Are you as acaregiver feeling the roller coaster of emotions that I feel? I have always enjoyed the Holiday season. Now that I'm a caregiver, I still enjoy the season because of my children and the magic I see in the eyes of my grandchildren. But...I also dread the season because routines are harder to stick to, and we all know that routine is very important to our Loved Ones with Dementia. I also grieve because I know that this could very well be the last year that my Loved Ones will be here to share or to understand the very special meanings of this time of year.
I try to take a moment each day to find something joyful. I am having a hard time with that right now as my grandfather is having another round with his congestive heart failure. This time there will be no hospital trip, we are making him comfortable so that he may leave this life while still at home. It is so hard to do when my grandmother who has Alzheimer's Disease keeps trying to get him to respond and do things as if nothing was wrong. It is such a double whammy.
I am finding something to brighten...at least a moment...each day. Could it be my little 2 year old grandson seeing Mammaw's "Coca-Cola" Christmas tree and saying "I touch it?" with such anticipation? Could it be the look on my 7 year old grandson's face on Christmas morning when he opens up a bulletin board just for him? You see, he has ADD and has struggled so hard with school work. He has always admired his Uncle James' bulletin board with all the Honor Roll Ribbons and the Citizenship Ribbons. Well, last 6 weeks, Drew got one of each and he's getting his own board. Of course, there is the satisfaction of knowing that my teen sons think they won't get a Sega Dreamcast because we couldn't afford it. Heehee It's under the tree already.
I guess I'm trying to tell each of y'all, just when you think it can't get worse, there is always a moment, even if it's just a moment, to have something to smile about.
Happy Holidays to each of our readers, and that includes those who read The Ribbon after it is printed out and shared.
Hugs to all, Jamie
As some of you already know, my 77 year old mother was in the hospital for 8 days. She was having difficulty swallowing, which prompted a visit to the doctor. Turned out that she was severely dehydrated and anemic. The anemia was caused by a hiatal hernia. She is now on medication for that. On the bright side, she received a complete physical and, to our dismay, is in surprisingly good health for her age. Except, of course, for the AD.
My brothers and sister and I talked many times over those 8 days. My own grown children were involved too and we all came to the unanimous decision...it is time to place her.
The day she was released from the hospital, my brother John and I picked her up and without any explanation, drove her to the personal care facility we had found. During the course of her hospital stay we met with a number of facially administrators and finally selected what we feel was the best one. She did not ask where we were going, or why. We got there, she was greeted by the staff and other residents and was whisked off for lunch. We took care of the paperwork and then John and I left, giving the staff the responsibility to deal with Mom. Turns out that she is adjusting beautifully. I've been to see her and am amazed that there are no questions of home or why she is there. It makes me realize that the time was right, she was ready to be placed. She is well fed, well cared for, content in talking to the other ladies. She's seen a podiatrist, her blood levels are being checked and today, getting a haircut when the beautician comes in.
John and I have to face the chore of moving her things from her apartment and I know that will be hard. But it is time. The life that existed in that place is over for her. Her new life begins. And it is my fervent prayer is that she will continue to have some peace. The biggest thing I've seen so far is the lack of fear in her eyes. That was so painful to see. And now it's gone. I know that the AD will continue to take her from us but perhaps, in the meantime, we will have some moments to treasure with her.
I want to thank so many of you for your kind words of support through all of this, I could not have done it without you all. I will face this coming holiday season with a somewhat lighter heart, knowing that Mom is in the best place for her. As hard as it is, it is the best thing for her. And now I know why I have heard that placement is an "Act of Love."
I wish for each and every one of you the very best of Holidays and may you find peace in your hearts. As we approach the New Millennium, remember that you are never alone, as caregivers we will see each other through the good and the bad times, giving each other the strength to go on, to do the right thing for our loved ones.
God Bless You All.....love, Karen
This article was printed in the "Letters to the Editor" section of The Tennessean dated 12/14/99.
A Mother's love, even while dying
To the Editor:
In this season a little more than a year ago, my mother died. Alzheimer's disease came in the night and took the rest of Mama away after the slow and subtle stealing of her senses.
Some years earlier my father had succumbed to leukemia, and at the time I thought nothing could be worse than this. Then Alzheimer's came to vex and violate Mama, and I knew something so much worse existed, something so bad that I would not wish it on my worst enemy.
The victim of Alzheimer's suffers, but the caregivers suffer as much and more.
