Can anyone offer some input on what it's like to be a family member to someone with this? I'm doing research now, but right now, I'm focusing on the progression and medical side of things. What kind of ride are we in for?
10/9/2009 12:00:35 AM
my grandfather has it, but it hasn't really gotten terribly severe yet. it starts with absent-mindedness and memory loss (seems like short-term memory fares worse). Judgement starts to be impaired a little, too, along with just general cognitive ability.
10/9/2009 12:06:19 AM
Well, my grandfather has moved from, since at some point this year, totally capable, 100% his old self, to- cancelling all speaking engagements- getting lost while driving- getting...not catatonic, but less interested in life the way he used to be, but not quite depressed; just less mindful and proactive- avoiding family and lifelong friends- confused- having trouble remembering in general, as well as trouble converting what he reads to speech, remembering words, and other verbal skillsHe's quickly becoming apathetic, and is getting very, very gaunt and frail. He's always been a hale, strong man. Apparently, in <2months, he's lost a fuckton of weight and he's aging at an unbelievable pace. I didn't think to ask what stage he's at - it's either the bad end of stage 3, or the beginnings of stage 4.I don't know how much meaning there is in such a rapid progression - whether or not it's an indicator of how his disease will run, or if it's just going to be fast for now. (Yeah right )
10/9/2009 12:13:32 AM
I've read that it can often progress very quickly, then very slowly, then very quickly again, and so on.and I've also noticed with my grandfather that he's started to shy away from social situations, and he, too, has lost interest in doing the things he used to like to do (which I think is at least partially because he knows he can't really do them any more).
10/9/2009 12:15:44 AM
How are his kids faring? What kind of family dynamics are there?Basically, all I know for this angle is: we're all in for a lot of stress and pain, and it's not going to be pretty.[Edited on October 9, 2009 at 12:19 AM. Reason : dsf]
10/9/2009 12:18:09 AM
it is one of the worse diseases ever...adult to baby and then death...slow and painful to deal with (mentally, physically and emotionally draining to the care giver)....it eventually gets to the point where they act like a baby....at the stage, you are basically ready for it to end because nobody wants to live that way....and usually the end is right around the corner. It takes years to get to that stage....the slow killer.[Edited on October 9, 2009 at 1:36 AM. Reason : w]
10/9/2009 1:31:45 AM
just about everything i could say in regards to this topic has already been posted.it really, really sucks. not just for the person that has it, as they usually don't realize what's going on... but for their family as well. my grandpa had it, and it was one of the saddest and most hurtful things to see him go from the person i knew when i was growing up to who he was right before he passed away. i'd type more, but just thinking about it gets me really upset.
10/9/2009 7:08:13 AM
A close family friend's father died with Alzheimer's. Her father became angry and extremely violent. He would, for example, become confused about where his wife was driving and threaten her until she stopped the car. That he reacted by becoming angry and violent made it very hard on the family.My great aunt had Alzheimer's before she died. She would become confused, lost, forget what she was doing, her cooking would catch on fire, she'd try to put pans in the washing machine, accuse people of taking things or moving them. Her children were in denial about what was happening to her for a very long time, things had to become unmanageable for them before they admitted that something was wrong with their mother. They eventually had to put her in a nursing home because they could not keep her safe.
10/9/2009 8:42:09 AM
It sucks big time. I remember the first time it was obvious my grandmother didn't remember me or my sister, even though I had lived with her for almost 10 years. I had never felt so depressed as I did that day, and it went downhill from there
10/9/2009 8:56:28 AM
My Grandmother has alzheimers, and has had it for about 2 years now.First year was definitely noticible changes, but at this point, she is already almost all gone. Walks out of the house naked, introduces family members to each other (if she remembers who you/they are at the time) ... cant be left alone.My grandpa, bless his heart, takes care of her at home, but really, at this point, should have her in a home somewhere, where she cant walk out.His retired life is now basically 24/7 taking care of her, instead of doing any of the things that he normally would do.
