Dementia Support Group

Hi, I am Amalie. I have a family history but no symptoms or diagnosis at this time. Just looking for imput and ideas on how others are approaching and seeing positive results on successes. Is this a good place for family members to go or is there another group for the family/caregivers?

Thanks - Amalie

Hi Amalie, I think this is the only group specifically for dementia (and MCI) though there is also a group for Alzheimer's http://www.mdjunction.com/alzheimers-disease

and a group for caregivers http://www.mdjunction.com/caregivers (they have family with a whole range of medical conditions though, not just dementia issues).

So if you are looking specifically for ideas on what to do to keep your brain active and healthy, here or the Alzheimer's board are probably the best places.

I know some people here use http://www.lumosity.com/ and their brain training games. I have used it some, but not past the free part. It is really interesting because they don't just have things to do, they have the science behind the games and what the task is designed to help with. Fascinating stuff really.

I don't know as much about the diet and exercise parts (though I know they are important). My Grandparents just weren't going to do that much of those, we were doing well to keep them eating regular meals (not counting ice cream as a meal) and Grandpa had already exercised regularly for years, Grandma didn't do much, but she was also legally blind and it tended to be dangerous to have her moving around too much.

Thank you, Mary! I posted a note but I do not seem to see it! I will check out the other groups and see if they have some input. Are you the group leader for several groups?

I am the leader on this one and just a normal member on some of the others (well I am a leader of the NDPH group too, but that is a headache condition). I am not on the alzheimer's and caregiver's groups nearly as much these days because my Grandparents passed away a few years ago so I am not actively taking care of anyone with dementia right now or dealing with it myself (I am only 32, not that other people don't sometimes run into it awfully young).

They are great groups though, I think you will enjoy them. Both of them are larger than this one so there are more active people to talk to.

Hello,

I'm new to this site and this is the first time I'm reaching out to others, as I am trying to deal with my mother who has dementia. My mother is total denial of her problems dealing with life and her personal relations. It pretty much started about 3 years ago after she had a major car accident, where they had to use the 'jaws of life' to remove her from her car. She was in a trauma unit for a few days then transferred to regular med floor for a few more days and then eventually she had to go to a rehab facility to recover for about 2 weeks. My husband and I think that the accident, shook her brain, similar to shaken baby syndrome. Within a few months of the accident on the fourth of July, she left home going to my brother's home and no one saw her until the next day, July 5, about 2 pm. She was lost, all that time. When we tried to call her on her cell phone she would put it down, and she refused to pull over and tell us where she was, so that we could come and meet her. She kept insisting she was ok... When she did come home she said she went to a meeting in a town about 300 miles away..?? What meeting, she does not work....and on the fourth of July? No way.

Anyways that was 3 years ago and many, many stories ago, that would turn your hairs gray. Now, I have moved my mom and dad, who has Parkinson syndrome, around the corner from me. Last week I went to a dr.'s appointment with her. Oh, she was angry, defiant, and mean at the appointment and particularly to me. She refuses to take ANY medicine.... When I left her house last night, I knew I had to reach out....so here I am. I need to share with others who may be going thru some of what I am. I look forward to more sharing. As always, Lucky

So sorry to hear that you are going through this. I know my Grandma went through this stage, but she and Grandpa hid it from the whole family for as long as they could (and we were all several states away) so we don't even know all of what happened. Their car had several dents in it and my Grandma had a "missing" episode too (but without a cell phone because this was a long time ago) before a friend of theirs basically turned them in to the rest of the family and let us know how things really were. Who knows what else happened that even that friend didn't know about.

I don't know how my Grandma reacted at first (when it was just her and Grandpa), she may have been angry and defiant (though her personality tended more toward anxiety than anger and that is what we saw more often when she came to live by us). She could be quite mean to Grandpa though when she was in a mood, but I guess that comes with the territory of being married for 60 something years (they were usually really sweet together, but everyone has their moments).

Getting around the no meds thing when she won't take anything is really tough. My Grandparents were pretty easy about that because Grandpa was always taking heart meds and various supplements and getting various supplements (calcium and vitamins mostly) and such for Grandma so it was easy to add in another pill and just call it the memory pill, along with the one for bones and the vitamin and whatever else she needed at the time. I don't know if any of the dementia meds can be put into food or not but it is worth asking about (sometime when she is not listening of course, maybe even by phone if you can't do it in person).

