Dementia Support Group

This past weekend my brothers and I moved my 87-year old father into assisted living. It has been an incredibly rough road getting this far, as I'm sure many here can understand.

My dad has never been formally evaluated for dementia, although it's very clear that he has it. Right now his biggest symptoms are inappropriate rage and inability to form full sentences. Also some paranoia.

Just wanted to introduce myself. I'm pretty wiped out emotionally right now. I'm also sad because my funny and bright father seems to be completely gone.

Post edited by: imdreaming, at: 06/07/2010 08:10 AM

Hi and welcome. It is really hard to go through big changes like moving a family member anywhere, especially when they don't understand what is going on. For now I would recommend that you give yourself a little time to get back together emotionally before you do anything else, cry, sleep, eat, exercise, write poetry, or whatever it is you do to let yourself recharge.

When you are feeling a bit better and ready to deal with things again, you may want to look into having your Dad formally evaluated since he might benefit from medication, not just for the cognitive parts (memory, thinking, finishing sentences) but also for the mood and sometimes behavior symptoms that often go along with it. My Grandma had paranoia and hallucinations as well as depression with her dementia and medication was a really wonderful thing that kept her from being constantly terrified or sad. He may need to see a psychiatrist to get these medications, and if you can find one who has experience working with elderly patients that is even better, but for my family at least it was a really wonderful thing. She still had trouble processing, but she was closer to herself.

I am new here, and having a difficult time. I have a vascular dementia from cadasil disease, and am seeing a psychiatrist, but haven't gotten much help. I tried taking Numenda and Arecept, but ended up in the E.R. because of the severe headaches each of them caused me to have. My emotions are all over the place. I suggested and am taking Strattera, and that helps me a lot. At least the headaches and brain fog I normally wake up with slowly dissapates with Strattera. Does anyone have any suggestions what else might work. I am tired of being so angry all the time. (Well, not all the time. Sometimes a little anger is fun.)

But my anger eventually gets me banned from cites like this, and I do not want to get kicked out of here...I am starting to like it here.

Hi and welcome, I am sorry to hear that you don't do well with Namenda or Aricept, but anything with side effects that bad isn't worth it. It is good that the Strattera helps with the brain fog and all.

As far as mood instability and bursts of anger or moodiness, for some people an antidepressant or a mood stabilizer might help, but I don't know in your case if it would end up bringing the brain fog or the headaches back (good questions for the psychiatrist). Both of those medication classes tend to be sedating which can be a good thing for people prone to bursts of anger (it is hard to be a bit sleepy and furious at the same time) but it does make it hard to think clearly.

If you haven't already you may want to try experimenting with things like avioding stimulants (coffee, caffeinated drinks, even lots of sugar at once, ect) and see if it makes any difference. I am not familiar with cadasil specifically, but sometimes after dementia starts things in the brain become more sensitive to stimulants and it might be making you more tense than you suspect.

I hope some of this is helpful, we would like you to be able to stay here too.

Post edited by: MaryR, at: 06/19/2010 03:16 PM

thanks Mary. I see my psychiatrist in early July, and I'll talk to him, as will my wife who I like to accompany me to that appointment. I find some of her lists (she makes lists) of topics to talk to him about me, she is kind enough to not specifically target my anger, but I know what lies behind her concerns.

I never did learn how much this site is monitored, is that your job here...and do we always have to be super positive and upbeat, and encouraging to others, or can we just be as honest as possible. The sites I get kicked off of always emphasized having and giving hope to others; but that's not me. I am usually very direct. My father was a prominent physician, a neurologist at the Mayo Clinic; he was also disabled with RA, and my attitudes often come from him, from what he had to say regarding disease, death, etc. And I wear his opinions proudly. I remember asking a nun to leave his hospital room after one of her pious comments.

