The Ribbon - Care for Caregivers
Issue 13
July 10, 1998

I am back from my trip to a family reunion in Michigan. I had a great time visiting with my Northern family. I didn't realize I had so many. The weather was beautiful and so cool that we were running around trying to buy sweatshirts or jackets. I sure hated coming back to the heat and humidity of the south. I have an apology to make to Karen's brother, John. I said in the last issue that Karen would be moving to assume the role of primary caregiver to her mother. John has had that job for years now. He is the primary caregiver and has kept his siblings apprised of what is going on with their mother. Karen is making the move to assist him with the job. John, I didn't mean to upset you in any way, you have done a great job and will continue to do so with help now. I sincerely apologize to you and your family. Karen's letter to me will be in the Email section.


You Can Never Win an Argument With an AD Patient

"He tells me he wants to go home. We've lived here for 35 years, and when I try to explain to him, he gets mad at me." "I've told her time and time again not to put things in the waste basket, but she doesn't listen." "My Dad asks, 'Why don't the buses run by here anymore?' or 'How far is it to the river?' When I tell him it's 3000 miles to the river he gets mad, and says I am a fool. He thinks he's in Cleveland. He hasn't been there in 50 years."

We have a hard time letting go of the old habit of reasoning with our spouse, parent or friend who has been moved beyond reason by dementing illness. Rather than "teach" the woman not to hide things in the waste basket, we, as caregivers, must learn to accept this behavior as harmless and to check the waste baskets before emptying them. The woman whose husband wanted to go home learned that she only frustrated both of them when she tried to "explain" that they were at home. Rather, what worked was to go outside and walk to the corner and back. Upon entering the house a few minutes later, her husband was content. His short term memory was poor, and he would ask the same question again later, but there is an important lesson here: there is no reason why the patient's reality must conform to ours. We must not let our discomfort with our patient's condition lead us. If Dad thinks he is in Cleveland, what is the harm in that? If an Alzheimer's patient expresses a request that is obviously impossible, we may be tempted to respond with a "reasonable" explanation of why it cannot be done. A caregiver told me of the time her husband woke at one in the morning and wanted to go to San Francisco. Rather than explaining to him all the reasons why it wasn't a good idea, she said, "All right, but we'll have to get dressed first." And ten minutes into this process she suggested having some ice cream and then watching television, and then going to bed. His poor short-term memory allowed her to redirect him. No one underestimates the stress of being awakened at 1:00 a.m. and kept up for 40 minutes, but it could have been worse if the patient had become agitated in an argument about the appropriateness of a visit to the city. It sometimes helps to become a co-conspirator. Perhaps you have hidden the keys to the car, and Dad wants them. Or you've come to visit Mom and she accused you of taking the checkbook she mislaid. Instead of responding to the real situation, why he can't drive or Mom's history of losing things and the hurt of accusations, we might agree that the items are lost and offer to help look for them. After looking for a bit, suggest that "Well, we'll find them, but let's sort clothes right now. We really need to get this done." Wait for an opportunity to redirect, and always talk positively about the future. "It's going to be all right." Remember, you can never win an argument with an Alzheimer's patient. Of course, all this is easier said than done. We take a great deal of baggage into these interactions with members of our family. Perhaps you thought he was manipulative when he was well, and now you think he really knows. It takes time to internalize our knowledge about dementia and it is stressful. Support groups can help. These issues are a common theme and you can discuss your feelings and coping skills in an accepting atmosphere. Courtesy Alzheimer's Association -San Francisco Bay Chapter


Not Too Much Notice Recommended

Families and friends often wonder how much advance notice should be given to a forgetful patient when they want him to attend a certain function. Families find that when they let him know a day or so in advance, he spends most of this time asking if it's time yet. It is not advisable to give the forgetful person too much advance warning, but it is equally inappropriate to omit all notice of a trip or event. This notice, however, can be as brief as 30 minutes or less. This would be sufficient time to prepare the person physically and offer him the emotional support that is needed. Such an abbreviated warning also decreases the time in which the person can become anxious or resistant. An occasion for stress may occur when the forgetful patient is advised of a future event, such as a family celebration or a visit from a relative in a few days. Although helpers may think they are offering the individual something to look forward to, the person's ability to put the information into a future time frame is impaired. he may recall the words but he will continually relate those remembered words to the present. He may repeatedly ask, "Is my sister her yet? Is it time for dinner?" Understanding that these responses are caused by an extreme disorientation to time, and are not simply annoying devices or bids for attention, helps the caregiver avoid another occasion for stress.

Courtesy Alzheimer's Association Western North Carolina Chapter


Why Alzheimer's Patients Behave the Way They Do

by Harry S. Lipscomb, M.D, F.A.C.P. Professor of Family and Community Medicine Texas A & M University College of Medicine Family members of Alzheimer's patients often say to me, "We just can't understand why she acts so normal sometimes and then can be so difficult at others." Or more often they ask, "Why does he ask the same questions or do the same things over and over? Why does he constantly touch things or wander aimlessly?" The answer to these questions lies in a study of how you learn and how you forget.

