Hello friends...
My grandmother I believe is in end stages dementia. Being cared for by my uncle at home. It seems right now she just cries uncontrollably......all day and all night. My uncle is having such a difficult time right now, and this "crying" is just about to put him over the edge. I think I may have asked this before, and someone may have said that it was a way of expressing their helplessness and their only way of communicating, much like a baby. That made so much sense to me. My question is, is this common? Is there anything we can do to try and stop this? She needs a break from it, and so does my uncle.
Any thoughts would be so appreciated.

Thanks, Carsam:angel:

Dear Carsam,

I wish I knew - did anyone try an antidepressant? You are all in my thoughts and prayers.

Love,

Martha

Sadly it is very common.

When my DH was first diagnosed he was on an antidepressant along with Aricept & Namenda and he still had periods of crying but they were brief. I really don't know if an antidepressant at this point would help but I would check with her doctor. My DH was pacing at the end with high anxiety and there were meds to help relax him so he could be calm and peaceful. This might be something to look into for your Grandmother.

Good luck,
Janie

Carsam...I'm just so sorry your family is having this challenge.

I remember my own mother doing short crying spells...the antidepressant did seem to help. That period only lasted a month or so.

Are you absolutely sure she is not in some kind of pain? Bless you, bless you for being the shoulder your uncle so desperately needs........Pam:(

I'm so sorry you are all dealing with this horrible "thieving" disease too.
Are you or your uncle able to get the sense of actual distress behind the constant crying? As WasFatNoMore said, could she be in physical pain that's somehow being missed, or even aware enough of herself and her circumstances to be in emotional pain? Or rather does she seem to be on "auto pilot" like when a baby cries almost from habit or boredom without any real force or intensity or pain behind it? I know with Alz. the brain's signals are so fouled up it's different and harder to "read" what behaviors mean than in a child --

BUT -- if it sounds like real distress (but not something physical you can fix) maybe it would help to try an anti-anxiety like Ativan (lasts two or three hours, maybe for occasional use?) or Valium, which I understand is basically the same family of drug with same effects but lasts longer each time. I understand these are newer types with basically no chance of addiction.

Or as a last resort, the much stronger, older tranquilizers that aren't used as much as in the past because they are very addictive? (I think like thorazine or Miltown, but I may have the wrong names.) I mean really, if she's in late stages Alz, would addiction matter? If she could feel a sense of well-being inside, even though drug-induced, it seems that would be truly merciful as well as possibly ease the crying at least some.

Hello again..
Thank you so much for all your responses....this is such a wonderful support group on this board for this illness. I wish everyone ever affected by this knew of this place....and the people on it.
They have tried anti-depressants several times, for some reason she cannot tolerate them, they make her so she cant sleep and she actually gets very agitated. They have gone through so many different medications, not much seems to help. Maybe it's her age, I dont know. She is 95 next month. I dont think she's in "phsyical" distress, right now she keeps crying for her "mommy and daddy to please come and take her home". I think not only has the illness itself really made her suffer, but the fact that her family has abandoned her, has been something horrible even worse. It's hard to be a healthy 90 year old, never having had so much as a headache, surrounded by 10 children, and about 40 grandchildren. And in 5 years, she has lost two sons, and her family has all disappeared, through the bitterness and resentment that comes with caregiving. I just pray for peace for everyone, I really hate this illness.....
Also, her doctor on record, sent a letter to the house, stating that the 'rest of the family" (the ones who never visit), want her in the mental hospital. He also said he would not visit the home again as there was too much hostility in the family, and the only thing he "would" do, is to sign the papers to admit her to the hospital. All the siblings want her to go to this mental hospital, where she will be sedated all the time as she cannot walk by herself, and due to her other symptoms. This is what we've been told by the staff. My family all want her there, funny though, none of them are willing to "take" her there. They want her one son who has given his life to care for her to be the one to do it.....how cruel can people be? Did I mention I hated this illness?

thanks so all for listening....and for your support.
Carsam:angel:

We all hate this illness, Carsam -- that may be why people here are so caring and willing to share and help where they can. We are united by being faced with a devastating disease.

