Dementia.....

Bender

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Anyone have experience with a friend who has dementia? Found out an old friend is in the area, he is in the 3rd stage of FTD.

Kinda looking for what to expect. Don't know what he will/won't remember. And how he may react if he doesn't remember. Will he be frustrated if he can't?
 

ButchA

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Jun 27, 2018
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Richmond, VA
My mom had dementia in the last few years of her life. It was so terrible and sad trying to have a conversation with her over the phone. My oldest sister (a retired head nurse from a major hospital) explained to the rest of us what to do:

My mom would drift in and out of 2018, 1980, 1963, etc... You just "go with it" and let her talk. Eventually the conversation switches from her 1963 Ford Falcon getting a flat tire, back to modern times and today's news and weather. She would confuse my voice with my Uncle Doug (her younger brother) a lot too.

The most heartbreaking moment for me personally, deep down in my soul, was back a number of years ago (when we first started suspecting she was getting dementia).... It was Christmas Day and I wanted to call my mom and say "Merry Christmas" to her. However, it didn't turn out that way...
{phone rings}
Mom: Hello?
Me: Hi mom, Merry Christmas! How are you?
Mom: Who is this?
Me: It's me... This is Butch!
{silence}
Mom: I, uh, have no idea how you got my number, I am not interested" (thinking I was a solicitor)
Me: No, mom... No... This is Butch! Your son!!!
Mom: No thank you...
{hangs up on me, on Christmas Day}
:(
 

Mike Galway

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Seems like every case is different . My stepfather had it for many years . In the beginning we just thought he was a bitter old alcoholic . A lot of things came in to play . I noticed he was worse the longer he got off his oxygen machine or go without a drink . He had mesothelioma and emphysema . We also found out he was going deaf , this leads to misunderstandings and frustration on his part . As the dementia progressed he started failing to recognize people and places . We had to disable his truck because he would leave and get lost . My mother would try to correct anything he said wrong , this lead to bitter arguments . I could talk with him , and it wasn't that hard . For some reason he always recognized me . I would start conversation with something generic , when he answered I would figure out what time frame he was in and go from there . Also look them in the face when talking to them .Trying to correct him would only frustrate and anger him . It really wasn't that hard , plus I would always split a six pack of Michelob with him , even in the nursing home . He eventually got to where my mother couldn't handle him , hence the nursing home dementia wing . This disease only progresses , it doesn't reverse . If your friend is a nice guy chances are it will be easier , but sadder on the people that care . Patience and understanding is what you will need . Don't try to correct , try to understand where they're at and go from there . JMHO . Best of luck , Mike .
 

Bender

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Thanks butch and Mike
Exactly what I needed to know. I haven't seen Rocky since the mid nineties. His wife Carol asked him about me and he said he remembers me,
 

John Butler

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It's a shock. Maybe you'll be lucky and he's having a good day. My dad had it. Best advice on here is just go with whatever they say. They believe it. Trying to correct someone with dementia leads to them getting upset.
 

Jennifers

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Oct 17, 2018
Messages
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Pretty much what I was going to say. Do not get mad, argue, or yell, they literally have no idea what is going on or why. Do not argue or correct them. Monsoon outside? "It's sunny out? Why it sure is sunny, isn't it!"

They will ask you the same thing over, and over, and over, just tell them again, or better yet, whatever they want to hear, it makes life easier for everyone, especially them.

When they have good spells, ask THEM what THEY want done, where THEY want to go to stay. Ask what THEY want with them. That ratty doll they had for years might be their best friend and the security blanket they need to cope with not being able to cope anymore.

DO NOT take what they say personally. "I hate you! I never liked you! Get out!" Two minutes later they won't know who you are, or that anything happened.

Tell them you love them, even if you would happily rip their heart out, you hurt so bad, and are so angry with them. They are as bewildered as you are, only they are trapped with a brain that is misfiring, nothing is working right, and nothing they took for granted their entire life is right anymore. They are scared, terrified, confused and trapped in a body that used to be their's, but it has turned on them and they can't leave or get away. They are stuck in a dark and lonely spot, all alone, with no light or help, 24/7. Remember being a small child, hiding under the covers and listening to all the creaks and bangs, and the wind moaning through the trees? That is their life, 24/7, and no one will come to tuck them in, tell them it is alright, there is nothing to be afraid of, because it is all in their head, they can't get out, and it knows their every fear.

They will need professional help 24/7, so find a good nursing home with long term help, that is clean, and they can afford, even if that means their whole Soc Sec check every month, or whatever. Do that NOW. Get any cash/real property out of their name, do that NOW! The state will take everything they worked their whole life for, piss it away, and put them in a home you wouldn't put a rabid rat in. Get the entire family in on this and agreed to, in writing NOW. Get a durable power of attorney NOW! Do NOT wait! Do it NOW! Tomorrow might, literally. be too late to do any good.

You do not want to know how I know this.
 
