry mean client) ... and I knew what I was doing. It was STILL challenging. The good news (for me, thank God) is that when I woke up the next day, it was really a new day ... I didn't hold on to the 'stuff' from the day before. I am thankful that I could do that. Still breaks / respites are very necessary - as much as:
taking care of yourself
meditate
exercise regularly
eat as healthy as you can
find moments of / for fun
hire a caregiver as necessary

You cannot run on empty.

Gena / Touch Matters

When you ask, the answer is usually a no. So don't ask. If u want him to take a shower, just say time for a shower and walk him to the shower. To get him to exercise, just take him for a walk.

A classmate had Parkinson's for 20 or 25yrs. By the time he got to where your husband is, she could not care for him. He got aggressive. She had to place him. He died at 70.

See an elder lawyer to have assets split. Ur husband's split will go to his care in a NH and when gone, Medicaid is applied for. The lawyer can give you more specifics.

No. There really isn't a way to make the caregiving situation with your husband more positive. I was an in-home caregiver for 25 years and am now in the business of it. So, I'm going to tell you straight and plainly. It's only going to get worse. You can can read everything there is and become an expert on his "broken brain" and dementia. You can watch and memorize every Teepa Snow video there is and will quickly find that they are mostly useless when there isn't a staff of people working with the dementia patient.

Everyone is going to tell you to be kinder, more compassionate, to "educate" yourself, and to see things through his eyes. All of this is bulls**t. It really is.

What you can do is make your life more positive and better. Don't be the one who tries to do everything. Limit hoe much time you spend caregiving or even with your husband doing nothing. If you're keeping him at home for the time being, look into homecare to come and help. Even if it's just basic companionship services coming in to watch him a few hours at a time. This will give you time for outside interests and an opportunity to get out of it for a while. I cannot even stress to you how important it is for anyone living with and taking care of a person with dementia to have a life outside of caregiving. When the caregiver doesn't they create the perfect conditions for abuse.

You should also look at a few memory care facilities. Don't wait until the situation at home gets so bad that you don't know what to do with him. Check some out now. Even if you place him now before the dementia advances more, that's okay. I worked for many people who had to place their spouse in care. They would go there every day and stay with them. They went home later though. Please consider this.

Good luck to you and remember, your health and well being are just as important as your husband's.

Your profile says that you're caring for your husband who has MANY health issues including dementia, so can I ask why don't you just let him be to do what he wants to do(even if it means sitting in his chair watching TV all day)and you go do whatever you want to do?
I think that you might just find that more pleasant for all involved, don't you?
Plus I hope you realize that your husband more than likely can no longer read, so of course he's going to say no when you ask him if he wants to do that.
It sounds to me that the best thing you can do for yourself right now is to educate yourself more about the horrible disease of dementia, so that you'll be better prepared for what lies ahead, and not be so overwhelmed.
And if your husband has Parkinson's like you say in your profile, he more than likely has Lewy Body dementia, which is the second most aggressive of all the dementias with a life expectancy of only 5-7 years, so this too shall pass.
Someone with a broken brain can no longer live in your logical world, so you must now enter his illogical world, as with dementia "logic doesn't live here anymore." Plus it will make your life so much easier if you just meet him where he is at.
Keep in mind this is only going to get worse, so you best get your ducks in a row now, so you can continue on this journey with your husband without your own health being affected.
Also the best way you can keep things more positive is by being more positive yourself. People with dementia mirror the attitudes of those around them, so if you're being negative, your husband will be negative. But if you stay positive(even if you have to fake it sometimes)you will find that your husband will remain more positive as well.
I know this to be true from first hand experience with my late husband.
So get educated, get your ducks in a row and stay positive. And if for some reason you can't or don't want to do any of the above, then it may be time to be looking into having him placed in the appropriate facility, where you can get back to just being his wife and advocate and not his caregiver that's ok too.
Not everyone is cut out to be a hands on caregiver.

Try changing how you word things.
Rather than suggesting "exercise" how about...
"honey, lets go walk around the Mall (or Costco, Sam's any "big Warehouse store" large carts wide aisles and smooth floors) or the park if the weather is good."
As to the reading...
That might be difficult. As dementia progresses it is more difficult to comprehend written words. And even if he can read them does he know what that group of words strung together in a sentence actually means?
Begin to look for things like Coloring books, paint sets and either plain paper or coloring books. If that does not work try blocks, puzzles, (get the large format ones) And if your spouse is one to put things in his mouth start looking for children's teething toys. And keep an eye on him with small items.

Is there an Adult Day Program near you. If so get him involved with that it will give you both a break and it will give him something to do.

And because it is me responding one last thing.
Is your husband a Veteran? If so he may qualify for services from the VA. It might be just a little help or it might be a LOT! Contact your local Veterans Assistance Commission or your State's Department of Veteran's Affairs.
(For you... if you are in Winnebago County VAC is at
555 North Court Suite 300
Rockford.
1-815-516-2850)

I agree with other posters that their resistance to do something might be to cover up the fact that they can no longer do whatever the task is...or may not even understand what you're asking them to do. It's easier for them to just say no.

I will say that the wording of how you try to get them to do something can be key. For example, "do you want to go for a walk?" or "it is time for our walk". "Do you want to take a shower?" or "it's time for your shower." Their personality, their stage of dementia, the type of dementia they have, all play a role in how this tactic might work or not.

It may not be so in your husband's case of course but sometimes a person with mild to moderate dementia may be "covering up" what they can't do, so say no to avoid the situation. This happened to me - I came to realise that I hadn't actually noticed that some of the things I suggested to my mother she just wasn't able to do any more without stress or distress. I wish I'd had Grandma 1954 then to put me right! But a friend suggested I start to say things like: I'd like to go for a walk to look at the river, but no further as I'm a bit tired, and I'd like your company. And will you help me do this or that etc rather than be telling her what needs to be done. I also learnt that some of the things I thought she needed to do weren't, actually, that important after all - or certainly not worth the stress they were causing both of us!

Does he live with you? Your profile says you are new at caregiving and uncertain how to approach him.

I would say ease into this with as little "approaching" as you are able.
You have not become his parent, tho at times it will seem that is EXACTLY the case.
You have seen what happens when even a parent micromanages a kid. They can become quite recalcitrant. And I think that may be where your Dad is.
Encourage his independence by not being "in his face" a lot.
Suggest walks in a way that makes them seem like something you would love his company on, not something that YOU are doing FOR him or MAKING him do.
Watch Teepa Snow videos. Watch them all.

Give us specifics and we will try hard to help. Meanwhile, wishing you luck.
As a little PS I would suggest giving him choices.
For instance: "Should we eats by the TV and watch a video, or would you like to come to the table?"
"Can you tell me where you would plant the onion starts in the yard?"
"Should I do some laundry now or would you enjoy our taking a little walk?"
"I was thinking of making a pot of spaghetti or chili. Which would you like?"
And so on. If questions annoy him, don't do it.
This is all live and learn. You aren't expected to be an expert or even to always get it right.
Give him as much choice over his own life activities as you are able and don't enable him by constantly "doing" for him.

Sherry6510: Perhaps you can garner knowledge on the disease of dementia by reading the book, 'The 36 Hour Day.'