Hi All,

I need some unbiased opinions please.

I know that I seem to be slipping a little over the last month or. Losing little bits and pieces of me. Forgetting conversations in which I agree to do certain things or be places. Misunderstanding directions how to do things, outcome of conversations, etc. I actually find myself turning in circles, wringing my hands, not knowing what I am supposed to do now or next. I can't decide between the options.

I don't know if it is dementia, depression, apathy or all. I keep thinking my job now is just to accept and do what I can with what is out there for me now, be it meds or therapy just trying to screw my head back on straight. But, I am so sad and unhappy with several of my personal relationships.

I am struggling with my best friend that doesn't seem to remember that I have this disease and is not understanding my slip-ups, disorganization, and forgetfulness. We play/work for a Craft Antiques Mall. They are opening a 2nd store and have asked her to oversee the 1st store and me the 2nd (opening in next month or so). Part time, 2/3 days week. This is something we dreamed about doing for years we have background and experience. We have several/many projects we are working on together for the stores.

I had been OK mentally enough to do so. But now.... I am concerned. I am losing these bits and pieces of my mind. Forgetting stuff etc., asking questions of her which she is interpreting as me doubting her ability. I am just trying to understand what she is doing. She gets sharp, angry, and frustrated with me. I think she sees my current list of failures as laziness, putting the work on her but I share the glory etc. Again, I don't know if it is increasing dementia, depression, or apathy.

The sadness I feel is overwhelming. So two things here. Is anyone else experiencing this loss of friends & families ability to understand? Did you give up on them if they could not adapt and help you live your life? Thoughts and discussion hopefully will help me decide do I try and stay with this thing I have wanted to do. The owner of the shops only knows I have medical issues that include memory issues. My dream of working in antique shop. Should I give it up, friend included and take my toys and go play with someone else someplace else. How does one go from being a 10 to a 3.5 on a good day? How sad it all is.

I can't take the heartache this is causing me. Sorry for the long posting but Thanks for listening.

Lynn

Lynn

I relate to what you are saying. My daughter who is to be my "care taker" is in denial.

So I have decided when she takes me to Dr's appts., I (& the doc) force her to converse with me. This way she hears what I hear and has an explanation of why....I'll let you know how it works out. If I remember.....

I "mourned" my job and my life. They were who I WAS....now, I'm past the loss. I too was "dropped" by a best friend who I've known since I was 13! That hurts, I know. Been there, done that.

As far as work...you are the only person who can determine when it's time to quit. Frankly, when I started to realize how much work it was to "cover up" my "forgetting" and in addition, I feared the monetary loss in a business I helped to build, well, I think you can understand from there.

I guess it's like a death. You are in shock, then you're in denial and sometime later or before your cry......you cry like you never have before, because you are mourning who you are and what you've become.

Try to keep your chin up. I "think" we all have gone or going thru this too.

M

Lynn, your friend may just be in denial. Heck, most doctors are in denial, when it comes to early onset dementia.

How to say this . . . I miss the days, when people around me could be in denial. No one is in denial regarding my dementia now, because it's obvious now. I can't converse normally anymore, and I can't help my blank look when asked to remember something.

If this friend is worth the risk, you might ask her something about what you've told her. Just get the ball rolling, and have what I'd call a follow-up talk to your dementia disclosure. Just a thought, feel free to ignore me.

Oh, Lynn, how sad.

It is hard to remember that our loved ones are sick, in the early stages. It can be frustrating for friends and family.

But that doesn't mean we all give up on our loved ones -- or that you should give up on us. It just means we have to learn, and adjust -- on both sides. It takes communication, it takes education.

Are you close enough to your friend to show her your post?

Or perhaps you could ask her to come to the Caregiver forum, to ask us what AD is like from our perspective. We can also point her to educational materials that will help her understand.


Alan, for many of us, it's not a matter of being in denial, it's a matter of not knowing from minute to minute when you will be your "old" self versus when you will be your "new" self. And your "new" self keeps changing, and that can be hard for us to keep up with.

I knew there was something dreadfully wrong with my love, I fought to get doctors to figure out what was going on. He was diagnosed four years ago, heaven only knows I've read everything I can lay my hands on, intellectually I understand the illness, the progression, the symptoms that may develop ... and it's still a sickening shock when he has a problem he hasn't had before.

He has good days, I get lulled into the habit of good days. There is still so much left of the "old" him, that I don't always remember how much he has lost. And that's now, four years post-diagnosis.

I accepted the diagnosis -- I have never been in denial. I know what can happen down the road. What I don't know is how my husband will be when he gets up in a few minutes.

Hi Everyone & Thanks,

Your thoughts have been helpful. It is just so hurtful when people "in the know" about out disabilities hold us to the pre-AD days. Like you said Alan, the blank stare when you don't remember, or you remember it wrong. It continues to create the self doubts and loss of self esteem no matter how much self talk you give yourself. Perhaps I have blown it all out of context. It really does not matter, because it is how I feel. Sad!