Last edited:

Busa Dave

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Nov 7, 2018
Messages
93
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DFW
This is perhaps the worst way to go period. I have been the primary caregiver to my father and it was just painful especially for the last 5 years of his life. Mother-in-Law, Father-in-law and Grandfather plus some of my friends parents who I was close to. Went to one's funeral yes outdoor with everyone wearing masks two weeks ago today.

Not a pleasant thig to deal with by any means!
 

joepistol

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Rochester Hills, Mi
Anyone that's gone thru this will probably agree with Busa Dave, " This is perhaps the worst way to go period"
Being a mental health professional, I knew when I visited my parents one Spring, that he was already into Alzheimer s.. aka dementia.
A few months later we (wife, son & I ) moved back to Mi. to help get care for Dad. He didn't want it, or think he needed it.
I knew how the mental health system works, got an involuntary commitment to a hostipal, to get him evaluated, though I knew what was going on..having dealth with it for years @ work. One of the first signs was this: Dad went off for a drive in his new car, then call me, saying the car won't start.
What had happened is, he forgot how to find his way home. When the car started, he told me..you go ahead, I'll follow you home.
Early stages & sometimes even later in the illness.. victims have good days and bad..then the good days aren't so great.
They can turn on those that were closest to them. After getting him placed in a locked facility ( he'd wandered away from home, and an unlocked placement,
then didn't know where he was.) he would recognize me, when i visited..but didn't recognize his wife, of 40+ yrs. Hurt my Mom to see him openly flirting with the female staff, in front of her. Don't think he'd ever cheated on his wife..
Don't be surprised by anything your friend says..otherwise others, above, have given good advice.
Good luck making contact with him.
Can't hurt to try.



Seems like every case is different .
 

PhilaPop

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Jul 31, 2018
Messages
79
Anyone have experience with a friend who has dementia? Found out an old friend is in the area, he is in the 3rd stage of FTD.

Kinda looking for what to expect. Don't know what he will/won't remember. And how he may react if he doesn't remember. Will he be frustrated if he can't?
Bender- I am very sorry to hear about your friend. I have been a patient care volunteer for Hospice for 15 years, and a patient care volunteer for ALS for 8+ years. Sad to say, it is a terminal disease, typically 6-8 years after it is initially diagnosed. Dementia is different than FTD (frontotemporal dementia). Many FTD patients often wind up w/ ALS in addition to FTD, or ALS patients also take on FTD. I have four of the folks I care for wind up diagnosed w/ FTD. It is a progressive disease, so he will only get worse, not better. Four of my folks have had FTD, and only one is still alive. I have had 105 folks die in Hospice, and I am telling you this will be very tough.

Very often they will not want to see their old friends, because while it is not too advanced, they realize what's going on and are embarrassed. One of my ALS folks who also suffers from FTD is a doctor and even taught in medical school so he was/is a brilliant man, and he hasn't seen any of his old friends in 5 years. His wife demanded he see me, and I have been with him for almost 4 years. They often are not very communicative. At first we would play backgammon, but soon he couldn't remember how to play or which way to move. Then we switched to gin, but soon he couldn't play or even hold the cards. Now we sit and watch movies, he likes action films so we went thru the Rocky series, Bruce Willis, etc. We would sit and watch the movie and eat caramel popcorn.

If he will allow you to visit, then start visiting him every week or so, because he will only become more withdrawn. Symptoms include loss of empathy, they stop caring about anyone else, poor judgment, socially inappropriate behavior, lack of inhibition, inability to concentrate, abrupt mood changes, sometimes speech difficulties, etc. One of my folks liked raisinettes (chocolate covered raisins) and I would bring her a box every visit. I would get her to talk about her childhood, growing up w/ her sisters, and Xmas and she was good talking about this for 30 or 45 minutes. Next week we would have the exact same conversation, so find something he likes to talk about, often many years ago during the "good old days". Sit and keep him company watching TV or movies, find out what kind of movies he likes.

I hate to say it, but towards the end they may become comatose, and won't talk at all, so just sit and keep him company. There is a wide range of behavior, there are no "typical" cases in my experience. Most probably they will need to be in a nursing home, or require 24/7 nursing care at home. One of my guys was in the navy, and then a fireman, and towards the end he was totally comatose. His 90 year old mother would come and see him every week, but hadn't seen him talk in 10 years. I would take him down to the "living room" in the nursing home and watch the other people. One day I wheeled him to the piano, and I sat down to play (which I cannot do). After fooling w/ the seat for 5 minutes, I played Mary had a little lamb- he cracked up laughing! His mother was delighted. Then we would talk about when his younger sister was a teen, and I turned to him and asked is she was a trouble maker, and he said "Yes", and started to laugh, then cry.

So if he'll allow you to visit, go every week. But realize this will not be easy for you, I can promise you'll often leave in tears. One of my folks lived 30 minutes away, and often on the drive home I would have to pull off the road because tears were swelling up and I couldn't see to drive. If you're going to step up and be a friend, be there, and don't drop out. Your support will be very supportive to his spouse, she'll also need your support. In my 15 years w/ Hospice, I have had 105 people die, and FTD and ALS still make me cry. So prepare yourself, this won't be easy.

