Alzheimer's Community

Alzheimer's disease was first diagnosed in 1906.

I'm sure, though, that information overload contributes to a lot of changes in the way people think and process things. All of the stimuli we're exposed to must surely stress our brains at times.

Hi, Carol, hope you're well. 1906? I'm not the least bit surprised, but I am curious where your information comes from. Do you have a link? I have always felt AD isn't new, as I generally believe that nothing is new (as with my own fibro). I'd love to read about this. Since I have not been able to complete a book in over a year, and I normally read five or more a week, maybe this will give me some incentive. Things are the same, actually worse, for me, and I'm beginning to think (and fear) that something more drastic may be needed to pull me up and out of this very dark hole.

Thanks for your info.

Joan

Hi, Joan. I'm very sorry that you're feeling so terrible, and getting worse. Have you seen your doctor recently? Is he/she trying anything new for you? It's really sad to see you in such a low frame of mind.

You may already know about these WebMD boards, but there is a Depression community that might be helpful to you, as well as a Fibromyalgia support group . Maybe it would help you to talk to other people who are suffering with similar things.

Here are a couple of links to information about the first diagnosis of Alzheimer's Disease:

http://wiki.answers.com/Q/When_was_Alzheimer%27s_disease_first_diagnosed

http://www.alzheimer.ca/english/index-timeline.htm

I hope something good will happen for you soon, so you can start feeling better. I know you haven't felt up to posting much here, but please let us know how you're doing, whenever you can.

Carol

Dear Carol, thanks for the input. I do have a doctor's appointment next Monday, and I also need to see my PCP. I wanted to let you know that the nursing home called about 8 PM tonight. Since I don't get there often, this was not a good call. I always expect bad news, but I'm pretty p'od that someone didn't call me before tonight. Mom's diet was changed around Easter, the reason being that eating was causing a cough, which I noticed on that visit, and I discussed it with the nurse later that week. Occupational therapy was called in, which I knew about. Mom has been having skin tears on her arms, and we have discussed sleeves several times. Dermasleeves were ordered, which she takes off and throws away, which is exactly what I knew would happen. When the nurse called tonight, she told me that Mom's diet has been changed again, ground up now because she is holding the food in her mouth. Now for the kicker: Mom has lost her bottom teeth. They have been missing for a week now. According to the nurse, she has been removing them for some time now, which no one has told me about, and they haven't called until tonight because they have been searching since last Tuesday. Of course, I am so upset over this, as Mom has always been so careful of her teeth, and so modest in her care of them, never wanting them out in anyone's presence. I advised the nurse that I do not want them replaced because I know new ones will cause her discomfort and possible infection. Carol, I cry buckets every day over Mom, and this is just horrific. The nurse who called is a wonderful lady, and I know Mom gets very good care, but I am really shaken by this. And both dear sisters have seen her twice since she lost her teeth, and neither even mentioned it to the staff.

I have been visiting the fibro website, but the suffering sometimes makes my own worse. I have not visited the depression website in depth, but I have been thinking about it.

Thanks for the info. I will keep you posted on things.

Have a good week.

Joan

Hi, Joan. I can see why you're so upset over your mother's teeth. I think that's something that happens way too often in nursing homes. I've heard that it's mostly patients with dementia who take other patients' teeth, but I don't know if that's really the case. I hope they'll turn up.

Do you know if your mother has noticed that her teeth are missing? Maybe at this point, it doesn't bother her so much. That would be a good news/bad news thing, I guess. It would be nice to know that she's not upset by it, but you hate to see someone who used to be so careful about her appearance not caring so much any more.

Will your mother wear long-sleeved clothes to help protect he arms, or does she just not want anything on them? My poor uncle used to get skin tears, too -- it must be hard to prevent them in people whose skin is so thin.

I'm glad you have a doctor's appointment next week, and hope it will help. Please let me know.

Take care of yourself.

