No, you have not lost track of the date! As explained in the last issue of The Ribbon, we were late last week and with this week's issue we will catch up, and return to our biweekly schedule. Our thanks go out to those of you who were kind enough to take some time out of your busy days to send us something to share.
Our Food Editor, Micki, has reported receiving more new recipes for the Recipe Corner.
For those of you who are new to The Ribbon, please be aware that this is the forum to ask questions. Our readers have responded many times to burning questions, sometimes so much so that we have had to create "Special Editions"to share all the responses. From the Home Page of The Ribbon, you can access The Ribbon Archives and see these issues. Whether your loved one is recently diagnosed or has struggled for years, there is information within these issues that can help you. Please use it. If anyone needs help navigating the web site, the staff is always available to help. Just ask....we are all here for you.
February 22, 2002, One year ago today, my beloved Ann passed into glory to be with the Lord forever. It was a very hard day, yet it was a day of great relief for our family and me. We knew that the long good-bye was over. Since then, there has been days of great disappointment and disillusionment for the void is forever before me. The days dragged by. The nights were long with irrepressible dreams that roamed through the valley where passion reigns, only to awaken the memories of my loss and fall into a lonely solitude again. How wonderful this thing of moral love, yet only a semblance of the unconditional love from God above.
However, a peace has come to me because I know the Christ is all and in all. Is it not so that He is the great physician, the great healer of hearts as well as souls? I am at peace for I am not alone! I do still miss Ann, and I think I always will. Perhaps, this longing will only be stilled when I join her after this body turns back to clay. To this end, I wrote a poem that tells of my search for the final peace that I seek.
A Longing Still
His Great Love,
In many ways an Alzheimer's victim becomes easier to care for as they lose more of their powers. When they can no longer rise from a chair, there will be no more episodes of calling the police to help find the suddenly adventurous (and fast) explorer. When aggressiveness melts to placidity, or speech becomes scarce, there will be no need (foolishly)to ask, "Why am I treated like this?" The patient has less frustration and is more complacent about being managed.
But new problems arise as the patient's strength and mobility decrease substantially. I would like to share a solution presented to me by Ed's adult day care center.
Although Ed is in the most severe stages of the disease, with the help of a live-in paid caregiver, we are able to take very good care of him at home. A big help is his being able to attend a day care center a few days a week. But, although the caregiver is a strong, muscular young man, even he was beginning to suffer backpain from lifting Ed from chair or bed, and especially holding him erect for washing and dressing. We bought a sturdy device called a "stand-up lift" which lifts and supports the most helpless patient into an upright position from bed, toilet, chair, wheelchair, etc. It works like a charm and is especially good for thorough spongebathing.
I am told that with it a 95 pound woman can lift her 200 pound husband without strain. It is hydraulic and battery operated. I have heard that some sell for about $1700, but the one I bought cost about $3500. (I think it is tax deductible both at purchase and again if eventually you donate it.) They are ordered from hospital supply companies (yellow pages).
Once in a while I use substitute caregivers. They all appreciate it.
If you have family who would love to help you, but physically cannot, a gift of a standup lift would really be meaningful!
My husband wrote this letter, to help caregivers, and I'd like to share it with all the readers of the newsletter. This letter, along with the Packing and Shopping Lists he refers to in the letter, is now part of the Resource Cabinet materials for Caregivers at the UT Southwestern Medical Clinic for Alzheimer's Disease in Dallas, Texas. My husband has received Thank You cards and letters from caregivers, for the help he has given them, in caring for their patients.
Hints for Caregivers of Alzheimer's Patients
I, as a patient of Alzheimer's, having experienced the frustrations caused by the disease, am writing this letter to the Alzheimer's support group caregivers, to give them clues on how to communicate with their patients. I was requested to write this information by several of our support group patients, especially Jean Martin and Peggy Peterson, this information was then read and approved by the patients of the support group. A caregiver does not understand how hard it is for us to understand, and to let them know what causes us confusion.