I would also contact the AFTD, Association of FTD, search for them on the internet. They can provide invaluable support to the family while he goes thru this.

Sorry for the long message, but there are no short answers. For those of you who are reading this, contributions to the AFTD will be of tremendous help to the local chapter. Most often they get no federal funding.

Let me know if I can help...
 

Boston Bill

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Jul 31, 2018
Messages
10
Pretty much what I was going to say. Do not get mad, argue, or yell, they literally have no idea what is going on or why. Do not argue or correct them. Monsoon outside? "It's sunny out? Why it sure is sunny, isn't it!"

They will ask you the same thing over, and over, and over, just tell them again, or better yet, whatever they want to hear, it makes life easier for everyone, especially them.

When they have good spells, ask THEM what THEY want done, where THEY want to go to stay. Ask what THEY want with them. That ratty doll they had for years might be their best friend and the security blanket they need to cope with not being able to cope anymore.

DO NOT take what they say personally. "I hate you! I never liked you! Get out!" Two minutes later they won't know who you are, or that anything happened.

Tell them you love them, even if you would happily rip their heart out, you hurt so bad, and are so angry with them. They are as bewildered as you are, only they are trapped with a brain that is misfiring, nothing is working right, and nothing they took for granted their entire life is right anymore. They are scared, terrified, confused and trapped in a body that used to be their's, but it has turned on them and they can't leave or get away. They are stuck in a dark and lonely spot, all alone, with no light or help, 24/7. Remember being a small child, hiding under the covers and listening to all the creaks and bangs, and the wind moaning through the trees? That is their life, 24/7, and no one will come to tuck them in, tell them it is alright, there is nothing to be afraid of, because it is all in their head, they can't get out, and it knows their every fear.

They will need professional help 24/7, so find a good nursing home with long term help, that is clean, and they can afford, even if that means their whole Soc Sec check every month, or whatever. Do that NOW. Get any cash/real property out of their name, do that NOW! The state will take everything they worked their whole life for, piss it away, and put them in a home you wouldn't put a rabid rat in. Get the entire family in on this and agreed to, in writing NOW. Get a durable power of attorney NOW! Do NOT wait! Do it NOW! Tomorrow might, literally. be too late to do any good.

You do not want to know how I know this.
We were lucky. The level of care my Mom needed she could afford. In a couple of decent places. My brother took good care of her that way. I didn't deal with it very well. It was a long 5 years and that was like yesterday. Almost 5 years ago now. I'm glad my Dad passed 1st and didn't have to see what she went thru.
 

taz4712

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Jul 29, 2018
Messages
258
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Philadelphia Suburbs
Pretty much what I was going to say. Do not get mad, argue, or yell, they literally have no idea what is going on or why. Do not argue or correct them. Monsoon outside? "It's sunny out? Why it sure is sunny, isn't it!"

They will ask you the same thing over, and over, and over, just tell them again, or better yet, whatever they want to hear, it makes life easier for everyone, especially them.

When they have good spells, ask THEM what THEY want done, where THEY want to go to stay. Ask what THEY want with them. That ratty doll they had for years might be their best friend and the security blanket they need to cope with not being able to cope anymore.

DO NOT take what they say personally. "I hate you! I never liked you! Get out!" Two minutes later they won't know who you are, or that anything happened.

Tell them you love them, even if you would happily rip their heart out, you hurt so bad, and are so angry with them. They are as bewildered as you are, only they are trapped with a brain that is misfiring, nothing is working right, and nothing they took for granted their entire life is right anymore. They are scared, terrified, confused and trapped in a body that used to be their's, but it has turned on them and they can't leave or get away. They are stuck in a dark and lonely spot, all alone, with no light or help, 24/7. Remember being a small child, hiding under the covers and listening to all the creaks and bangs, and the wind moaning through the trees? That is their life, 24/7, and no one will come to tuck them in, tell them it is alright, there is nothing to be afraid of, because it is all in their head, they can't get out, and it knows their every fear.

They will need professional help 24/7, so find a good nursing home with long term help, that is clean, and they can afford, even if that means their whole Soc Sec check every month, or whatever. Do that NOW. Get any cash/real property out of their name, do that NOW! The state will take everything they worked their whole life for, piss it away, and put them in a home you wouldn't put a rabid rat in. Get the entire family in on this and agreed to, in writing NOW. Get a durable power of attorney NOW! Do NOT wait! Do it NOW! Tomorrow might, literally. be too late to do any good.

You do not want to know how I know this.
I think I can relate to how you know this. All of the information is spot on. Anyone with a Loved One experiencing this MUST remember that the person sitting in front of you is STILL the same person who took you fishing, baked your birthday cake and so much more. Remember those times while looking at them and speaking to them. That is the way you want to remember them. Patience and Understanding will help both of you. No matter what they say or do somewhere inside maybe very deep inside they still LOVE YOU. Peace
 

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