Sometimes I remember my Mom as she was just before death - so helpless, thin, hollow eyed. Then I try to replace that vision with the thoughts of her as she was before. Like your grandma, at 90 she was healthy and happy, surrounded by family and friends and well wishers; we gave her a huge party and every one of her male guests danced with her, even my son who at that time was a non-dancer....

That is a day I relive in my mind often. Yes, it went downhill pretty fast after that, and as I have mentioned before, my sister and her kids, their spouses and her grandkids neglected Mom entirely -- as soon as they saw her as ''memory impaired" they felt too awkward to go and see her and make inane small talk with her and answer her same question 101 times. I now believe that some people just cannot cope with this disease. They have to stay away --- or they will become aggressive or sick themselves. So it's best if they do stay away. Meanwhile those who are able to be caregivers, give their all and are left depleted, at least for a while. But at least we know we did our best.

But we did have our real Mom until around age 93 or so --- more than many other people do -- and my brother and I and our kids and grandkids did make the effort to spend time with her, so she felt loved and accepted right to the end.

Still I hate this disease .....

Love,

Martha

Saying she will be "sedated" can mean different things, not necessarily negative. Doesn't have to mean your GM will be overdrugged or kept like a zombie. It could just mean the right doses of the right meds so she will be calmer, happier and maybe easier to be around, which might encourage some visits, which you mention she misses and doesn't understand why they're
gone.

In other words, no offense but is it possible your dear GM might actually be better off in a mental hospital? Have you looked into what her days and night would actually be like there, whether they are likely to improve or get worse? Your uncle certainly seems to have done so much he is possibly coming to the end of his rope as well.

Although I must admit, I was wondering why the hands-off relatives want specifically a mental hospital rather than any other type of senior care facility. I am probably ignorant but wasn't aware Alz. patients are sent to mental hospitals. It sounds odd to me as we all know, unfortunately, no amount of "mental health treatment" is going to really restore her mental health and functioning, which I assume is the goal of most staff and treatments offered in mental hospitals. Do they have a special Alz. wing with staff who know how to deal with Alz.?

Another thought I had was -- If your GM stays where she is, is she being seen by an astute and at least halfway-caring doctor? Should you consider getting someone new involved in her care? As in any profession, some docs have more expertise (and patience and interest) than others in figuring out what dosages and combinations of meds suit different elderly patients.

So sorry for this tough situation.

Carsam...when you mentioned "she can't sleep"...that is actually one more tragic phase of this disease. It's called "Sundowning", and most Alzheimer's patients will do this. Often they are up all night "prowling".

About 4 months after my Mom went into the Alz. facility, she was sent to the psych ward at MCO (Medical College of Ohio) because of getting into a fight with another client. I later found out that almost all of the clients are sent there for a short time...Mom went for 1 week. I'll never forget the horrible feeling I had the first time I visited her there...she was sitting on the edge of her bed quietly playing her harmonica...tears streaming down her face. The lady in the room with her had removed all her clothes and was screaming. Even the nurses questioned why Mom was placed there. Although she was on antidepresant meds, we noticed a change in her.

Behaviors are different in each person...and sometimes very much alike. This board has helped so many of us realize we're NOT in this alone.

Keep asking questions...read everything you can about it...and be patient with your loved one. The stages will change just when you're getting used to behavior. I've had to think of Alzheimer's as "an interesting disease" in order to get thru the last 10 years.

(and I have to say...seeing the very obvious changes in the 3 persons close to me with Alzheimer's has sure made me look at my Special Needs students at school in a more understanding way. Remember "perception is reality"..........I have to repeat it to myself often).............Pam;)