10/9/2009 9:00:48 AM
Yeah I think it's really important once they get into the advanced stages that they are placed in a 24/7 care facility. My grandfather tried to do everything on his own and he simply couldn't. As soon as he would fall asleep from exhaustion she'd be out the door wandering the streets doing who knows what. It was really awful. It took so much to finally convince him she REALLY needed to be in a home. Once she was there he would visit her every single day. In the 6 years she was in the home, he only missed visiting three times and that was because he was so sick the home wouldn't let him come inside. It was really sad Before she was placed in the home she broke her arm twice and her nose once. It's because they forget how to fall and they just go splat. It's crazy.I've already told occamsrezr if I get diagnosed with Alzheimer's he should just take me out back and shoot me. I don't want to go through it
10/9/2009 9:05:25 AM
i'm pretty sure i have this, my memory sucks ass
10/9/2009 9:30:22 AM
As has been said, it really, really sucks. I saw my grandfather go from a strong, fit, gregarious man with a sharp mind to a gaunt, frail person who could not speak, could not care for himself, and could barely move. It took, if I recall correctly, 4 years from when he was diagnosed until he passed away in 2001, but he had been showing symptoms for a couple of years before that such that the diagnosis was mostly a formality.He started like has been said--forgetting words for common items, speaking a little more slowly, forgetfulness, going into a room and then not knowing why he was there, little things. Progressed to getting lost while driving, using the wrong implements for things without realizing it (trying to eat soup with a fork, driving the ball with a putter while golfing), and the loss of more speaking ability. My grandmother first had to get a nurse to come in and take care of him during the day once he could not be trusted alone in the house but could also not perform well in social settings, since she was active and could not cancel all of her engagements, then he was moved to a "standard" retirement home, then to one with a ward that specialized in Alzheimer's patients. By the last few months of his life, he was completely bedridden, had lost the ability to communicate, and didn't seem to recognize anyone, not even his wife or family. At least by that time, we hope he was no longer "there", so to speak. During the middle stages, it was really painful to see him struggle for words and to express concepts that were obviously vivid to him, and he would get visibly frustrated and sad. Though one curiosity was that he remembered and spoke of events from his childhood that he hadn't talked about in years, if ever. Sometimes he spoke phrases in Italian, which was a language he did not know, but had heard his father speak as a young boy.As to the family members, it's extremely tough, I won't lie. It was too painful for me to see him much towards the end, which I feel guilty about, but the person lying there in the bed was not the grandfather I knew. His daughter, my mom, was really good about visiting frequently, though it took its toll on her. She's never been quite the same after losing her father in such a hard way. His son, my uncle, had a harder time--there was a distance factor (he lived in Richmond, VA, and my grandfather was in Greensboro, NC) plus he just couldn't handle seeing his father in that state either, so he didn't visit very often. My (step) grandmother had trouble getting over that, and while they didn't stop speaking or anything, they hadn't completely reconciled when my uncle passed away unexpectedly about a year later, and relations are still a bit strained between my grandmother and my aunt/cousins. And my grandmother, his wife of 28 years? (they married after my biological grandmother died in 1982)? Really, we couldn't have asked for a better caretaker. She kept him at home as long as she could, tolerated his difficulties with love and understanding, visited him every day once he was no longer at home, and did everything she could to make sure he had the best care possible. She handled it remarkably well, though as I noted at the cost of some family relationships (and she and my aunt never really got along that well anyway). The process definitely aged her too, physically and in terms of emotion, but she is still indepenent and mostly healthy 8 years down the road, so time does have a distancing/healing effect.Sorry for the short novel...there's not too much else I can say except that it's going to be difficult. Just be there for him, make sure you have patience and understanding, and try not to let relationships within the family suffer too much. If you can all remember that different people handle this tough time different ways, and that not everyone can play the caretaker role equally well, it will help a lot. Best wishes to you and your family.
10/9/2009 9:31:24 AM
Thanks, yall. Maybe it's weird, but I want as many of those anecdotes as y'all have. It's such a hugely variable disease that knowing what's out there that we might face...I'm nosy and want to know as much as possible and that's the kind of information that I haven't come across. Maybe I'm looking in wrong places.I talked to my dad this morning, and it seems the reason he's withdrawing so hard is out of shame that he can't remember the names of people he knows he should. This pains him so deeply.
