Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 5, Issue 3
February 4, 2001

www.TheRibbon.com

I returned from another trip to TX on Friday. I spent a week with my wife-in-law (husband's ex-wife) and my stepson. She had gotten so depressed in caring for Roger 24-7 with no help that my help was needed. I am happy to say that he has improved enough to start Adult Day Care. Of course with him having Down's Syndrome we told him he was going to school. He loves it there. We know his health will continue to decline but...the doctors more or less gave up on him 10 years ago and with his mom's help and the grace of God he has continued on.

I so throughly enjoyed spending a week with him and his mother. For the first time in 21 years we finally all got to really know each other. A loving child who needs help can really bring people together. I ran into something while there that has given me pause. Roger's mom has never been around someone who is really sick. The doctor did not actually say "Roger will need to stay on this medicine for the rest of his life". For someone who has no idea about sickness or ill health, she did not realize that she needed to get a new prescription when the medicine ran out. She thought it was just to get him over the problem he was having at the time.

We never know what someone else does or does not know until we are put in their shoes. I never would have thought about this problem. I guess growing up in close contact with so many of my grandparents, I've just always known about such things. There are those of us who, like Roger's mom, have not had much contact with the medical world and do not know. We all need a little help sometimes.

If you or someone you know is a caregiver, tell them to ask the doctor if the medicine he prescribes is temporary or permanent. It makes a major difference. Do not take it for granted that a person knows.

Thoughts on EOAD
taken from the January 23rd journal entry of Jan/Mina (Cwadephill)

January 23, 2001

Spent most of the day buying, cutting, and finishing lumber for the belt racks. Made up a new flyer, took me a while but I was pleased that I was able (after a bit of fumbling) to create one on the computer. I received the following question from a friend, I have decided to enter my reply here in my journal. For now these are my feelings, I want to see if perhaps they change as time goes on, and this is the best place to save them.

Among them is one asked by people who have been recently diagnosed with AD, "What should I do?" Would you be kind enough to offer your advice?

Thank you Mark for thinking of me, for you certainly know I have very strong opinions on this particular subject <VBG>. Now that they have a diagnosis they should at last have a name (and at least a bit of piece of mind) as to what has been terrorizing their lives. They no longer have to cover up, and be defensive -- this is something that can be discussed and understood given that one empowers oneself with knowledge. First and foremost, I am sure the individual has probably (hopefully) been given crisis counseling by the Alz. Assoc. and informed of the need for swift action in matters pertaining to financial and end of life decisions. This in and of itself seems to really trigger the 'stages of grief.' For usually the emphasis is placed on the CG, and the losses and hardships that they will suffer because of our diagnosis -- and we in turn are handed the coffin nails and expected to quietly acquiesce into dementia, and we lament and rage against all we see as our losses that in most instances are not acknowledged.

I sincerely believe after diagnosis that partners need to have a joint counseling together. Many times the signs of dementia have been hidden from the CG, oft times there are extreme misunderstandings - a spouse may think their partner has been carrying on an affair - finances may be in a shambles - many relationships are on the brink of separation, etc., -- and then a devastating diagnosis is given and is supposed to be shared intimately among two people who may be in strong need of counseling for what has been carefully hidden and what has been misunderstood. So to me to have a strong foundation of support the air needs to be cleared. The diagnosed person needs help in understanding why they chose to hide their dysfunction, and an understanding of their erratic and uncontrollable behavior. The spouse needs information on the behaviors exhibited, what can be expected -- that there is no affair, no loss of love -- just a loss of self of the diagnosed person and that their actions are supportive of that diagnosis.

Then too, I think the person diagnosed really needs help initially with grief counseling -- there is so much of an unknown future ahead of us that we feel a loss for, and grieve for long before it will ever come to pass, as well as grieving for the present loss of self and position in our world.
I would advise them to seek out a support group of peers, so that they will feel less isolated in their diagnosis. People who are not diagnosed tend to discount our fears, as they question and we try and explain the early changes, often they will comment, "That happens to me all the time," and we are put in a position of proving and defending our diagnosis -- Heavens, why on earth would anyone really choose this diagnosis for themselves!!

So instead of sharing and being able to discuss and perhaps understand better we retreat, isolate ourselves -- this is only good for compounding the effects of depression! I would let them know that there is now an online Internet support group, entirely composed of people with dementia. (eGroups : CWPML), that we have founded a nonprofit group for the support of dementia patients with a sting patient advocacy (DASN Homepage), and that we have established a twice a day chat hosted by our peers in which we can communicate in real time. These groups are an international composition US, Canada, UK and Australia -- as much as we are the same we are different and there for each other. Also there are many patients that keep an on-line journal, and you can read of their journey and how they have found ways to cope. Subscribe to "Ageless Design, Alzheimers Daily News Service", and keep themselves abreast of the latest occurrences in the Alz. D world.