The Remembering and Learning Processes

To remember events that have occurred in your life, your brain requires that these events be so vivid that you reflect on them afterward. Consider how you learn a language or a mathematical formula: you repeat it until it becomes second nature to you. And if your teaching is inadequate (or your teachers unmemorable), it's likely that it lacked the vividness to attract either your attention or your memory. Also consider the really important events in your life: accidents, first love, or first school triumph or disaster. Each of these events was characterized by a "memorable" sort of afterglow because you endow them with vividness. I don't remember my first cut (or stitches afterwards), but I will always remember my first love, simply because I attached such world-shaking importance to the event. As you reflect on these things (perhaps many times as you grow older) the memories become essentially shadows of the event. Moreover, you derive from the event a whole set of secondary emotional feelings: pleasure, sadness, anger, nostalgia, affections, excitement, etc. These events (and the emotions they arouse) become stored in special areas of the brain for deeply embedded information, commonly called long-term memory. If your special brain areas for deeply embedded information remain basically intact (as they seem to do in those with Alzheimer's), you can recall not only these memories but also your emotional responses to them. It may take a little longer for older persons to resurrect the memory, but if they are allowed to ruminate a bit, the memory comes to the surface. Equally important is that these skills, events, and learned things are resurrected often as we mature and they are referred to often. This is the way you learn from experience. For example, it doesn't take many burns for a child to learn not only about fire but about heat. Of course, in early life, most of the warm things were pleasant. Perhaps the hardest part of learning for the child is to distinguish the difference between good heat and bad heat. This is the first difference in the memory disturbance of dementia. Ask a demented person who still has language skills something about his younger years, such as, "Do you remember when you had your first party dress or your father had a buggy?" it will surprise you that these deeply-buried experiences are vividly recalled. A lot of brain energy went into the storage of these experiences. So most persons with dementia have a rather good long-term memory of their early life.

Effects of Alzheimer's

Alzheimer's patients have lost the ability to recognize current life events with vividness. They cannot learn new things because they cannot reflect upon them. If they learn to make a stitch or throw a ball on Monday, they cannot remember how to duplicate the task on Tuesday. Everything is new and there is nothing left for reflection, storage, or recall. We deem this to represent loss of short-term memory. Even when you penetrate what seems to be a grim apathy in these persons, Alzheimer's patients can never again endow an event with vividness so that they'll remember it. For example, Alzheimer's patients seem to know warm from cold, but they seem to have lost their ability to resurrect from deep memory any useful, newly learned information. They will remember their first burn, but they won't be able to remember that the bathtub today (like yesterday) has hot water in it. This explanation of short-term and long-term memory is a simplified version of a complex process. There are many other things involved in this process. Alzheimer's patients not only cannot endow vividness to events but cannot reflect upon these events and learn something new. Your efforts to teach, retrain, or enable Alzheimer's patients to do for themselves are most often fruitless. This is not to say that you shouldn't try, but only up to your limit of frustration.

Caregiving Techniques

In dealing with family caregivers, one of my hardest tasks is to show them how to handle those behaviors that reflect this loss of vividness and learning capacity. If a loved one has died and the loss is no longer vivid, Alzheimer's patients will not remember it. Thus, they will call, endlessly, for a departed spouse. I see families attempting to impose reality with phrases such as, "Mamma, you know Papa Tom's been dead for 10 years." These delusional thoughts (mostly over money, infidelity, or jewelry) also may exhaust unimaginative caregivers. When a loved one insists that someone is under the bed, it is fruitless to attempt to argue with them. A perceptive daughter told me she had stopped saying, "Mamma, I've looked under the bed and no one's there" and replaced her answer with, "What color hair does he have?" Her mother then will give her a long and detailed description. Basically, what I'm saying is that not only have these persons lost the ability to reflect and learn, but in their world there is no reality (as we know it) and no such thing as truth or falsehood. This means it's all right for caregivers to fib and fabricate and to deflect, deceive, or distract these folks. This notion was brought home to me most poignantly by a woman whose 7-year-old son asked, "Mamma, why do you lie to Grandmama?" The mother replied, "It's easier on her and all of us." Lying is very hard for most of us who have spent our lives insisting on the truth. But Alzheimer's patients live in another world. They remember the "long time ago." live only in today, and cannot plan a future. Caregivers may find it painful, but they must enter this other world to make their life easier and to make life more comfortable for their loved one.