But I can only hope it will pass and I will deal with it in a constructive manner. Yes JAB, I think I will talk with her and tell her about my fears that I am losing some ground. Ask for her help, understanding, and most of all compassion. I need a "warm fuzzy" from her.

I won't tell her how she has hurt me as she will not see it that way. I know her very well. She is a wonderful person, but just one of those folks that are very critical of themselves and others. She always needs to be right.

I think we forget sometimes to tell people where we are and what we need. Since we look normal..... Well you guys know. If my plan does not work then I think I will need to distance myself from her a little since she will be what I consider to be a toxic person. I can't afford that in my life these days as I am just not able to filter the good from the bad.

Lynn

quote:

Alan, for many of us, it's not a matter of being in denial, it's a matter of not knowing from minute to minute when you will be your "old" self versus when you will be your "new" self. And your "new" self keeps changing, and that can be hard for us to keep up with.

That's a problem for me, too. I'm aware that I'm not always aware of how I'm coming across, but I can see reactions in conversation partners that tell me I'm not doing so well.



{quote}I think we forget sometimes to tell people where we are and what we need. Since we look normal..... Well you guys know.{/quote}

You mean, we might try real hard to look normal, then get mad when someone doesn't remember to adjust to our dementia? No, that couldn't be it . . . could it?



So, maybe I want people to act normally around me, but then get I get mad at them, thinking they're in denial. That's interesting, and I'll bet it's going on right now and I don't know where.

quote:

Originally posted by Alan in Colorado:

So, maybe I want people to act normally around me, but then get I get mad at them, thinking they're in denial. That's interesting, and I'll bet it's going on right now and I don't know where.

Humm, I guess that we expect them to be flexible and for them to expect the unexpected from us. We (with AD) want to go on with our life as best we can and have everyone else adjust to us, lest it hurt our feelings?????

Interesting to think about Alan. As usual you make me ponder.

Lynn

Hi to All,

Lynn, I feel your pain! I know about loosing my best friend (she just didn't believe it) and an 8 year relationship (he thought if I'd just fight it more it wouldn't be so bad or don't give in to it or don't give up).

I hope you can speak with your friend openly and honestly and tell her who you feel and let her to the same. Remember, you need to hear her too!

My sister often reminds me that on some days I want to be treated as "normal" while other days I want people to read my mind and know exactly what I need!

This alzheimer's throws us all!

JAB reminds me what it's like from the outside in! We (people with AD/dementia) tend to become self absorbed with our problems! And, we do change (as our minds do) the way we see, feel, perceive things.

We have good days and bad days and very mixed up days. It's hard for our care givers to know what going on inside us because we don't always know what it going on inside us.

Each day, sometimes each hour, can be different. And as for our emotions, well, their just up and down!

Hang in there. You are NOT alone.

My best friend lives 1200 miles away and had seen me mostly on good days until I went to stay with her for 3 weeks. She has an 83 year old mother in late stage dementia so you would think she would have an idea what it is like, but she doesn't. While I was there she would say things like you just need to go out and do more things and you'll be fine. I think you've just given up, you need to be more positive (like there is nothing wrong with me except I don't think positive).

Then she came to visit me for my birthday and I was doing very good. I let her read a letter I emailed to my son. In it I talked about how some people see me on good days and think there is nothing wrong with me. How they don't see the bad days or how much medication I take to slow things down enough so I can still have good days.

After she read it, she said you know I think I've (meaning her) been in denial. I know after your visit there is a problem, but I just keep thinking I don't want you to have this so in my mind you don't. See realized it wasn't me making the problem more than it is, it was her not wanting me to have it.

quote:

he thought if I'd just fight it more it wouldn't be so bad or don't give in to it or don't give up

[quote]she would say things like you just need to go out and do more things and you'll be fine. I think you've just given up, you need to be more positive (like there is nothing wrong with me except I don't think positive).]


Back when I was a psychotherapist, sometimes I would see people who's problem was how they looked at the world. I.e., their central problem was their interpretation of events, not so much the events themselves.

The above quoted advice could conceivably fit those people. Although, anybody could feel put down, and condescended to, by those remarks.

Here's a fantasy: We tell our friends and loved ones that we have a brain disease. It only gets worse. Even if a drug makes us look better, it isn't by much, and behind the scenes the disease is still at work, killing our neurons. It will only get worse, destroying our brain until it kills us.

And then, grab them by the ears and scream into their faces, "Now tell me how positive you'd feel????" (Not recommended, but a fine fantasy.)

There are times when I do feel positive, as I'll bet there are for all of us. But, c'mon, we're understandably down sometimes.

My mother and husband went with me when I went in to get diagnosed. When I came out and my husband and I told my mother the doctor said I had Alzheimers she said not you don't you probably just have brain cancer. She thought that was a better thing to have.

Hey Lynn,

How are you doin?

Just checking in.