And finally I would tell them to be hopeful. The advances just in the last two years have been phenomenal. And for some of us the new drugs, and a strong regimen of self help are making a great difference. My tests scores for the last 4 years have shown incremental improvements -- not decline. I hope some of this will be of help to you Mark, I probably could go on and on, but I think this just about covers it! <G> Thank you again -

Jan/Mina's Journal
www.ycsi.net/users/laura/jmjournal.html

Editor's note: We feel that it is extremely important to be kept informed of how the person who has been diagnoised feels. We think it will continue to help us be better caregivers and family members.

In Passing: Those We Must Remember

From PHOTOLJT
Dated 1-23-01

My Dear Gathering Place Friends:

It is once again with a very sad heart that I must pass along some very sad news regarding one of our members.

I received an email from OnlyFourPerCent, Carole, in response to the last couple I have sent regarding our other friends' losses. She wanted us to know her father passed away on December 11th from what the doctors labeled as Alzheimer's but what she and her sister feels is Lewy Body Disease. Below you will find a copy of her email to me. It is Carole's wish for others to learn from their tragedy.

Please join me in extending your deepest sympathies, thoughts and prayers to Carole and her family.

Linda,

I was not a regular in your Gathering Place, but did stop in once in a while. It was helpful to see the information and caring shared by those in the room.

My father died Dec. 11th from what the Professionals kept "labeling" as Alzeimer's. This was also the treatment path. With lots of research and thought, my sister's and I sincerely believe he had Lewy Body Disease, which is also a dementia, but needs different treatment, especially concerning medications. Lewy Body is apparantly second in number only to Alzeimer's, yet the doctor's,etc. that we worked with decided to lump the Dementia's under one label.

We have no feelings of guilt, as we did everything humanly possible in the last six years, but some of your gathering place friends may benefit from what we didn't know. For Example, Lewy Body patients are EXTREMELY senitive to anti-psychotic medications (commonly used with other dementias), which debilitate them and speed progression of the disease.

I wish all who must care for a family member with a dementia my loving support.

Carole

Good News!

With your permission, I would like to include The Ribbon in Finding the JOY in Alzheimer's. It will be listed in the resource section with a brief description of what you offer (e.g., bi-weekly online newsletter, The Gathering Place, etc.) (FYI: Book to be released as a Preview Edition in May/June. Formal Publication date is tentatively set for Sept, 2001.)

Smilingly Yours,

Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's (NOW AVAILABLE in Audiobook!) and soon-to-be-released, CAREGIVING 101 and Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times

Here is an article sent to Brenda by PHOTOLJT

My father, who lives in Illinois, was diagnosed in early 1997 with Alzheimer's. It hit all of us, especially my mother, very hard. Even to this day, my Mom has not totally come to grips with the disease. My part in this is I am the oldest of two kids; I chose to move to California 20 years ago. My brother has remained in the area and has been a constant source of support for my Mom.

You ask about the joys that Alzheimer's has brought. They say out of something bad, something good will come. For me there has been so many. Just before the diagnosis, my brother married. His wife has been a wonderful addition to the family; she jumped right in. My sister-in-law went right to work learning all she could; she took the lead and kept the family on track. Even with a new baby and twin boys, she was at my parent's home as often as she could be to help my parents. One joy found!

It is hard being 2000 miles away. There is such a feeling of helplessness that you, at times, drive yourself crazy trying to second guess what your family is telling you; what stage really is your loved one in. There are the telephone messages that you have to endure because the family doesn't want to say what bad thing has just happened; so then you are in orbit with your mind going 20,000 miles an hour, imagining the most horrible thing. That, I believe, is the worst part of the disease for me.

The most wonderful part of the disease is the computer. It has enabled me to research the disease and be better informed so I can share that knowledge with my family so they have an idea of where to go for help. The information I have been able to attain has more than paid for the computer! However, there is a more astounding side to the computer.

In not being able to be there for my family physically, I went in search of people who might be able to give me more of a real life perspective of what it is like to deal with Alzheimer's and what emotions they go through. One night I happened to stumble into an internet chat room with a group of people from all over the country. It was amazing to see how many folks were going through some of the same problems my family was facing. With me not being a bashful person, I jumped right in and began asking question after question. I ran across a lady in that room who was a true jewel; she had lost her mother 17 years prior and was continuing to aid folks who needed support. Jane was one of the biggest joys I have encountered through this; she was an inspiration. I never got to meet her personally and only spoke once with her on the telephone, but her heart and compassion for the people in the chat room never wavered. She passed away after a couple of years of knowing her. What a void that was left.

But again, as the saying goes, out of something bad - something good will come. Oh my stars! Jane and I had discussed the possibility of opening up a website to assist others with this same plight. Jane did not see the project come to fruition. It was a tough road trying to figure out what to do and how to lay out the format. But again, what joy was found in that. At the time, a 14 year old young man jumped in and offered to do the work on designing the web page. I have a dear online friend in South Carolina that went to work on finding just the right graphic for the page. Another dear online friend in Washington State kept after me to see the project through. And after seven months of work and fine tuning, the site opened and has been a constant source of joy; not only for me, but for all who have come to visit.

