Alzheimer's Disease Support Group

Hi, i'm 100% new to message boards period. I've been a "lurker" for years but have finally got up the nerve to join.

My mom was diagnosed about 5 years ago and progressed quickly. It robbed her speech right away. She has been end stage for about 2 years now. My Dad is 84 and suffers from congestive heart failure. I have always had questions but never had anyone i could go to who is in the same situation. Actually, i don't really talk about any of it with anyone, don't want to burden anyone.

My heart is broken (for many reasons) but I treasure my visits with Mom. Some of my questions are:

1. Does anyone feel angry that their parent has Alzheimer's?

2. Does anyone feel deep sadness that their loved one may have felt extreme fear when in the early stages?

3. Have friends/family dropped off completely?

Thanks for listening!

Hi Chrismat!

My mom has had it for about 5 years. She's had a hard life, so I feel it's really unfair that she's ended up with it. It's something I've had to accept after so long. I don't think she really understood when she was diagnosed, what she had. I think she still is afraid of what is happening to her. She knows something's wrong, but can't put a finger on it. It is pretty scary to see how she's slipping so quick.

My mom had a friend for over 30 years who blantantly told me that she dropped my mom as a friend because she was too confusing to talk to.. I had called her at the time to tell her my father had passed away. I was very angry about it. Just because someone is sick, doesn't mean that you don't stand by then. I also have had family members do the same. It's really a cruel thing to do. I'm sure what comes around, goes around...

It's a hard thing to go through. I found it's important to keep your network of friends close.

Hope this helps!

yes, it helps! Thanks so much for replying. My Mom now suffers from strokes and seizures and i called my aunt (her sister) to tell her, because it didn't look good, and she told me they had made a concious decision to not see Mom anymore.

Now i struggle with whether or not i should call them when Mom passes. Part of me says forget it, but the other side of me says i'm obligated. Time will tell, i guess.

take care and thank you!

Hi Chris, I'm glad you decided to join us. We all need reinforcement from our peers as we make this dreadful journey with our loved one. My answer to your first two questions is yes.

Oh yes, I feel dreadfully angry that my mom suffers from this disease. What I really find though is that the anger is a mask for the sadness. To see someone degenerate from an intelligent, forceful, hardworking person to a stumbling, incoherent, frustrated and useless person over a period of 14 years has been one of the saddest events in my life. During the earlier stages she would get a look of horror on her face and she would say, "My head is not working right." So heartwrenching I always felt like crying. I could only tell her that we were here to help her and keep her safe.

My mom's friends had pretty much died off by the time she got AD, or they had health problems of their own, so I didn't feel they deserted her, but she forgot they had died or were ill so she felt bereft a lot of the time. Some family continue to see her when they can. Some completely deserted us. My friends did not so much desert me as that I gradually had no time or energy for them. I took care of Mom by myself for 10 years, and that is a lot of hard work and isolation. Since I had to give up and take her to a nursing home I am enjoying some of my old friends and have made a good many new ones. Yet my heart is broken too Chris. ANW

Chris, welcome and I am happy that you decided to write. Remember for each time you ask a question there could be ten others out there who also want the answer. As regards your aunt there are two possibilities; either she cannot cope with seeing her sister go downhill or she wants to remember her as she knew her. (Either way it is rather selfish). I would try to understand her position and would definitely contact her and let her know how things are going and especially contact her at the end.

I never felt angry that Brid suffered; I think I was too preoccupied looking after her but frustration was a huge problem now and again.

I often wonder what it was like for Brid when she was going through the early stages. She was in denial and was angry that I was taking over the day to day things that she always did so well. But my main regret is that she did not speak about it as she would have been very good to explain it to all of us if she set her mind to it.

As for friends.......... you soon discover the real friends who stand by you to the very end. One couple came here every week and sat with Brid and I and were here when Brid died. Another person came to me in church and asked what could she do; I did not even know her name and had to ask her. But, alas, some that we considered good life long friends never once came near us. Brid's family were a tower of strength and still are.

Such is life............