10/9/2009 11:17:04 AM
His emails sound like they're written by Nigerians now
10/27/2009 9:23:04 PM
10/27/2009 9:39:24 PM
a close friend's grandpa progressed really quickly near the endthe only person he could consistently recognize was jean-claude van dammeonce he got to not remembering that his wife was passed/his siblings had passed and things of that nature, he became volatile and uncontrollable--it was crazy when my friend's mom was taking care of him and working full time. eventually they had to put him somewhere so he could get professional care until he passed.it was so terribly stressful for her and her family. gl
10/27/2009 11:08:53 PM
in 2000 my grandfather was diagnosed with cancer and died less than a month later. that was easy compared to this. in 01 my grandmother was still teaching at an elementary school and we started to notice MAJOR problems in the spring. In the years leading up to in, she would go on mean streaks when we were at her house and do wierd things like be very possessive over the tv remote and cordless phones (hide them or lock them up), turn the heat on in the summer and go off if you touched it, and cook with dirty dishes swearing they were clean (this made us only question her vision for years)we began to notice nicks on her car and she would hit things and one day she hit a mexican who ran away. after telling us about it, my mom took her keys and forced her to retire from the school. My mother retired and began to stay home with her full time. By 2003, she began to fight us if we didn't let her out and constantly get up in the middle of the night with a medley of clothes proclaiming she had to go pick up kids who were waiting somewhere alone for a ride. When she was in the bed we would here her in her room and listen in and she would be carrying on a conversation with two small children as if she was trying to put them to sleep. By 2005, she had lost all sense of whats going on. No responsiveness and no conversations. She now only recognized my mom and often cried out for her oldest sister who had been dead for 20 years. The only thing she could say to you was "get the hell off of me" or something like that if you tried to help her. Lots of pain and frustration on her end. They tried a few full service homes but hte people take crap care of the patients and there is so much negligence and maybe even abuse going on at these places that we couldn't let her stay.Now, since 2007 shes back and a complete infant. Boo hoo crying all the time and calling for mama. I don't even think she recognizes my mother anymore.Its been a very tough 8 years. My mother and a few of her siblings don't want to accept the fact that shes "gone" but many of us have realized the true her has been gone since 2001.[Edited on October 27, 2009 at 11:43 PM. Reason : m]
10/27/2009 11:41:04 PM
Aricept has helped people in my family quite a bit, both for Alzheimer's and post-stroke Broca's Aphasia.
10/27/2009 11:41:58 PM
My dad and his dad both have/had Huntington's Disease which progresses very similarly to Alzheimer's. I was too young to remember much about my grandfather's condition, but I can tell you a lot about my dad. For me, the hardest part is personality change. I don't know that he is a totally different person, but parts of his personality have been accentuated (mainly anger/being short tempered). He has always had a short temper, but over the past few years he flips out over anything that doesn't go exactly his way. He has never been a very open person and we've never talked about it much, but if I had to guess I'd say the scariest thing for him is his memory loss. He got lost driving to his office that he has worked at for 28 years driving back from a client's that he's been working for for 10 years. Since then, he has had somebody from his office ride with him when he leaves the county and we bought him a GPS for Christmas that he refuses to use, but also refuses to take out of his truck. He is also a very proud person and I think another really hard thing is for him to admit that he needs help. Some minor issues are him telling the same stories over and over again, asking the same questions ("what classes are you taking this semester pete?" "when are you supposed to graduate?" etc). The biggest issue for the whole family is his whole attitude though. For lack of a better phrase, he is pretty much a complete jackass now, and the whole family is starting to resent him. I am not trying to sound crass or insensitive, and I do my best to remember that most of it isn't his fault, but it is really really difficult to deal with him, and I just do my best to avoid bringing up ANY sensitive issues, but the fact remains, he has become a very difficult person to interact with.So my advice is don't ignore it, discuss everything with him and the family, and most importantly don't let things get to the extent that they have with my family.