Carol

Hi, Carol. I hope you're well. The unit coordinator finally called me Tuesday afternoon, and said she hadn't called because they were searching for Mom's teeth (for a week, mind you). I was able to talk with her lucidly and calmly, and she was reticent as she always is with me. I am very outspoken, and I have related to her some of Mom's and my history. By outspoken, I mean truthful and expecting reciprocity, which is very hard for many people. I was so upset Monday night after the news that it took some time for me to calm down and try to stuff some food into my mouth. And it's ironic, as this whole incident revolves around food, teeth, and illness--I know, I'm rambling now. Lisa, the coordinator, informed me that Mom does not miss her teeth, which tells me she has progressed much further into the disease. She also said that AD patients tend to remove and lose their teeth. She has not lost her upper plate yet, but that's the one which has always fit well and given her no problem. The fact that she doesn't realize they are gone just breaks my heart. I know what will happen to her facial structure now, and Lisa said we can hope that won't happen. Sometimes I wonder about her. She has this position because her sister-in-law owns the facility, her husband runs it, and it is a family business. I have always questioned her expertise as I'm sure she has no medical degree of any kind, but she does not take care of the patients, which is a good thing. Anyway, that's where we are now. I must force myself to see her if possible this weekend. I did speak with one of my best friends, who works as a nurse in the facility, regarding the candle. I asked if she is aware of much theft in the nursing home, and she said not really, so I'm still left wondering whether to put anything else in Mom's room. I have purchased some really nice things, but I'm not sure what I will do. Lisa said that Mom is "content," that she laughs and smiles, and this absolutely kills me, as the laughing, giggling, happy person is not someone I know. However, if she is content, and knowing that she does not miss her teeth, however awful it sounds, it does give me a little peace. I really worry that I'm going to hell for placing her. I guess everyone feels this way.

I hope you have a lovely weekend. It's so hot here, in the 90s, and I believe summer is finally here. I envy your being in Florida, I love it there, have family and friends there, but with our humidity last summer and heading that way this summer, I guess we'll abide in North Carolina for the time being.

Thank you for your caring.

Joan

Hi, Joan.

I can see why you're so upset about your mother's teeth disappearing but the good thing is that she's not upset by it -- that would make it so much harder for you.

How long has Lisa been doing what she's doing? I suppose that telling you that your mother's facial structure may not be affected was just a somewhat clumsy way of trying to make you feel better.

Do you think your mother would notice the things you have bought for her room? Maybe you could try one thing first and see if it disappears. I hope not, and that the missing candle was just a fluke.

Personality changes like the one your mother seems to have undergone -- smiling and laughing -- must be pretty common. My step-grandmother had Alzheimer's. She had always been sort of stern and extremely proper. Deep in the throes of Alzheimer's, she started swearing like a sailor and threw the f-word around all over the place. In my whole life, I had never heard her say so much as "damn".

It must be upsetting to have spent your life being mistreated by a miserable mother and now hear that she's apparently happy and fun-loving -- the mother you wish you had grown up with. It should make you feel a lot better about having placed her, though, because she doesn't hate it and she's not mad at you, and she seems to have settled in quite well. That's the best anyone could ever hope for in those circumstances.

If it's difficult for you to see her, don't force yourself to visit. She probably doesn't realize you've been there. I know that you feel you have to visit her occasionally, but maybe you don't need to go that often.

You aren't going to hell for placing your mother. You've done everything you possibly could for her, and it sounds like she's doing very well where she is. She may very well be happier than if she were still with you, just because the place is geared to people like her. When my aunt and I were talking to my uncle's case manager, she said that Alzheimer's patients almost always are happier and do better when in a memory-care facility than at home, once they get past the early stages of the disease.

I know it's been really hot there -- much worse than down here, for a change. Our weather actually hasn't been too bad for the past few days -- low 80s.

