Alzheimer's Disease Support Group

Hello Group:

Over the last few years I have noticed a change in my Mom. Mostly with word recall but also lately I have noticed confusion (voice mail is just not happening - I have to make those phone calls) and what almost seems like regression. She has never been the strong and independent type but seems more dependent and less self-assured.

She has had all the radiological testing done. Tomorrow she has a cognitive test that involves puzzles, etc. I am really worried that what they are going to find is Alzheimers.

I am guessing that if they think this is the case they will ask her to come in to discuss the diagnosis, in which case she will ask me to come too. What do I say to her to ease this pain if this is the diagnosis? What can I say to help her be less afraid?

If anyone has any extra information or can help in anyway, I would sure appreciate hearing from you.

Thanks so much,

Redwood

Hello Redwood. "You are not alone" has got to be the most reassuring thing you can say to a person with cognitive problems, regardless of what the exact diagnosis is. Assuring your relative that you will be right there with them to help when they need it is a huge comfort. Frankly, I never found much to ease the pain other than a comforting arm and an assurance that I will be there to help them through. In other words, it is more demeanor than it is words. Don't make the mistake of thinking that someone with cognitive problems will not pick up on emotional responses. They seem even more attuned than before. Try to remain calm and reassuring.

You will find that all our electronic gadgets make the world a nightmare for people with brain disfunctions. It makes them feel frustrated, incompetent and stupid. Simplify, simplify, simplify. Our inclination is usually to add something else to make someone's life easier and more manageable. The kind thing is to remove a lot of frustrations. If we really look at it, all those gadgets might make our life easier if our relative could manage them, but they can't. Find a simpler telephone with large keys and as few of the extra functions, bells and whistles as you can get. You will make their life easier, not necessarily yours.

We'd like to hear how you progress and what you develop as coping mechanisms, and we're glad to answer any questions we can. ANW

Hello Redwood. Welcome to our group. I'm sorry to hear that your mom is having problems that may turn out to be Alzheimer's. The best thing you can do for her at this point is just be there for her and let her know that you will always be there for her. The neurologist that diagnosed my husband told me that getting the diagnoses of AD was not the end of the world that there are a lot of worse things out there. At the time I was upset with him for saying that but I realize that he is right. At least there is no physical pain with AD and with the use of medications the progression of the disease can be slowed down in most cases. It is important to remember that someone with AD can still enjoy life and still have feelings and can feel love and love in return. Just let her know that her life still has value and that you will both get through this together. Keep in touch, we are here any time you need/want to talk.............LYW

Thank you so much.

My intuition was to tell her that I would be there and make sure everything is ok for her, but this is new territory for me and I just had to talk to those who have been there. My mom has always leaned on me and looked to me for support, so I think she will be confident that I will be there for her.

That makes so much sense about the electronic gadgets - I never thought of it! I have been trying to get her to make a Facebook because I thought she would enjoy the social connection and she has been very resistant. Maybe the technology is just too intimidating.

This is so scary...

Thanks for your help,

Redwood

Mom had her testing done yesterday. The results are being read next Friday and I am going with her.

I asked her how it went and she said, "Good". Then proceeded to tell me how she got confused and then was anxious. I asked her if she was nervous about the results and she said, "No". She had a hard time getting the words out but it seems like what she was saying was that they noted some anxiety (when she can't figure something out - like voice mail - she gets really anxious) and they might give her something for that. She also said something about depression. So I am thinking that she thinks that the results they will find from the testing are anxiety and depression; and that they are they cause of her memory and word recall problems.

It seems to me more likely that if this is Alzheimer's that the confusion could be causing the anxiety instead of the other way around.

They have checked absolutely everything else, and I can't think of any other reason she could be having these problems... I guess I need to be prepared.

Any words of experience are greatly appreciate!

Redwood

Hello Redwood!My father-in-law thinks the same way.If a doctor asks him how he feels the answer is always "fine".Does he hurt anywhere-"no".If the family asks him the same questions he says he hurts all over and feels rotten. I think maybe it's his way of dealing with this disease.We have told him he has Alzheimers but I don't think he believes us.All I can say is tell your mom you love her and will be there for her always.It may help her understand what's going on. Hugs, Birdlover

Hello Redwood. At this point, try your best to not worry and fret about this. We can spend a lot of time worrying about things that never come to pass or if they do are not as bad as what we worried they would be. If we are always ever looking into the future, we might miss out on the present. It will drive you crazy if you keep looking at all the potential problems. We can't handle AD as a whole package all at once, that is why it is so important to just take it one day at a time, even one moment at a time. Trust the doctors to do their part and just be there for your mom and let her know that you will be with her through it all. I wish the best............LYW

Thanks LYW - it's actually not my style to worry about things I don't know are happening; there has been no official diagnosis yet. I do find it comforting to be armed with information in the eventuality that this is what we are dealing with.

Thanks birdlover for your experience - that is very helpful.

Redwood