10/28/2009 12:01:29 AM
^^^ this is what drugs are for people... if someone is that far gone, just put them on some morphine/heroin and let them live their final years out in peace and relaxation. goodness knows they deserve it.[Edited on October 28, 2009 at 12:06 AM. Reason : s]
10/28/2009 12:06:27 AM
...Make with the facility recommendations, please.I don't know if assissted living, nursing home, or some other arrangement is what we're looking into. Mom just said "some of the better facilities".As far as geographic location: Raleigh, Cary, Clayton, Garner, Fuquay, Angier, Apex, Holly Springs, etc. [Edited on December 11, 2009 at 12:18 PM. Reason : asdl]
12/11/2009 12:13:16 PM
I'm sorry to hear that you're having to go through all of this.
12/11/2009 12:31:55 PM
Eh.Life happens, good and bad.[Edited on December 11, 2009 at 12:35 PM. Reason : i.e., thanks]
12/11/2009 12:35:28 PM
The oaks at Carolina (or something similar) is pretty nice. They also have specific training (for at least some of the staff) on dealing with Alzheimers. It is on lake wheeler road near tryon. This is where my Grandmother is and my whole family are pleased with the people there.PM me if you need more info. I would be happy to try and help make this process as easy as possible for you and your family. [Edited on December 11, 2009 at 1:20 PM. Reason : PM]
12/11/2009 1:19:18 PM
nice looking facility from the outside.
12/11/2009 1:25:12 PM
3 of my grandparents had it.-Get him one of those metal medical bracelets that has his information on it-Take care of the estate now, as soon as possible, while he/she is still cognizant. Get the Will and Power of Attorney sorted out.-Prepare to take away his license, possibly sell the car-Make arrangements for where he will live in the next 2-5 years. You will want somewhere with a graduated program that can offer more intensive care later. It will make for an easier transition.-Enjoy as much time with them as you can right now. Ask them questions, take pictures, videotape them. My grandfather wrote me a letter when he showed the first signs. He was a M.D. thoughGood luck
12/11/2009 4:57:30 PM
12/11/2009 4:59:39 PM
My grandma was 87 when she had a massive stroke. After this was when she was officially diagnosed with alzheimers. She was ''just getting old'' up until that point.After the stroke it progressed rapidly. She was physically unaffected by the stroke, amazingly. She did her rehab and was stronger and more able than ever. Her mide quickly faultered though.It was a matter of two months and she went from stage 2 to well into stage 4. She had no idea who I was, and she kept asking if my cousins were my kids, who I was, that she was a good aunt to me, why was she here...... It was rather difficult.That was just the social aspect. She forgot how to pour. She forgot how to use silverware. She fogot that she needed to go somewhere else to use the bathroom.She passed away 3 months ago.
12/11/2009 5:29:45 PM
how about this story. don't think it ever hit the news. hell, it may be just a neighborhood rumor.old couple lives (lived) in the neighborhood. both had been bad off for quite awhile and barely makin it each day, but kept chuggin along. about a month or two ago, the old lady walked to a neighbors house and said "there's a strange man in my bed". the neighbor went with the lady to check it out and come to find out, it was the old lady's deceased husband. he had been dead for 2-3 days and the old lady's health/mind/alzheimers was so bad that she did not know what was going on. needless to say, the old lady is now in some old peoples/mental hospital and the house is up for sale. wonder when that one hits CSI.
12/17/2009 6:19:42 PM
awww He was deemed incompetent last week. We also found out that he tied up all his money in some life insurance/annuity scam with a really sleazy company (think multiple class action lawsuits skeezy) about two months ago. Fortunately, there's a significant paper trail attesting to the altered mental status and we think the attourney can get his money back.Until that happens, we don't even know how much there is, so we don't know what kinds of care to be looking into, or whether he's self-pay or not, or what. He's stopped bathing regularly. This is a man who showered every morning, even if he was going to get dressed in overalls to go farm. He's always been a stickler for proper etiquette and manners. He set the table the other night with two plates and a box of cereal. And apparently, he had pickles for breakfast once this week. I'm thinking "Okay, that's kinda funny", and if it weren't poppops, it really wouldn't be weird to me at all I am so shocked at how fast this is going. It's so, so, so fast I mean, if he's gotta go this particular route, fast is the way to go, but HOLY. SHIT.