E-mail Box

From patricib@student.flint.umich.edu

A BIG thank your for your wonderful news letter. It is very much appreciated. I printed off the first 4 issues of the Ribbon and passed them along to my mother. This is the first literature that I've passed on and she didn't seem very receptive. (I estimate that my dad is hovering between stages 5 & 6). You would think that by now we would have not been in such denial about dad's situation. I hope she will take the time to read it because I think it will help her cope and get a sense of direction (myself as well). Anyway, thank you again so much. Pat Bingham


From Tennisky

I wanted to take the time to thank you for your newsletter. It has been very helpful to my mother, my employer and myself. My father is in the mid stages of Alzheimers and the information in you newsletter have helped me to understand a lot of behaviors and has given my mother a lot of insight. My employer recently informed me that his mother is also suffering from this tragic disease. I have begun printing an extra copy of The Ribbon and taking it in to work for him. Again, thank you very much for this helpful lifeline. Paula


From LauraW64

Thank you for the Ribbon! I print them out for my family, who I am going to visit in one week. My dad has early stages Alzheimers and he is starting to get a little worse, so I'm going home to help mom get some support and better doctors. Your newsletter gives me information and will hopefully be a tool to help my mother see that there is help out there and that Alzheimers is a real disease, not just dad being negligent. Good luck to you Karen in your life change. I'm sure you have so many mixed feelings about this move. Jaime, have a good trip and I hope everything works out at the reunion! Thanks again, Laura Walker LauraW64@aol.com


From NO900

How do I manage these problems? Under REVIEW think over what has happened and what will I do if faced with this problem again. I certainly would do things differently. Last November the day before Thanksgiving, I ordered my husband to shower and put on clean clothes, something he asumes he doesn't need to do, this is my main complaint dealing with Dementia, well things got out of hand and I decided to go out in the car, I locked the doors of the car and he threw himself on the hood of the car looking at me from the windshield I backed out with him hanging on and drove two blocks before he asked me to stops so he could get off. I let him off and kept going. I must admit at that time I was nearly out of mind dealing with the changes in him and just couldn't accept it. Well now eight months later I have learned a lot from your letters and realize it is I who has to change because he can't. I am still under a lot of stress which will continue but also I feel that I am in control. I receive E mail from several people and even each case is different it causes the same stress on the caregiver. I went thru this with my Mom but Husbands are a lot different to deal with. Thank you again for all your help. [ Love, NO900


From Csober

Dear Ribbon .... Angels This morning after being up at 1:00 and at 3:30 and then up for the day at 6:30...... I thought I was at the end of my rope.... When lo and behold I open up the computer and the Ribbon is here... Not only Here But it is here to help Me..... The issue dealing with the behavioral problemns.. Thankyou Lord and of course Angels... For sending me the answers to some of my problemns and of course the knowledge in black and white one more time that I am not alone ...Bless you for what you do. Csober


From STSWILLIE

The Alzheimer Group from the Better Health website has started an Alzheimer chat on Thursday nights at 9 PM eastern time. To access this site: http://www.Betterhealth.com (click on the Chat button, then click on the Weekly Schedule and find the chat on the schedule, and finally click on the hyperlink). If you need further assistance, IM or email me. Sue (STSWILLIE)


From KMenges581

Just wanted to thank you for the kinds thoughts and words in this recent issue of The Ribbon regarding my 400 mile move to live nearer to my Mom. However, I would like to correct one word you used. That word was "Primary." I do not consider myself going into the role of primary caregiver. My brother, John, has been carrying the burden of Mom's care alone for the last 4 years. This, in addition to a busy architectural practice and a young family, have left him frazzled and exhausted. He needs help. Since I am single and have a job I hate, it is no big deal for me to relocate. I am really looking forward to it. Oh, I know, it will be very different being there day after day instead of talking on the phone 3 and 4 times a week and visiting every other month or so. But, for now at least, while there is still a spark in her, I want to be there. For, I know, the day will come when she will not know me and my heart will break. So I must take what I can, help where I can and I feel great about it. My other brother and my sister will be 6 hours away but we will do the best we can to continue to work together to see that Mom has what she needs. It has taken us a while to get to this point. We had that muddy river called Denial to cross. But I think we have. Just like in our group, it is the sharing that gets us through each day. I wish you well on your journey, Jamie and will let you know when I have to unplug this thing for my move and, more importantly, when I plug it back in, closer to Mom. Love and hugs, Karen


Hard to believe, but it is already 6 months since The Ribbon started. That first issue, all 5 copies, went out in Jan. This week we have reached a milestone. The list is just over 300 now! And still growing with new requests almost daily. Jamie and I would like to thank everyone for their continued support in our efforts. That growing list emphasizes the need for this information to Caregivers and loved ones who are struggling with Alzheimer's Disease. Please keep sending your comments, thoughts and information to us so we can continue to share with others. It is through this sharing that we all find the strength we need to carry on.....Love and Peace, Karen

Couldn't be better said. Until next time........
Hugs and Prayers,
Jamie

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