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We all have in the trenches experience that can help others caring for loved ones with dementia - lets share them

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#1 - if a person with dementia was always mean & complaining then they will be even more so until dementia is so advanced that they don't do anything - don't expect a mean person to become a nice, friendly person just because they are ill ....rather the opposite
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#2 - a person with dementia is basically a 3 year old with baggage - how would you deal with a small child - bring them a small treat like a coffee & doughnut, a small plant, a picture of a family member
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#3 - A caregiving agreement is helpful to all parties. Consider putting one in place.
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Their thinking is different now, and you must find other ways to get cooperation.
A dementia patient is not the person you once knew and you cannot reason with them, or lecture or teach them, no matter how hard you try. All you will do is upset yourself, and them and they won't remember it, but you will.
Think of a difficult dementia patient as someone with 2-3 year old emotions and behavior (that unfortunately, unlike a child will not get better) That person still has the verbal ability of an adult.
Experiment, and just like with a child, give them lots of love, patience and you will discover how to get them to respond the best without stressing both of you.
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#5. Drink water
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#5 - Playing music from their younger years is a great way to engage and entertain someone with dementia. I've heard fidget mats are good, too.
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#7 when you make a doctor appointment for a loved one... tell your loved one the appointment is a half hour earlier than appointed. You will find you will need that extra half hour to help find their coat, their hat, their wallet, their cane, their glasses, and trying to get them into the car.
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#6. They may fall, never grab onto their hands or forearms-it may make it worse. Even telling the really independent to fall into you and you both will slowly lower to the ground will be a problem. Yesterday, as our elder started to fall, my hubs was standing so close, without touching him, he was behind him and uprighted him by his underarms, whew! Then I saw a two-year-old-like maneuver, flinging his arms as if-don't touch me! No fall though!
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9. Hand them the bottled water with a smile, while cracking it open.
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10. Post a calendar on the fridge, add who is going to show up and when if you have a volunteer caregiving team.
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#11... if the elder wants to eat ice cream for breakfast... give him/her two scoops. It's ok as long as sugar isn't an issue. Elders lose their sense of taste except for sweets.
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#12... the thermostat wars. There comes a time when our elders feel very cold, it is just part of aging, not much we can do about it even if our elders are dressed for sub-freezing weather.

If you visit your elders in winter, bring along a pair of shorts and a t-shirt so you can be more comfortable. May not be able to breath so you would need to step out onto the porch to get some air.

If your elders live with you, close the vents in your bedroom and other rooms that only you use. That way you can retreat to those rooms when it feels like the rest of the house is in a rain forest.
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#13? Look after yourself, to combat stress go outside for fresh air and exercise every day, even if it is cold and crappy and you would rather curl up inside with a warm beverage. I wish I had gone out today.
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14. Always treat them with dignity, and protect that by not talking about them as if they are not there, such as "he did this", etc. HE is right there! Even if they are in a hospital bed, in a coma, or asleep.
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#15... try to take over the finances if you have Power of Attorney for the elder.

This will help you keep track what bills are coming to your parent(s)... have the bills mailed to your own address or to a post office box if you live under the same roof as your parent. Also you have control so that Mom and/or Dad dosn't get caught up in money scams.
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When they are pushing your buttons Teepa Snow says to breath... big, deep, slow breaths. It also helps to just get away for a few minutes if you can... I'm going out for a walk to see the moon rise. Just as soon as my cookies come out of the oven ;)
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Don't argue with dementia, try to convince someone they have dementia, and get used to having the same conversation/questions over and over and over and over and over.............
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Notebooks,,, notebooks! All important papers, Dr info, med info and POA and end of life information. Importnat financial information and phone numbers! Update as needed...
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19. Be sure to activate the P.O.A. early enough to prevent banks and creditors from calling. You can back off later if they get better. How will you know?
The primary person who has been paying bills has been in the hospital over two weeks and will be going to rehab to recover.
This timing is crucial, and will take a huge burden of confusion off family, and help keep finances confidential, the bills paid up.
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#20... Make sure the elder's Will is current.