12/17/2009 6:27:00 PM
My grandmother died in 2005 after about 4 years with Alzheimer's. Her care center was Falls River Memory Care Community off Durant Rd. near the intersection of Durant and Falls of Neuse. It's a block or two over from the new Wake Med place up there.I wasn't too involved with this...I got the impression this place wasn't perfect and was quite expensive, but she stayed there to the end with no other harm coming to her. I think it's always good to go for an Alzheimer's only facility.I hope your grandfather's transition goes as smoothly as it possibly can. My mother has five siblings and the fight over my grandmother's estate and care tore the family apart.
12/17/2009 6:38:50 PM
So it might not even be alzheimer's, or, if it is, it's happening alongside either creuzfeldt-jakob, or frontotemporal dementia (FTD for short, but I keep hearing FDT in a family setting, no less).This is sad to watch and see happen, but it's not caused a horrible emotional assault like we all braced for. He's relatively happy and healthy (and when he's not, two hours later, he's forgotten that he had even cried), so it's not too painful for the rest of us to watch and cope with. Some really awful family drama went down between him and his brother recently, and while we are all fired up and aggravated and sad at it...he's the one who cried receiving some news, but he doesn't even remember the start of it all, or the end, so he feels no sadness or anger over what transpired He really, really slides fast. He had a lumbar puncture to rule out some diagnoses, and that really aged him. He's frail now - he even hunches over like an old man. He was the epitome of a hale, hearty, "retired" farmer. I don't know about the rest of the family, but for me, after just one afternoon with the way he is now, I found it very easy to let go of the grandfather I used to know. This is what he is now, he's going fast, and I think that all this is actually going to make his death easier on us later, because with his mind and body going so fast, we have no choice but to be saying good-bye to him as this happens.I think I'm glad there's something happening alongside the alzheimer's, if it's even there, because of how all this is going down (thus far).I love this picture of him:[Edited on February 18, 2010 at 11:51 AM. Reason : DLFKJG]
2/18/2010 11:46:35 AM
Both my grandparents had it. It's the worst thing in the world. You lose all touch with them, you can't communicate with them and they don't know who you are. They are just there "lost"Cherish as many moments now that you can and be prepared to deal with all the family stress of having to deal with such a thing
2/18/2010 2:55:56 PM
My grandfather had it and it was miserable. His father had it too which scares me to think my father or even myself may have it when that time comes. But it truely is heartbreaking to see them look emptily at you and not have any idea who you are. As ^said, cherish the moments, take lots of pictures. My grandmother on my mom's side was starting to develop some symptoms, but she was already so sick that it didn't get that far. terrible disease
2/18/2010 3:01:56 PM
I'm now going down there every week. I don't know whether I'll take my camera. The picture I posted above is what I want to remember in 30 years, not the pictures we took last month.It's going to be a lot easier in a few weeks, once we can get him into the garden. If we can get him to do something, he sharpens up a bit, gets animated, and it's like his regression is rewound by 6mos or a year. The old standby was to look through old slides - like, like to the 1950s But at this point, he's not able to recall who people are, or to tell the anecdotes that go with each slide, like he used to be. I've never wanted to do that with him because I feel like at this point, that's setting him up to fail, and frustrate or embarrass him. Put him in a garden, though, and fading memory doesn't matter anymore (Plus, I want to make pickles with him at least once. I only discovered this past year how DELICIOUS his pickles are )We're making the best of this. That's about all we can do. The family dynamics aren't like you all probably had: gramma and poppops were missionaries in africa for 25 years; africa for four years, NC for one. At middle school age, they all went to boarding schools; they didn't start africa til about that time for my dad (the eldest). I pretty much didn't have grandparents until 1997...and because of my own problems, I didn't get to start building any kind of relationship or appreciation for them until 2002, at 16. And then gramma died in 2004, and things started to splinter, because poppops had favorites, and he never tried to hide that, and up until this, some of the siblings had no problem flaunting the fact that poppops valued his time with them more than he valued time with the others.We're not an exceptionally close, affectionate family (which has become a silver lining), and that really became clear after gramma died. None of us appreciated what she did for cohesiveness until she was gone.