I do monitor to try to keep things in the terms and conditions (here if you want a refresher http://www.mdjunction.com/tos) as well as the administrators Roy and Alon, but it is somewhat subjective in exactly what "hateful" speech is. I don't think that everyone has to try to be constantly upbeat and happy all the time, the problems we face aren't generally happy upbeat things. But just like I would not want people to insist that you try to paint a fake smiley face on all the time, I would not want you or someone who tends to be more negative to make it their goal to go around bursting the more positively oriented people's bubbles.

It is supposed to be about helping each other as best we can, generally that means not trying to tell someone else how they should feel about things, but letting them feel the way they do and sharing any experiences that we have had that might be helpful. At least that is my take on it. I hope that clarifies things a little.

thanks, I agree with what you wrote, and ZI appreciate your responding to my questions. I posted on the Cadasil site recently and what I wrote wasn't too positive, but it was my understanding of what cadasil patients face. If I don't get negative feedback from that post, I think I may be all right here. On other forums, I would get warned, then kicked off for that sort of post

I do have to say that I only lead the dementia group (and co lead the NDPH one, but that is a chronic headache diagnosis and I think I am the only person who belongs to both groups), I don't know who leads the cadasil group (if anyone, some groups don't have leaders).

The main thing is to try to help out whoever the person posting for support is and tailor your answer to what their needs are. If you ever want to go back and change a post (adding or subtracting, or if you are like me, fixing your spelling) you can always edit.

Cadasil is a progressive fatal disease; and someone asked for a person with cadasil to advise for what his morther was going through, I thought he wanted to know what was going to happen to her.... I said she was going to disintegrate in a progressive fashion, that she was going to face a series of brain blood vessel leaks...that in severe cases doctors could not find areas of the brain that were not damaged.

It was either saying that or lying,,,which is better: the truth or fiction? To me, facing up to a grim future is comforting, I have no doubts, nothing to hope for, nothing to cling to. There are no medications to take, etc. No sense in supporting any sort of research. All of that disappears and many people find it a terrible thing for me to say, but for me it brings a strange sort of peace and stillness. I do not have to worry about new symptoms, when they occur often they are amusing, or silly. I adjust as best I can, and move on because there is nothing else I can do except wait for the next symptom. It is kind of like waiting for what tricks an evil creator has in store for me. If it upsets others, well, I know they are not standing in my shoes. If you have ever read "My brother's keeper" about a very talented Family trying to save a son with ALS, at the end of the books, the family is in frenzied tatters at their failure to find a cure while the ALS brother is O.K., living in a peaceful type of serenity, an inch or two from dying.

I talked often with my father who had a severe case of RA; and he wanted to die; and I was there when he died. It was a magical moment...so peaceful. so easy. And he was suffering no more. So I cried because he was lost to me, then got over it. In many ways his life was tragic, but to his children, it wasn't always tragic. He taught us so much.

I have no problem facing up to the truth of the diagnosis and probable disease progression (particularly if it is one of those things that can be definitively diagnosed). I do think that not all of your philosophical outlook necessarily follows from that, so there is room for others to have less negative views of life, even if they are fully aware of what the diagnosis means as well. They too have their own way of finding serenity as they come to face dying. I haven't heard of "My brother's keeper" before, but I can imagine what it would be like for those constantly searching for a cure and not finding it. I am glad that your Dad was able to leave you the legacy he did, I am sure it has shaped your life in a lot of ways.

I did go read the other post and I am not so sure that the person isn't aware of the progression that will eventually happen. He seems more concerned to me with how to help with his Mom's mental health now, especially as she is surrounded by those worse off than she is and has very limited socialization. It may be that moving would not help her and it is just the process she has to go through of facing the disease that she has, but it is also entirely possible that she is lonely and bored and misses having friends. The day may (likely) come when she doesn't really notice about any of these things, but for now she seems to be very aware of them so it makes sense to me to try to put her someplace where she will be happier while she is aware enough to notice. But that is the perspective of someone who used to work in the mental health field in a nursing home, so I tend to be very aware of that sort of thing.