My parents Wills were older than dirt, and almost all the names on the Will the people had passed and thus money would go to heirs. Ok, immediate heirs, or a huge redwood family tree of heirs? Many of which my parents never met. Parents were glad to update their Will with the help of an Elder Law attorney.
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#21. Try not to make the mistake of doing everything for them because it is convenient or expedient for you.
Conversely, don't fool yourself and automatically assume they can get their own meals.
Spend time with them. No one can do all this perfectly, but you will learn, get better at it.
Just when you do, they will change it up on you-it will be you surprised.!!
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#22. Yield extravagantly to the family member who is the leader. Wait for that person to learn, don't fight them. Even if they are not exactly right, get behind them, allow days to go by until they get it, support them. Try.
Avoid a family fight-no one is the enemy-even if they are idiots. Be a peacemaker.
Try not to get in the middle though, you will be condemned in a dysfunctional family wherein no good deed goes unpunished. Expect this to happen, back off slightly-this is not the time to fight or correct someone. Apologize often-even if it is for nothing!
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#23. Now, you drink more water!!!!
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Totally release yourself from the idea that you have to please your parents. It's a habit we formed as a very young age...the cheers you got from the time took your first steps to the time you got your first A on a math test to the time you started your first job to the time you had your first child.... you've been programmed to please them, to make them smile, to make them proud of you. It's ingrained and unless you let it go now, you're going to have many tearful nights.

There comes a point that you'll have to make hard decisions and simply will not be able to get their approval, often quite the opposite. There will be times when nothing will please them, nothing will make them happy, and they will look for someone to lash out against. This will often be those who are closest to them, those such as yourself, who love them and are trying to do they best they can.

The sooner you realizing that that you do NOT have to please them to do the right thing the better off you both will be. As caregiver, it's only your job get them the help they need, to do your best to keep them fed, clean, safe and as comfortable as possible. Realize this and you will empower yourself to do what much be done to achieve these goals, regardless no matter how they act toward you. If you get them, that's great, but don't expect pleases and thank you's. Expect resistance, and, sometimes downright uglyness. It's the nature of the beast...
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Oh,above was # 24 - Short Version - Realize there's an expiration date on the desire to always seek your parent's approval.
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Don't trust the doctor or the facility social worker or your neighbour or great auntie mary to tell you what you need to know, go to the library, read online, read through this site and educate yourself.
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#26?... set BOUNDARIES.

The elder needs supplies and groceires. If they are mobile and helpful have them come along with you. If not, you do the shopping on your own. Otherwise when you are in Aisle 26 of the grocery store, the elder is still in Aisle 5. And afterwards wants a tour of a half dozen stores since you are driving.

Set boundaries on other things. Don't sit in doctor's waiting rooms 3 times a week. If the elder is seeing a dozen specialists [which they do], that's a lot of waiting rooms especially when the doctor says come back in 2 or 3 months... stretch it out to 5 or 6 months if it isn't anything urgent.
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#27 Get a whiteboard and dry erase markers. Attach one (only one) marker by string to the whiteboard. Store the others out of reach. Write reminders and notes and appointments on whiteboard, and also on calendar next to whiteboard - 2 reminders. Get a digital clock with the date, day of the week and year on it so they can match clock date to calendar & appointment. (for parents who are in early dementia) Tape notes to the bathroom door as needed.
When I made a date for her, Mom would say "I'll remember" (but she wouldn't) so I always said "write it on the whiteboard and calendar, I'll wait while you do it"
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Oversized clothing.

My Dad had a favorite winter jacket, but it was a tug-of-war trying to get him into that jacket. I found if I bought him clothes one size larger it was a tad bit easier.

And for socks, don't get the ones with tight elastic around the top. My Dad wore his socks to bed, and in the morning his knee was quite swollen. It was the tightness of the socks. The swelling can also be above the elastic line.
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Keep a list of all your loved one's medicines with you all the time so if a paramedic, doctor, nurse etc. needs to know what medicines they are on you don't have to go scrambling around for them.

Also, be in the moment with them. Try to adjust to their world because they have lost the ability to adjust to yours. It may seem unfair to you but it's their new reality so to be supportive, make it yours.
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