You are in a tough stage, where there are clear problems, but she won't acknowledge that there are any so you are just trying to keep her as safe as you can until she gets to the point where she is either willing to face it, or just can't remember enough to fight you about it. I am glad that you have her and your Dad closer to you, it adds tons of drama (unfortunately) but at least you will be able to be sure that he is alright and try to keep tabs on how she is doing overall (even if she doesn't like it).

Hi, My name is Mike. I came across your forum while I was looking for some MCI information. Within the past 3-4 months I've noticed a considerable increase in memory issues. I forget from one second to the next what I was going to do. I've been leaving the stove turned on. I forget I put my dogs outside or think I left them out and then find them inside and don't know when I let them in. I'm having trouble pushing words out sometimes. Following a simple recipe stresses me out as I have to keep reading and re-reading it to make sure I'm doing it correctly or did I miss putting something in it. There have been times when going to the store and I had to look down to make sure I got dressed that morning as I can't recall doing it. The other day I almost ran a light as I had trouble grasping what to do at a yellow light. Luckily I got stopped in time, but not before almost making my sister stroke out. I can't sleep anymore. I lay awake until sometimes 5 or 6 am and then cat nap for a few hours and then get up.

I've spoke to a couple of my doctors about it and one wants to do a CT of my brain to rule out any issues there since I've been getting frequent pains in my head, predominately the left side. My other doctor said I can take a mini-test to see where that goes and possibly a neurologist if needed. Of course all this is predicated on insurance and a way to pay for it all. Mom passed away from Alzheimer's, but I've never worried about that at my age,(50) even though sometimes it can be hereditary. I decided to do some digging and was surprised at the symptoms of MCI and what I've been experiencing. Currently I'm going through an appeal process for Social Security Disability, not related to this, but for my spine.

I'm sure there are other things I could list that is happening right now, but darned if I can remember them. I'm keeping a journal for my SSD appeal, maybe I need to begin one for this too.

Hi and welcome, I does sound like maybe you need to start keeping another notebook (or maybe just another section in your current notebook). I don't know if you are taking any meds for the other condition that could be contributing, but your doctors probably would have mentioned it if they thought that was the problem.

I think getting the CT scan is a good idea, especially since you are also having head pain (I have chronic headache and you would get some kind of brain imaging for that too). The mini-test is quick and easy for them to give you (may not be easy for you to do) and gives them a way to evaluate where you are right now. Depending on what they find a neurologist may be the next step or they may be able to help you themselves.

It sounds like your doctors are on the right track though.

The only medicine I have been on for close to a year now is Meloxicam. Been taking that for six or seven yrs now. I've been on a slew of pain killers and muscle relaxants over the years. I almost need to post to-do messages around the house so I don't forget basic tasks. I fixed dinner just now and went back in the kitchen and was reaching over the skillet I had used and realized it was still hot. Then it occurred to me I left the stove on again. It was on real low so I don't know if the grease would have caught fire, but things like that keep happening.

LOL....as I was typing this out, I was asking myself if I shut off the rotisserie oven that I had an extra casserole in. No I didn't. It was in the back room humming away. Even though none of this is funny, you often wonder what am I going to forget next. I take care of my sister as she has severe RA and I don't want to tell her about me as I know she will worry herself sick over me and that won't help her any. Some days it doesn't seem that bad and other days I don't know what I'm doing or what I was going to do or try to find words to make a sentence.

A medicine you have been taking that long shouldn't be causing changes now unless the dose changed or something, so I guess that probably isn't it. That is kinda scary when you forget to turn off things that are cooking a lot. As my Grandparents had more and more trouble with remembering things they started using the microwave more and the stove less. Microwave food is good since even if you do forget it nothing is in danger of catching fire.

It is hard to know when to tell family members, especially ones that have their own health problems and that you know are going to get really stressed. Some people would rather have all the facts up front as soon as possible even though it seems to stress them out, they just need as much time as possible to get used to it and get back to thinking rationally. Other people tend to prefer blissful ignorance about bad things and want to not know until they absolutely have to. I have no idea which type your sister is or whether she is somewhere in the middle.

It would also help if you had a firm diagnosis adn a prognosis (which the doctors may or may not be able to give you, I don't know). It might give you some help in figuring out what to tell her and when.