Alzheimer's is a stealthy scourge that kills the loved one silently as it kills one brain cell after another, kills one memory after another, kills one love after another, frustrates and kills hope, depletes and wastes all that is near and dear.
It's a thing so diabolical it tests your faith to the point of blaming God for calloused indifference and cruelty in the extreme.
Late one night as I sat with my mute mother (she could no longer walk or talk or swallow food or even sip water without choking), I was holding her hand and saying nonsense endearments to her and singing little lines of old favorite songs and playing the clown for her amusement.
She did not seem amused in the least and only stared blankly at me. Then she put a puzzled look on her face as if to ask, "What are you doing, you silly boy?"
I stopped and stared back at her. I fell silent and began to weep,
pittying my lame efforts at levity and choked with frustration.
I had come to comfort her. Instead, she comforted me. Never before have I known such deep consolation. Perhaps this is why such afflictions are visited upon us.
Epiphanies today are mighty few. Affection so pure and true is rare indeed. Only in a sustained and genuine sorrow do such gentle tears flow, the gentle tears that wash the soul clean and absolute.
Editors note: I called this wonderful gentleman to tell him how much his letter touched my heart. I also asked if I could reprint the letter for use here in The Ribbon. He gave his permission and we talked for a bit. I really enjoyed talking to him. He said I could reprint his whole name and address here, but I'm choosing not to do that. I told him I would print out this newsletter and any responses we get and mail them out to him.
After doing a little digging I found this explanation for vascular dementia at www.alzheimers.org.uk/framstart.htm. It is the web site for the Alzheimer's Disease Society of Great Britain. It is a start of explaining what happens with Vascular Dementia.
In vascular disease the blood vessels bringing oxygen to the brain are damaged. If the oxygen supply fails, brain cells are likely to die. This can lead to:
The symptoms of multi-infarct dementia often have a clear start
date and progress in a series of steps following each attack.
I found yet a more expansive explanation of vascular dementia. The web site address is www.alzheimers.org.uk/is03.htm
What is vascular dementia?
This sheet explains how vascular disease can lead to dementia, either suddenly following a stroke, or over time through a series of small strokes in the brain (multi-infarct dementia or MID). It outlines symptoms, causes and possible steps to reduce risks.
What is the effect of vascular disease in the brain?
The brain is the most complex organ in the body, needing plentiful amounts of oxygen to stay in good working order. Large blood vessels bring oxygen-bearing blood to the brain and a web of tiny blood vessels distribute it to every area. Vascular disease describes a condition where the blood vessels are damaged and the supply of oxygen is at risk. If the oxygen supply fails in the brain, brain cells are likely to die, leading to strokes and possible vascular dementia. This disease is some-times described as cerebral infarction. The effects may be:
Stroke induced dementia
A full blown stroke occurs through a major obstruction or burst blood vessel in the brain. It causes severe damage and often leaves weakness or paralysis on one side of the body. It may also cause loss of balance and disturbed vision or speech. One person in five is left with mental damage or confusion following a stroke.
Multi-infarct dementia (MID)
Very small strokes in the brain may be experienced as 'dizzy spells', but they can damage areas of the brain served by the very small arteries. Over a period of months or years the person may experience a number of attacks, each leaving them more confused and leading eventually to multi- infarct dementia, the most common cause of dementia after Alzheimer's disease.
The effects of one or more major strokes are usually sudden and clear-cut. Diagnosis of MID is more difficult. Family and friends may not detect any obvious events linked to mental deterioration, but see a progressive decline in mental powers. Sometimes, on reflection, they can recall illnesses which may have been minor strokes, or identify a more abrupt change. Scans may show infarct damage in the brain. However, it is not always possible to distinguish MID from Alzheimer's during life, and because both are common diseases in old age, it is possible for people to have both conditions.
Can vascular dementia be prevented?
Several factors increase the risk of vascular disease. The most significant are high blood pressure and smoking. Cigarette smoking is implicated in about a third of strokes.
Is treatment possible?
Brain cells which have been destroyed cannot be repaired, and so the damage done to the brain by a stroke is permanent. However, the brain can sometimes find ways to function around damaged areas, and confusion after a stroke does sometimes improve. People with vascular dementia should be offered a skilled multidisciplinary assessment of their condition through referral to a specialist. This service may be part of the general stroke service or the psychogeriatric service.