Hello again ladies....you are all such a blessing.....I wish my uncle was able to come here....he's not too great with a computer though.
Anyways, you know, I've asked this question so many times myself, why is there not anywhere like a decent nursing home there that could take her. Yes, for the longest while, I dont think my uncle would have gone for that idea anyways, but he's now at the end of his rope and has told us if there were somewhere decent that would care for her, he would "carry her there on his back". Ladies, I dont understand it myself, but he has gone through so many doctors. Her original doctor after trying different meds etc, basically just started not really caring anymore, or that's the impression my uncle got. I dont know what it's like where you all come from, but it's sad to say, and I hate it, but sometimes old people just dont get the same priority and quality of treatment, you know?
She's not exactly incontinent, she still feels the "need" to go to the washroom, but she cannot go alone. She does have some "accidents". She does alot of times need assistance to eat. She cannot walk by herself. She has very bad hallucinations which get worse when she doesnt sleep. She can get very very angry, and very agitated. TV can not be on because there are "people" in it. She sits mostly all day....eyes closed even when she's awake. I dont know what to say except they've told him that she is not a candidate for a nursing home, this one hospital is his only "permanent" choice. I dont live there, but I've heard his pain, enough to know he's not making that up. Last weekend, she went to some sort of place that people can take their loved one to so they can have a break. I thought this was wonderful, this was what we were looking for. Two days she was there, she didnt eat one bite. She was "alert" when she went in, and came out dehydrated, medication caked on her mouth because she wouldnt swallow it, and she was shaking. She had to be taken to hospital that night when she got out, the doctor said her sudden turn was due to "the change in environment", and she was heading a "bad way". I really dont know. About a year ago, she spent a week at this "mental" hospital. She had a private room, and when my uncles (two of them) went to visit her, an old man was leaning into her and calling her really vulgar names, and the woman sitting in the corner was agreeing with him. My grandmother just sat crying. A couple of days later, my uncle was going to take her out, and they asked him to come earlier, I dont know what happened, but apparently one of the patients was found in her room giving her a hard time. This is where they are telling us is her only option.
I know it sounds ridiculous that this is "it", but I can tell you, the healthcare there doesnt sound great to me at all. What kind of system is that? As I said before I may have said "maybe he's just not ready to accept a nursing home", but now I can tell by listening to him, he would take her there tomorrow if there was somewhere that would care for her properly.
As far as the rest of the family goes, I can understand that maybe some people cant deal with illness, but that doesnt excuse them. My uncle can barely get out to get milk and bread....if they cant deal with it, there are other ways they could help. They could drop off groceries, they could take piles of laundry and do that. Anything to ease his burden. They should be grateful he's willing to take care of "their" mother. But even last month, when he had a doctors appointment, he had to cancel it because no one could be there with my grandmother. I honestly say "what goes around comes around"....and yes, I am bitter. I am bitter that 3000 miles away my mom and I are the only ones that my uncle has he can reach out, when there are people a 5 minute car ride from him. A few weeks ago, my aunt stopped by for a short visit.....her daughter (my cousin) dropped her off, but waited in the car in the driveway. Wouldnt even go in to see her grandmother. Wow!!!! Sure it's not pleasant....but can you compare a few moments of awkwardness to a life, 24/7 of this? I dont think so......I call it selfishness.....and this illness showed me the kind of people I am related to.
I'm so sorry for my bitterness ladies......I probably shouldnt bring that here.....but it is so hard.....and I know you all understand.....

Thanks again from the bottom of my heart...
Love, Carsam xo

About 4 months after my Mom went into the Alz. facility, she was sent to the psych ward at MCO (Medical College of Ohio) because of getting into a fight with another client. I later found out that almost all of the clients are sent there for a short time...Mom went for 1 week. I'll never forget the horrible feeling I had the first time I visited her there...she was sitting on the edge of her bed quietly playing her harmonica...tears streaming down her face. The lady in the room with her had removed all her clothes and was screaming. Even the nurses questioned why Mom was placed there. Although she was on antidepresant meds, we noticed a change in her.



Pam, this sounds so awful....how difficult that must have been. This is exactly the sort of situation we are looking at.....so very sad.

It's OK to express your feelings here, the more negative, the more you need to get them out. Don't ever feel guilty about how you feel. I agree that your relatives are doing the wrong thing, totally. You have every right to feel bitter. I just wish I had some helpful advice, but I am as perplexed as you are. Sorry you and your Mom and your Uncle have to go through all this ...

Love,

Martha

Thank you Martha....
It's just really good to have this place to come to, and all of you here. I dont know how to explain it, but in the midst of this "nightmarish" illness, there is a certain "peace" I find here......for sure it is the people here.....and the way everyone has of supporting each other. It's not like any other board I've been on....

Carsam xo