2/18/2010 3:28:24 PM
2/18/2010 3:52:36 PM
my grandfather had a stroke several months ago. the blockage is still opening & closing and they're not able to do anything to treat it besides meds, so he has these plateaus or stable periods for a while, then gets a lot worse all of a sudden. it's a like stairs instead of a ramp. he's never been an affectionate man, never really talked a lot about anything beyond casual conversation about the weather. he's always been a stubborn grouch...but now he's happy sometimes. like creepy happy. then he goes into a depression phase where he yells at my grandma (who has stage 4 renal cell carcinoma and only 1 kidney left), calls her names, threatens to leave her. she's the one taking care of him, fixing his meals, etc. she is the last person on earth who deserves this.he's started ordering lots of stuff off of infomercials. that scares me b/c of all the insurance scam crap out there, but so far he's done okay. he got my uncle to go pick up a necklace from kay's that he saw a commercial for and gave it to my grandma for "halloween day", which was valentine's day. he only bathes if someone demands that he does it. he sits in his chair for hours doing absolutely nothing, the tv's not on, no radio, nothing. he sleeps 16 hours a day. he tells my mom that he talks to chelsea (her dog) at night. mom lives 12 miles away from their house. i've seen him whispering to something down low, like a dog, and talking to no one. taking away his license and keys was difficult. he fought it, the doc wouldn't call the dmv to have them revoke it even after he hit my grandma in their driveway. they finally took his license, my uncle took the keys, and papa still gets riled up about it every once in a while. he tried to run away on a bicycle, saying he would be okay b/c hardee's had biscuits 2 for $1. he wouldn't have made it a foot on a bike. we took all the firing pins out of the guns we could find. oh, several weeks ago he was cleaning out a desk or something and found a stack of playboys from the 60s. he took them down to the firestation to see if "the boys there need something to keep them entertained". you never know what to expect from him, and it's scary. i've never been super duper close with him like i am my grandma, and his weirdness makes it a lot more uncomfortable for me when i'm around him. that sucks, but that's just how it is.
2/18/2010 4:10:51 PM
i totally forgot why i clicked this thread
2/18/2010 4:17:07 PM
Oh, yeah...at Christmas, he lip-kissed his (absolutely stunning...she's disgustingly pretty) daughter in front of the whole family. That was Mom just called to tell me that his neuro expects him to be in a nursing home in 3-6 months, owing to either violence, wandering off, or being unable to participate in his care. This'll be in Statesville :-\. She's been nagging me for a while to visit more, and I was resisting until now-ish (i.e., almost spring = gardening and planning gives me something to talk about with him). And then I had a horrible, horrible dream the other night about all this business, and I woke up feeling as horrible as I did in the dream, and I decided to view those feelings as a preview of what I'd feel if I continued to put him off, and that it was time for action. Good timing, I guess.
2/18/2010 4:24:31 PM
yeah, i live less than i mile from them and see them about once a week. if i can't get over there then i call and talk to my grandma for a while. my mom is a nurse at the hospital, which is less than a mile from their house too, and she goes by every day. my great uncles, grandma's brothers, are very helpful too. even the neighbors will help out w/ doctor appointments and stuff. my uncle lives in SC but he comes up every couple of weeks or as needed.i just wish that for the sake of grandma that they would let a home health nurse come by and help out. mom does this now, but it's been HELL on her and she needs some relief...but grandma and papa are too proud to let someone else in the house. i can understand it, but i can see the toll it's taking on my mom too, and they really need to let someone else help out. mom's mental faculties have gone downhill lately too from the stress. i feel sorry for him and it's horrible that he had a stroke and is continuing to decline, but i think i hold a lot of resentment towards him for how he is treating my grandma (and occasionally my mom). that makes me feel horrible for thinking that. my aunt and mom feel the same way. in their words, he's been an asshole his whole life and grandma's been nothing but giving, compassionate, thinks of EVERYBODY else besides herself. she deserves so much more.[Edited on February 18, 2010 at 4:35 PM. Reason : ]
2/18/2010 4:31:22 PM
I'd offer advice on some of that, but it sounds like ya'll have a fantastic system in place, and have probably made all the usual salient points and good arguments :-\
2/18/2010 4:39:50 PM