I'm holding my own. But I hate to be a man that complains. I have wonderfull wife and fammily.
I did party in the 70,s and 80,s. But I Turned around and came to follow ChrIst after a background of Catholisism. I play guitar in my my church on the Worshipm team.

Hello, John! It's good to have you finally here on the board. You have come to the right place. All here are struggling with our brains and our new lives. We come from different backgrounds but we are bonded by our brains.

We are people who will walk with you step by step as you go along this journey. We are your new cyber-family and cyber-friends. We are here for each other.

Whenever you have a question, you can start a new thread by clicking on "Start a New Discussion" on the purple box on top. Keep coming back, John. You are not alone.

Iris L.

quote:

I'm holding my own. But I hate to be a man that complains. I have wonderfull wife and fammily.
I did party in the 70,s and 80,s. But I Turned around and came to follow ChrIst after a background of Catholisism. I play guitar in my my church on the Worshipm team.

John, welcome to the forum! I'll bet you've been reading some for a while, before taking the big step of joining in. It's what I did, and I think most of us.

What kind of guitar(s) you got? My current ones are a Seagull acoustic, a classical that I can't remember the brand at the moment, and a Fender Stratocaster. I just have a Roland practice amp, nothing to deafen the neighbors.

Hello All,

I was out of town for a few days. During the day, I actually was with the friend that I was concerned about losing. Interesting, I think the problem was insecurities on her side more than it was about about me and my diagnosis.

I am very outgoing, friendly and talkative with anyone/everyone. She has a very dry sense of humor, which some people don't understand and/or feel uncomfortable with at times.

I make friends easily and people seem to relate to and remember me more so than her. This even though she and I are almost joined at the hip, together much of the time.

I won't go into details but we seem to have overcome whatever was the issue. All seems to be back to normal.

So, life is good again.

Thanks Guys for being here, listening, and sharing the comforting words.

Lynn

Lynn, I'm happy to hear that you and your friend are friends again.

I wanted to post earlier because I also feel that I'm losing a close friend. But I just could not, because my emotions are too raw at this time. But I feel encouraged when I read about you and your friend connecting again.

Iris L.

Hello Iris.

I have copied this from one of the other topics on this board. The one on intimacy. I included it in an email to my friend. She is out of town for a week so I will not know the result for a while but I will let you know. Good luck with your friend.

Norma,

This is something from one of my message boards. It might help to explain some of my communication problems. I think that some of these type issues have been the cause of our recent problems. I hope this will help you to understand that I don't do these things on purpose. I really don't remember some things and have problems expressing myself sometimes. I know it must be difficult for you to deal with this, but this is the way I am now. It is worse when I am tired I know. I know it frustrates the hell out of you but I hope you can be patient. You should see how frustrating and painful it is from my side of the conversation. Losing little bits and pieces of my self. I always try to remember your sometimes harsh reactions are not meant to hurt as you are not always aware that the illness is talking out of control and not me. I try very hard to concentrate in order to stay focused, but it does not always work. So here it is.

*Quote* Here is my own story of how cognitive issues interfered with my marriage. I was married for only five years. Before we married, I told my husband that I had a lot of trouble with my memory. After a short time our marriage ran into trouble. The ultimate issue became a loss of trust which eventually affected all areas of our lives, including intimacy.

Why was trust impaired? Communication was damaged. My husband came to believe I was not sincere because of my communication. Because of my memory lapses, my conversation was not reliable. To put it bluntly, he believed I lied to him. Since I was unaware of the full extent of my cognitive problem, I was unable to correct his belief. Eventually we divorced.

What I have learned, primarily from reading the Caregiver boards and from my own life, is that many if not most family members react to early dementia with anger and hostility, because they interpret the mis-communication and odd behavior as being willful and deliberate. They see the person with dementia as being stubborn, unreasonable, and irrational. It is only after the disease has advanced and they come to understand the true nature of dementia, that the anger and hostility is released. *End Quote*

OK, we can talk about this if you want, or not. But, I do think this is an example of the root of our recent problems to some extent.

Love,

Lynn

Lynn, I read your letter to your friend and I was moved. Again, I was reminded of my own situation with my friend. Every time I pick up the phone to call her I remember her harsh last words to me, and I put the phone down. I pray that things will work out for both of us.

Iris L.

Iris,

I can tell you I was devastated over what happened between Norma and I. I opened up to her and told her I could not understand why she was angry with me. That I had not done or said anything intentional to upset her. Then all hell broke loose.

She responded in such a harsh, cruel way. I cried for days. It is still very painful. She had/has no idea what pain this has caused me.

The good news is that now, after over a month, Norma and I are much better. It is behind us but I still have trust issues with her, but I can't share them with her because I am scared too. She still thinks that she is right and that her tongue lashing has corrected my behavior and problems. I really think it is all part of her own insecurity. She is clueless about what happened to us. I hope this email will help her to understand I never intended harm.

I also hope that you and I both can recapture our relationship with our friends. We certainly need all the friends we can get.

Take Care,

Lynn