We need to be asked short sentences. We would like to be asked yes or no questions if possible, or ask the questions one at a time. To prevent confusion when a patient asks a question that can be answered with a yes or no, please do not answer the question with a long sentence. We cannot understand why you used so many words to answer the question. While listening to the long sentence, that could have been a yes or no, we cannot comprehend all the information in the sentence and we get so frustrated that we "cannot remember what question was asked." We then get frustrated more and raise our voice or shout, and our caregiver cannot understand why. I was not angry with my caregiver, I was so frustrated by not being able to get an answer to my question and I had no idea how to put words together so she could understand what I was asking. and I forgot what my question was and I was frustrated because, in my mind, the question was important ???????, or was it?
So please speak slowly and in simple sentences. Give the person with Alzheimer's time to hear your words and prepare a response. Keep in mind that it takes up to a minute for the person with this disease to respond. Please listen when I talk, I have taken time to put the words together and I will not be able to repeat it. Example: I asked if my daughter and grandchildren were coming on Sunday? My care giver answered that her husband was under the weather (feeling bad) and they would see us Tuesday. Now how in the world, when I asked if grandchildren would be here on Sunday, now why are talking about the weather on Tuesday!!!!!!! A no, would have been satisfactory. Then I could have asked for more details if I was interested.
I know that when you have Alzheimer's you cannot understand why you are frustrated and you cannot tell anyone to talk slower or use short sentences, or why I did shout at my wife. I was not angry when I shouted at her, I was so frustrated by not being able to get an answer to my question and I had no idea how to put words together so she could understand what I was wanting.
I have told our support group about this, many of them said I hit the nail right on the head and wanted me to put this in writing so that others could benefit by knowing more about our problems and making communicating much easier. The days that I do not get frustrated by communication, my complete day is more pleasant and my mind is much more clear. Caregivers need to remember that we could comprehend long sentences and commands in the past and now we cannot, and we are very confused as to why we cannot. When writing instructions for a patient to do, that you feel they can handle and possibly keep them occupied, write each instruction as a single line, or leave several spaces between the instructions. This will help the patient from combining more then than one sentence together and not understanding what to do. I was involved in doing a session of craft work in one of our support group sessions. We were each given a cloth tote bag, to decorate with our choice of pictures from magazines for decorations. The ladies giving and instructing the session were very talented, and we cut out pictures that we chose and ironed the pictures on to a piece of cloth like sheet that would retain the picture until we were ready to iron the picture to the tote bag permanently. This sheet of cloth like material had a film of glue on one side that you could feel with your fingers, and you would put the picture on the glue side and the iron on the other this would transfer the glue from the cloth to the picture then when the picture was ironed on to the tote bag it would become glued fast to the tote bag. I and several other patients could not comprehend these steps and had to call the instructors constantly about how to do it. I finally figured out that there was a difference between the sides of the cloth, but I did not know what to do with it. We had glue on the iron and every other place possible trying to get the pictures in place. I told one instructor that she must give us instructions like we were in the lower elementary school grades, and the lady next to me agreed with it. That comment got her attention and we all got slower explanations and watched over more, and by golly we completed the task and had some very nicely decorated tote bags. The tote bag making also prompted me, that these fine people, that will take the time to help give us some entertainment, should be informed of our short term ability to understand instructions or commands, and the only way to do that is for me to write this information while I can. My wife has read many books, pamphlets and web sites on Alzheimer's and brought many bits of it to my attention, there is never any information that I can see that was given by an Alzheimer's patient at this time. We recently read pages on a web site from the Alzheimer's group in Lincoln, NE. and they have recognized that using short sentences and commands was the best way to communicate with us. When some patients get aggressive or violent, I believe they probably were capable of remembering long commands, conversations or dictation's, and after falling to the Alzheimer's cruel short memory span, the caregiver still talks to them in the usual long sentences and commands. The frustration is probably overwhelming. I was asked if I could make a list, to help them make their list for grocery shopping. I asked my wife if she would help me. All the help that I could offer was being able to relate to this problem very well, with Alzheimer's disease. When you open the refrigerator door and it is empty, you can see the egg rack is empty so you need eggs and the butter tray has some butter in it so you won't need butter. But what else goes into a refrigerator? Your mind goes blank and you cannot make 1/4 of a grocery list and you want to scream because you have made grocery lists forever. The shopping list, we have made, is a general list of items that are used in the household for cooking, cleaning, washing and necessary supplies. They will be reminders for the patient to look in that department to see if any thing is needed. I also was asked to make a list for packing a suit case for traveling, again I asked my wife if she would help. She and I, small I, made a list for both ladies and men. She always packed my suit case for me before Alzheimer's. The ladies list will help the husbands the most, as some don't realize how much of the clothes shoes and jewelry must match. The suitcase packing list we made, is a general reminder of clothing and items needed for traveling or going to a hospital. When going to a hospital a few items need to be packed for entertainment to help pass the time. Example: favorite books, magazines, cross word puzzles and pencil and paper for writing. I do minor repair work, mechanical, carpentry, house hold electrical and I have a written list for the tools needed for each repair. This saves me miles of walking back to the shop for the tool I forgot. The list evolved over a period of time as I cannot sit down and make a list, if I could I would not need a list.