I've probably asked you this before, but where in North Carolina do you live? I loved living in Virginia and North Carolina is one of my favorite places, too. I have a sister-in-law just outside Raleigh and especially like visiting there in the Fall and Spring. There's nothing like that in Florida!

Carol

Hi, Carol. Thanks so much for your encouraging words. I need those so much and it's always wonderful to talk with you, and the few people on the other site. I am so isolated, and I "live in my head" which, if you understand that, is not a good thing. I miss the support and companionship of other females. My British "cousin" is so delightful, and we live countries apart, and I have a long-time friend, the nurse I told you about. There is a lot more to that story. I wish we could talk privately. Could we email or is that something you would prefer not to do?

We live 20 minutes from High Point and Winston-Salem, in Davidson County. Have you ever heard of Lexington barbeque? That would be our town. My hometown, for almost 60 years with a sojourn in High Point for 20 of those. And yes, North Carolina has it all from mountains to coast. It's beautiful.

I'll speak to you soon. Thanks again.

Joan

Hi Joan.

I know what you mean about your British "cousin". My best friend for the past 20 years is English, and we see each other so rarely. I'm hoping to make a trip to visit her later this year -- it's been several years since I saw her last. We talk on the phone every couple of weeks, but it's just not the same as being in the same room, having a Scotch and talking about everything in the world.

Although I don't "live in my head", I understand what you mean by that and why it's not a good thing. It must make life so much harder for you.

Is it your health that isolates you so much? Or is it that you're too depressed to get out much? There have been times in my life when I've tended to become hermit-like, but I think it's been more the nature of my personality than depression. I had to force myself to go out and do more. I didn't have the physical problems and depression that you have to deal with, though, and I'm sure it's not easy for you to get out and be with people.

I know of Lexington, although not Lexington barbecue. I have nieces who live in Thomasville and Sophia, so they must not be far from you. My husband and I have spent a lot of time in North Carolina -- we have friends and family sort of scattered throughout the state. My husband worked in Smithfield for several years before I met him, and when he was growing up, his family and several others would always rent houses in places like Nag's Head for a couple of weeks in the summer.

I would be happy to exchange emails, but I'm not sure how to give you my address without putting it on this site for the whole world to see. Maybe Byroney would have a suggestion.

I hope you have a good weekend, Joan.

Carol

Hi, Carol. I hope you had a lovely weekend. How funny that you have family in Thomasville. That's where I worked for l3 years. It takes 11 minutes to get there from home, and I know it well. I also have family there, lived in High Point for 20 years, 3l years ago, and I also know Sophia. Smithfield is familiar too as we used to go there for the state truck driving championships. Steve actually won overall in l996, and we got a free trip to Columbus, Ohio, 5 star hotel, the whole works. He came in in the top third in the nationals there. It was so much fun. Isn't it a small world. My maiden name was Beck, and one of my best friends is from Thomasville. I have not seen her in almost 24 years as she lost her mind in l987, left her 20 year marriage, three children and completely ruined her life. I've tried to track her down over the years, but that has been fruitless. As for my isolation, it is because I never know when I can get out of bed, so making plans is difficult, and I don't like to go out looking like a hag. Getting ready to go out takes hours, and people who can go and do lose interest really quickly when one has to keep cancelling or just saying no. I have rediscovered a dear friend recently. I am so excited as is she, and am so sad to find out that she is in worse shape than I. She will be 55 next month, and is now on disability, but we talked on the phone for four hours last night, so that makes two people I can actually talk on the phone with. Ain't that pitiful! I did find out through a family member who is related by marriage that Lassie, the dear sister, had rotator cuff surgery a couple of weeks ago, and from what I understand, she is not doing well. She is 69, and she has never really had to deal with much pain, so she may have some time to think about things. Mom is having no visitors at all now, which she doesn't even realize, and she is sleeping so much. She does smile at the staff, and I believe she is happy and content, which does help my frame of mind. If my body would just cooperate, I think I could get back to some semblence of life.