Tony

This is what helped me with my thinking on the friends and family who stopped coming around. They have not reached the stage in their emotional and spiritual lives where they can cope properly with illness and death. They just feel too uncomfortable to face it. They have a serious lesson coming when they are finally faced with a situation they cannot ignore or run away from. Then, if they are fortunate, their hearts will soften and they will learn the lessons of humility and empathy that make us what I think of as "human". The people who get through life having never learned that lesson are to be pitied the most of all. What a waste their lives have been even though they may see themselves as successful, superior, and perhaps even happy. They are cheating themselves out of becoming fully human. ANW

Yes, I am very angry. My Mom passed in '04. I so looked forward to going on vacations and outings with them. I can't get Dad to go out just to get out of the house. I feel he has been cheated, ripped off completely. I know he is very scared. He keeps talking about going home, where he grew up as a boy. I believe he is scared we are going to take his home, independence and freedom. Most of all, he's scared because he knows what he has and knows there's nothing to make it stop. The day in the doctors office, when we got the diagnosis, I saw his face turn almost purple. He put his head down to hide his face. That was fear and dissapointment. I wanted to cry so bad. I felt my heart tightening in my chest. My Dad is very depressed. I have been also. The last few months I thought I was going to crack up. I can't stand what he's is going through.

I am sorry to say that my Dad's freinds don't live close enough for visits or they have passed on. I am ashamed of the family members that don't even call, and often angry at the one's who do. They don't have trouble calling me to give out orders or questioning me,

so why don't they just call or go see him!

I am sorry you are going through this too. I often feel alone. I and my husband are very close, but even he gets exhausted with the family politics. I have been feeling everything you are and ANW could not have put it better. I am blessed I have a close relationship with my Dad. Dad has always been here for me so I will be there for him. The others will have to deal with this some time. I wonder if I am a bad person. I think when it does hit them, I won't be sympathetic. I move through the emotions of up and down every other day. I try not to waste much energy on there feelings because my heart, soul and mind are occupied. I am trying to focus on taking care of myself so I can be there for him.

I have been going to a girlfreinds house two times a week for break. She is very understanding of my situation. It has been good for me. We are bonding like sisters. I think a little angel sent her to me. Please stay with this group. It really has made a difference.number6

Amen for girlfriends. I am so glad you have a wonderful friend like that.

So many words of wisdom in this discussion, thank you all. It is tremendously validating. Instead of feeling like i'm doing everything wrong, i feel a bit more "normal", whatever that is

Had such a wonderful visit with Mom today. I usually go at meal time and feed her (feels like we are interacting together, rather than a one-sided visit). I also get to know the staff, and other residents. There are some darling people there that i've become somewhat attached to.

A good day

Take care all

I will tell you from being a care giver in a nursing home.knowing your staff there is a great thing.you will alsways have someone who attatches to your loved one and knowing you will help in your mothers care...the anger I am sure is toward the Alzheimers itself,what a horrible diesease to rob someone of who they are and take away memories you have built..anger is normal fustration with your loved one is also..its hard to know that thought they are visible there,the life they had is gone you have all the memories now..but I encourage you while visisting talk to your mom about memories you have I have seen amazing things happen and sparks of reconition in the least thought to have them..and know dont due this alone come here and talk we are here to listen..

with friends and family that drop off,well inless they are in your shoes they will never understand,A true frien will stand by you no matter what..there is this saying I love..

" A friend will bail you out of Jail, a True Friend is sitting next to you"

HI Chrismat...

I am late to this discussion, I just lost my mom to Alzheimers...and it broke my heart, as I went through the steady progression of the disease with her.

I do remember my mom, sobbing early on in the disease because she could not remember her children's names, or that she had just come back from a doctor's appointment, and as time went on she would ask where my dad was.

My dad predeceased her, and she had questions that I did not know how to answer in a way that would lessen her stress and fear...

I found a article she had cut out of a newspaper, my mom had slipped inside her bible and after she died.I found it.it brought tears to my eyes...it goes as follows:

To My Children

When I spill some food on my nice clean dress

or maybe forget to tie my shoe

please be patient and perhaps reminisce

About the many hours I spent with you.

When I taught you how to eat with care

Plus tying your laces and your numbers too

Dressing yourself and combing your hair

Those were precious hours spent with you

If I tell you the story one more time

and you know the ending through and through

Please remember your first nursery rhyme

When I rehearsed it a hundred times with you

When my legs are tired and its hard to stand

Or walk the steady pace I would like to do

Please take me carefully by the hand

And guide me now as I often did for you.