Another joy; there have been some absolutely wonderful friendships that have blossomed from the room; what a blessing! However, probably the biggest reward; watching the folks who enter the room. They come in lost, bewildered, and almost ready to give up. I sit in amazement and watch as the "old-timers" in the room come to life, taking the "newbie" under their wing. I just sit and smile as I watch. Sometimes there are tears of major joy as I watch some of the older folks I know, who haven't quite come to grips with what is going on in their own lives, come to life and gently persuade the new person to open up about their situation. That joy is the knowledge of how the older members in the group have evolved. The bigger joy is watching the new person grasp the concept they are not in this by themselves - there are warm, wonderful, and caring folks who have been down the path. I am crying with such joy now as I reflect on the process.

One of my biggest joys is having been on a vacation at a dear cousin's home. I took her to the room to show her what it was about. She sat watched and was blown away as the folks tried to determine a new person's plight. It wasn't until she took me to the airport, however, when she told me how proud she was of what had been accomplished; the avenue made available; and how many lives that had been touched (and ultimately will be touched), if not for just a brief second, and what a difference the site would make in a lost soul's life.

The last of my biggest joys is being able to have met several of the online friends face to face. I vowed that with not being able to meet Jane, I would not let that happen again. The very very special folks I would make time to see. I now have two new wonderful sisters who I met in Reno. I flew to South Carolina and met a truly inspirational lady there - we went on to Tennessee to meet two other wonderful friends there. On the trip to my cousin's, I got to have lunch with another amazing lady. And I met a lady on my recent trip home for the holidays. All such special angels.

So it is my hope that all who read this will take just a bit of a different view. It is a horrible, horrible disease; no one could ever argue that. However, those who you come in contact with, whether it be in person, through letters, via the telephone, or on the internet, can make such a positive impact on how one can come to accept the disease. It is really such a blessing that a higher power saw the special qualities in an individual to be entrusted to someone's care. It is all in how you look at it!

Love Always,
Linda

Support Groups Are Essential to Caregiver Wellbeing
by Rich O'Boyle, Editor, ElderCare Online

Sometimes the emotional side of Alzheimer's Disease is just as hard to deal with as the physical side. You may have fears and concerns or feel overwhelmed by your situation. Everyone has different ways of dealing with these feelings. Your attitude about your Loved One's condition, your expectations, and how well you cope with the disease can play a big part in the quality of life for both you and your Loved One.

We tend to rely on formal and informal networks of friends, family and professionals to help us through hard times. In general, having close and supportive ties with friends and family seems to have a positive impact on health. The people you're closest to are the most likely to give you the support you need. Even so, you may have trouble asking for help. If you do have trouble asking for help, think about specific ways in which people can help, and start by asking one person to assist you with the easiest thing on the list. You may be surprised at how glad people are to help.

Sometimes only a professional counselor or other people facing the same disease can relate to the feelings and caregiving challenges that you are facing. A good counselor can help you cope with sadness, depression, and feelings of being overwhelmed. If you think counseling might be right for you, ask your doctor or other healthcare provider to recommend someone in your area. With a complex, poorly understood and relatively rare condition like Alzheimer's Disease, your peers will have some of the best advice and deepest understanding of what you are going through.

Join a Support Group

Healthcare research has shown that support groups - groups of people with the same condition who get together on a regular basis to discuss their illness - often help people cope better with their condition. For example, a study looking at women breast cancer survivors revealed that the women who participated in a support group lived longer and had a better quality of life than similar women who did not participate in the group. The women in the support group learned coping skills and they shared their feelings with other women who were in the same situation.

You will need to make time in your schedule to regularly attend a group. It will be one of the most important things you do for yourself. The camaraderie and relief from isolation are essential to maintaining your emotional balance and wellbeing. "Caring for the caregiver" is one of the first - and most important - lessons that you will learn. Join a group early when the disease is diagnosed in your Loved One.

If you are interested in a support group, ask your doctor or other healthcare provider about available groups for Alzheimer's Disease. Ask your local Alzheimer's group for a list of local support groups. Churches and synagogues, and other houses of worship, hospitals, home health agencies and senior centers, might also have groups that could offer you the social support you need. The Eldercare Locator (1-800-677-1116) maintains a directory of support groups and services. Your county's Area Office on Aging or university-based Alzheimer's Disease Research Center maintains lists of local resources.

ElderCare Online's Neighborhood Network contains links to state, county and local resources, including Alzheimer's Disease support groups and Area Agencies on Aging. We have listings for all fifty states and the District of Columbia.

When you consider joining a support group, you should look for one that:

• Provides a safe, secure and welcoming environment
• Respects your confidentiality
• Encourages respect among members
• Is convenient to your home or place of work
• Offers several meeting each week that fit your schedule
• Is run by both experienced professionals and supportive peers
• Accesses a network of guest speakers and professionals

Use Online Support Services