Get Well Wishes
Some of you may know that BHostMad, co-hostess of our Caring for Elderly Loved Ones chat has had some major surgery on her arm. Join us in wishing her a speedy recovery. Now, don't expect replies since she is having trouble typing but I know she will enjoy reading notes us.
Hurry back Mad, We Miss You!!
I received this passage from a friend in England...it was so poignant to me, that I adapted it to include our loved ones.
My hands are (small)unsure - I don't mean
to spill my milk.
Wishes to all for the Holidays,
While I was thinking about it I wanted to give you the info on the additional chat that the NM Assn is sponsoring in the evenings, hopefully to get more people involved that maybe work during the week.
They will be holding the evening chat on Sunday evenings, 6:30 PM to 8:00 mountain standard time. You already have the address for the chat don't you? If not it is (http://www.nm-alzheimers.org/chat.html). Lynn from the Las Cruces Branch office and me....yeah me.....will be taking turns hosting it.
Hopefully with this time slot you and others can join us and if it works out they may expand the chat program even more. The more the merrier I say!
Have a Merry Christmas and hope the new year brings us all good things!
Hi. My name is Gilbert Lozano. I live in Lancaster, Ca. (the high desert). I'm retired from Rockwell International and for the past 2 years I have been a care giver for my mother. I belong to a Support Group here in Lancaster. They have helped me so much in getting through these past 2 years. Brenda Avadian, who is the author of "Where's My Shoes", her father's story of Alzheimers, is a member of our group and she put me on to The Ribbon which I in turn forward to my brother and sister. I have spoke at several seminars or group meetings with respect to my experiences in care giving for my mother. I'm considered the Good Humor man because my talks are on, what we call, the "Joys of Alzheimers".
In other words, I talk about the lighter or humorous events or experiences I've had and shared with my mother these past 2 years. My mother is 91 years old, not incontinent, biligual, feeds and bathes herself and with only a cane to steady herself, is very, very ambulatory. Going on these talks have help me also. People probably wonder how anyone could find any humor in caring for an Alzheimers patient. Well, I feel that you can, and have to, in order to maintain your sanity and your blood pressure. It worked for me and my siblings. But, you see, my mother has a tremendous sense of humor. Some time I'd like to share these stories with The Ribbon.
Anyway, Karen, thank you for your quick response and I look forward to receiving The Ribbon. Consider me a subscriber and maybe a contributor. Thank you. God bless you and what you are doing. Enjoy the holidays.
Contentment is not the fullfillment of what you want, but the realization of what you already have.
Dean's letter regarding her husband was very powerful and full of the truths that AZ disease forces upon us without our consent. Although I am still caring for my husband at home, her description of the emotional entanglement and heartbreak are the same. My husband no longer knows who I am although he depends on me for every detail in his life. Sometimes I cannot help him because I do not understand what he is saying. We both try so hard but frequently the communication is lost altogether in garbled words and broken speech patterns. No family deserves this illness. Without the education and support of The Ribbon, I personally would be lost. Thank both of you very much, and thank you, Dean, for describing so well the emotional cost of this disease.
you for your contributions and in bringing us the newsletter, so
faithfully. You have inspired me to be, an even better "caregiver".
Dear Ribbon weavers,
I started subscribing to the ribbon early this year, largely for curiosity, but also in some concern that both my parents told me they feared the other seemed to be fading a bit. It turns out that they are in the greatest mental health now than any time in my recollection of nearly 40 years, and have gained strength as we have worked out some of our past problems and my Mom won her 4th bout with cancer after miserable months of waiting on the damn HMO while the tumor grew.
So, I haven't read much of the newsletter so far, but today I accidentally opened the current issue and so I read some, including the poem at the top of the E-mail bag. I Loved it, and it's the kind of thing some of my E-pals send me, and I forward to most of those I know.
So I sent it on to about 30 friends, most of whom are teachers, healers and caregivers of many sorts, volunteers for activities similar to the Ribbon and support groups. You may get some new subscription requests!
I enclosed my letter to my friends below, to Thank You again.
Well, here it is again, the end of another year. This will be the last issue of Volume 2. It's hard to believe that we've been sharing with each other for 2 years now. Our mail list continues to grow as you recommend us to others.
We would like to say thank you for sharing The Ribbon with others online as well as those of you who print out and take copies to others to read. Our goal is to try to inform anyone we can. Hopefully, this next year we can figure out a way for those who aren't online to communicate with us.
We hope the Y2K Bug won't bite anyone..keeping our fingers crossed..and we can all bring in the New Millennium with good cheer.