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If he will allow you to visit, then start visiting him every week or so, because he will only become more withdrawn.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...