I'll chat with you soon. Have a wonderful, well week.

Joan

Hi, Joan-

My dad had a lumber company in Indiana -- I worked for him for quite a few years before he sold it -- and I remember what a big deal the furniture shows in High Point were. Unfortunately, I never got to go.

Is your husband a truck driver? What kinds of things were involved in the championships? That must have been a lot of fun to win a trip that included a 5-star hotel, and spend a few days feeling like a princess!

How sad about the friend that you can't find any more. Maybe it's just as well that you can't track her down -- it might be heartbreaking to find out what happened to her.

That's great that you've reconnected with another old friend, though! I guess that the fact that you both have such serious physical problems gives you sort of an extra (though unwelcome) common ground that other people don't fully understand. Is she able to get out and about it all? It would be wonderful if you could get together sometime.

I guess that rotator cuff surgery is difficult under the best of circumstances, and can take a long time to recover from. I hope Lassie will improve soon, though. Is she having physical therapy?

It's so easy to take for granted being able to just get up, get ready and go out. When I read about how difficult it is for you, it makes me sort of embarrassed that it's something I don't really appreciate. I'm so sorry that your life is controlled by pain. I guess that people who don't have to deal with it all day, every day, have no clue how much it affects people's lives.

I'm really thrilled to hear that you're finally feeling better about your mother! It does sound like she is doing great and is happy in her world now. When someone has Alzheimer's, that's the best thing you could possibly wish for.

You and Sue (rascal54) should talk to each other. You have so much in common -- very difficult histories with your mothers, serious chronic pain, approximately our age.

I think you said you had a doctor's appointment today -- how did that go?

And I think you were talking about making an appointment with your pain management doctor. How often do you go there? Is it a pretty regular schedule, or just when you feel that you need to go? I hope that the next time you do go, he/she is able to offer something that will really make a difference for you.

I hope you have a good week, too.

Carol

I've have tried twice tonight to post, have written two long posts, the system threw me out, and I don't have the energy to try again right now. Things are so much worse, not with Mom, but with our granddaughter, and I will have to try again when I feel up to it. I so enjoyed your message, just keep us in your thoughts. I don't know what is going to happen next, but I am afraid I may be headed for a real breakdown if things continue to go down hill. Just please keep us in your thoughts and prayers. Just when you think things can't get worse, they do. I hope you're well. I will try to post soon.

Joan

Joan, I've been wondering how you've been.

I don't know what the situation is with your granddaughter, but it sounds pretty bad, and I'm so sorry. It's hard to know what to say, but I hope there will be some improvement soon. You seem so anguished.

You'll definitely be in my thoughts and prayers. I hope you can post again soon.

Take care.
Carol

PS - about the disappearing posts -- I know how incredibly frustrating that is. It's happened to me so many times that I started copying my posts as I go. That way if it doesn't show up, I can just paste it and try again. The trick is to remember to do that -- I don't always.

Hi, Carol. These last two weeks, it has seemed things couldn't get worse, but of course they always can. Our grandgirl has been here for two weeks as of yesterday. Her dad, my son (I'm so proud- NOT), informed us two weeks ago when he brought her to us that the woman with whom he lives no longer wants her in that household because she is not like the other four perfect children. Carol, the whole situation is so sordid, so embarassing, and so uncalled-for, and our girl is suffering. He has not moved out of this house, school starts August 25th, our home is not in the school district where she wants to go, and everyone with whom we have spoken thinks he is crazy, and of course we agree. Carol, my husband and I are this child's only stable, safe, loving people with whom she has lived for her entire 11-1/2 years. I can't go into everything here of course, it would take too long, and I am just trying to get through each day, trying to help this child through another rejection, and hoping this will not further damage her. My son is 40 years old, he was not raised to live this way, and we are just stuck. So, you see where I am right now. Just pray for us, keep up in your thoughts, and thank you for being there.

I'll post when I can. Hope you and yours are well.

Joan