Written by: David Spanel
Hints for Packing a Suitcase (List)
My husband and I came up with this list, at the request of some of the members in his Early Stage Support Group. I am sending it to "the Ribbon" and I hope that will be helpful for some of the readers. I have intentionally left spaces between the lines, so other items can be written in. A list for a woman, and a separate list for a man are included here.
When Packing a Suitcase...
--by Carolyn and David Spanelm1caro@att.net
I do want to thank you and all the wonderful articles and information that has appeared in your newsletters. It certainly played a large part in my struggle of dealing with my dad’s vascular dementia. I remember quite clearly that one of the first people I met on my journey through dementia was dear sweet AlzJane. Then it all mushroomed from there. All the members of The Gathering Place were a tremendous support to me and I couldn't have made it without them. My dad was taken to his home in heaven on January 20th 2001. My heart just tells me that it is time for me to move on with my life and do other things.
Editors' Note: Poppybenny has been receiving The Ribbon since it's beginning. I received this note from her, asking to be removed from the mailing list. While we will miss her, we understand her feelings and wish her only the very best in the future.
I just started getting your newsletter and find it very informative and comforting. I understand your need for input and I wanted to share something that I just discovered.
Early on, I had read the statement that with AD patients, "logic doesn't work." Being of sound mind and being logical, I would find myself trying to give my mother "logical" responses to her questions. In spite of this, my mother would keep asking the same questions! My sister and I both do that, and we find ourselves very frustrated because the logical answers don't sink in with my mother! As much as we know this to be true, we often find ourselves answering my mother as though she'll understand if we explain it to her! My sister and I have taken to saying to each other "logic doesn't work," or "there we go again, being logical"! It's funny, but it seems to ease the tension when we're exasperated! I say it to myself when I find myself feeling frustrated. We sometimes lose sight of the fact that nothing we say is going to make the answers sink in. It helps us to come back to the reality that dementia doesn't follow logic. So, when you find yourself getting all frustrated with a loved one because they "just don't get it," remember - Logic doesn't work!
Another thing I found myself asking is - who am I doing this for? Over time, we have tried to make things special for my mother or we might think that having her celebrate a certain occasion will make her happy. After Valentine's Day, I realized that sometimes introducing things that aren't in her routine upset her and get her all confused. My mother will try to remember Valentine's Day and then it starts a torrent of new questions (which she doesn't understand the answers to). I asked myself, for whom am I doing this celebration? My intention was good, but I had to step back and realize that Valentine's Day was meaningless to my mother, it disrupted her routine, andthings aren't the same as in the past. It's a hard concept to grasp, but I think in the long run, recognizing how confusing it is to her to "celebrate" a holiday can be more stressful for our loved one than not doing anything! It is hard to break traditions -- "we've always colored Easter eggs" or "we always go to church on thus and such." So, I am going to stop and think before I plan some "fun" activity and ask myself -- will this improve the quality of my mother's day or will it cause her some anxiety and confusion. I think I'll be able to make better choices using these criteria in making choices. In the end, the celebration seems more to do with "what we always did" and I have to face the fact that the times have changes, and so must I.
Editor's Note: Thanks to Jean for reminding us all that we, as caregivers, must be the ones who adjust. Our Loved Ones cannot adjust, hence their frustration. Their reality has changed with the advancement of this disease. And it is their reality that we, as caregivers, must understand.
Please keep those articles, e-mails and snail mails coming in, folks! We need you!