If I Get Dementia

Jules

Jules

SF VIP
You’ve probably seen this on social media. It’s great advice, no matter how many times it’s repeated.

If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.
1a. Every time you enter the room announce yourself. “Hi Liz - it’s …(your name)”
NEVER ask- Do you know who I am??? That causes anxiety.
1. If I get dementia, I want my friends and family to embrace my reality.
2. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
3. If I get dementia, don’t argue with me about what is true for me versus what is true for you.
4. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
5. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
6. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
7. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
8. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
9. If I get dementia, ask me to tell you a story from my past.
10. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
11. If I get dementia, treat me the way that you would want to be treated.
12. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
13. If I get dementia, don’t talk about me as if I’m not in the room.
14. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
15. If I get dementia, and I live in a dementia care community, please visit me often.
16. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
17. If I get dementia, make sure I always have my favorite music playing within earshot.
18. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
19. If I get dementia, don’t exclude me from parties and family gatherings.
20. If I get dementia, know that I still like receiving hugs or handshakes.
21. If I get dementia, remember that I am still the person you know and love.”
ᴄᴏᴘʏ ᴀɴᴅ ᴘᴀsᴛᴇ in Honor of someone you know or knew who has dementia. In Honor of all those I know and love and lost who are fighting Dementia/Alzheimer’s.
 

This is excellent Jules! Thank you so much for posting it. I'm going to send it to my niece and nephew, who are going through it now with my sister and pre-emptively to my son and others who might be my caregivers if I get dementia. When we went to lunch a week ago, I experienced our other niece handle my sister using the guidelines above. So did I. Having gone through it with my mother and co-wife, I'm well aware of the importance of those guidelines.
 

When I visited my dad toward the end, he called me by his best friend's name.

I sat and listened to him ask me if 'Sarge had figured out where they were going next'.
He was back on one of the islands he fought on during WWII.
He told me (his friend Bob) that his wound wasn't that bad and he'd be back with the unit soon.
(He was wounded on Guadalcanal and returned to his unit for the fighting on Peleliu)

He asked how some others in the unit were doing by name and to tell them to 'Stay Tough!'

I asked him if they were treating him well and he replied he was in great hands.
He said he really enjoyed the visits by the 'nice nurse who brought him treats'.
He was talking about his wife of 50+ years, my mom.

At the end of my visits, I would take his hand and tell him I loved him and he would smile.
I think there was some recognition of 'Me', in his eyes.

To see the man who served his country for 35 years, my Dad, my Hero, at this stage of life was a very
hard thing for me.

June 18th is his birthday and I miss him every day.
 
Jules said:
2. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
3. If I get dementia, don’t argue with me about what is true for me versus what is true for you.
Click to expand...
When I mentioned to our financial advisor that sometimes it's better with a dementia patient to do as #2 and #3 say, don't argue with them ("Don't you remember? Mom {or Dad} are dead.") And he disagreed with me, said "It's never good to lie, it's a real slippery slope. You should never lie no matter what." I said, "Well how should one handle that situation with a dementia patient then?" He shrugged and said "I don't know but it's never good to lie." Of course, I noticed that it was his sister, not him who was taking care of his dementia parents.
 
I strongly agree with all of these. My late sister was an occupational therapist and worked with dementia patients. She always said it was heartless to constantly try to orient them to current situations. They don't want to live in "current situations"....they want to live in another time when life was better. Let them do it.

When my grandma had dementia, I would just play along with whatever she was saying. When she'd tell me she had had lunch with Miz Howell next door that day (Miz Howell was her neighbor in another state and had been dead for 20 years), I'd just ask how Miz Howell was doing and we'd have a nice conversation. It did no good to tell her any of that and remind her she was no longer living in her own house and was in a nursing home. Let her live a life in her head that was a far, far better place.
 
Jules said:
You’ve probably seen this on social media. It’s great advice, no matter how many times it’s repeated.

If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.
1a. Every time you enter the room announce yourself. “Hi Liz - it’s …(your name)”
NEVER ask- Do you know who I am??? That causes anxiety.
1. If I get dementia, I want my friends and family to embrace my reality.
2. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
3. If I get dementia, don’t argue with me about what is true for me versus what is true for you.
4. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
5. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
6. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
7. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
8. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
9. If I get dementia, ask me to tell you a story from my past.
10. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
11. If I get dementia, treat me the way that you would want to be treated.
12. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
13. If I get dementia, don’t talk about me as if I’m not in the room.
14. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
15. If I get dementia, and I live in a dementia care community, please visit me often.
16. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
17. If I get dementia, make sure I always have my favorite music playing within earshot.
18. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
19. If I get dementia, don’t exclude me from parties and family gatherings.
20. If I get dementia, know that I still like receiving hugs or handshakes.
21. If I get dementia, remember that I am still the person you know and love.”
ᴄᴏᴘʏ ᴀɴᴅ ᴘᴀsᴛᴇ in Honor of someone you know or knew who has dementia. In Honor of all those I know and love and lost who are fighting Dementia/Alzheimer’s.
Click to expand...
I'm seeing a functional medicine doctor and she says being insulin resistant is a huge problem for our health. She says dementia is now considered type three diabetes. It really comes down to what we put in our mouth. Snacking and eating 6 meals a day are terrible for us. The pancreas can't handle all the sugars and the sugars which most come from bad carbs go into t
the bloodstream. I've been reading a lot about this and it makes tons of sense. If we can get this under control our chances of getting dementia are greatly reduced. Too bad most doctors

don't get training in med school on how important nutrition is. Don't believe me, do some
research and see what you find out. It sounds like you're setting yourself up for a bad outcome. Take control and turn those negative thoughts into positive ones. Stay away from processed foods and poison seed oils. Youtube has a guy who visits stores like costco, aldi's whole foods and a bunch more called flavcity. He reads the labels and even has an app which tells you the healthy from the junk. You just scan the item and it tells you if it's Bobby approved.
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