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The Ribbon - Care for Caregivers
Volume 2, Issue 25
December 24, 1999

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


Bittersweet Holiday

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.
About that time, Mama looked at me with such compassion, looked at me with a recognition of old that made my heart melt, and then she lifted her arm and gently stroked my cheek with the back of her frail, loving hand.

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.

George B.


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.


From SewingBabe

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.


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:

  • Strokes, which can be fatal or lead to physical disability and mental confusion
  • Multi-infarct dementia, the second most common cause of dementia, caused by a series of small strokes in the brain
  • Subcortical vascular dementia or Binswanger's disease, a rare, slowly developing dementia caused by diseased blood vessels deep in the brain

The symptoms of multi-infarct dementia often have a clear start date and progress in a series of steps following each attack. Some mental
abilities may be relatively unaffected. The person is more likely to be
aware of their mental decline and symptoms may include severe
depression, mood swings and epilepsy.

The risk of vascular disease can be reduced by stopping smoking and controlling high blood pressure.


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:

  • Strokes, which can be fatal but which may otherwise lead to physical disability and mental confusion or both
  • Multi-infarct dementia (MID), caused by a series of very small strokes in the brain
  • A rare, slowly developing dementia caused by diseased blood vessels deep in the brain, known as subcortical vascular dementia or Binswanger's disease.

 

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.

  • The left side of the brain controls the right side of the body and is usually important for language. Stroke patients with right side paralysis are therefore more likely also to have language problems, calling things by a wrong name or using nonsense words. They may also have problems in understanding what is said to them, and answer yes or no to questions they have not understood, which can be confusing for careers.

  • People with left side paralysis (ie damage to the right side of the brain) are more likely to have perception problems, finding it difficult to recognise people or things. Some are only aware of one side of their body, eating food only on one side of the plate, or brushing only oneside of their hair.

  • A person's ability to switch their attention or to do two things at once may be damaged. They may stop walking, talking, or fail to follow a conversation when several people are speaking. They often feel tired and irritable and have a short attention span.

 

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.

  • Symptoms can sometimes be distinguished from Alzheimer's the mental decline is likely to have a clear start date, and symptoms tend to progress in a series of steps following each attack.

  • Symptoms may include severe depression, mood swings and epilepsy.

  • Some areas of the brain may be more affected than others and, as a result, some mental abilities may be relatively unaffected.

  • The person is more likely to be aware of their mental decline than in Alzheimer's disease. This can increase depression. Anyone who has had a stroke is at greater risk of another, and someone with MID is usually at high risk of further damage.

 

Diagnosis

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.

  • Stopping smoking, losing excess weight, taking exercise and reducing levels of salt in food are all ways to help prevent vascular disease and therefore strokes or MID.

  • People at high risk of strokes, including those who have had a mild warning stroke (a transient ischaemic attack), can reduce the risks through blood thinning drugs including aspirin.

 

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.

  • People who have had strokes do better when seen by specialist multidisciplinary teams for treatment and rehabilitation focused on restoring as much mental or physical ability as possible.

  • Specialist doctors can ensure accurate diagnosis so that any underlying disease, such as hypertension or diabetes, is treated.

  • Speech and language therapists help someone make the best use of remaining abilities.

  • An occupational therapist specialising in mental health can help someone cope better in daily life and be safer in the home.

  • In severe cases nursing care may be needed.

October 1997
Registered Charity No. 296645
Company Limited by Guarantee
Registered in England No. 2115499


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!!


E-Mail Bag

From AGwynne50

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.

My legs are (short)weak - please slow down so I can keep up with you.

Don't slap my hands when I touch something bright and pretty - I don't understand.

Please look at me when I talk to you - it lets me know you are really listening.

My feelings are tender - don't nag me all day - let me make mistakes without feeling stupid.

Don't expect the bed I make or the picture I draw to be perfect - just love me for trying.

Remember (I am a child not a small adult )- sometimes I don't understand what you are saying.

I love you so much - please love me for being me - not just for the things I can do.

Best Wishes to all for the Holidays,
Andrea


From wolfsprg@zianet.com

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!

Love
Roberta


From gilloz@hughes.net

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.


From Cwadephill

Hi All,

Just wanted to share with you what my grandkids and I have done last year and this for our uncle who has been in a CH for over 15 years with a stroke.

We started with a clear shower curtain liner. Next we cut out pictures of his favorite things - CATS! ( we cut up old calendars)- then we taped them with clear packing tape onto the shower curtain - we placed them on the backside so they wouldn't get dirty. We also taped fun family pictures here and there. We put cloth ribbon through the holes and were then able to tie it to the rungs of his privacy curtain in his room. We left spaces around the edges and throughout the year have added some of his favorite cards that he has received. This really is an inexpensive gift, one that he has enjoyed all year and delights is showing off . . . he's even named all of the cats - I hope this might be a good idea for you too!

Mina
Nothing the heart gives away is gone, it is kept in the heart of others . . . The Heart Remembers

Contentment is not the fullfillment of what you want, but the realization of what you already have.


From Phydeau

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.


From AZUREE1650

Thank you for your contributions and in bringing us the newsletter, so faithfully. You have inspired me to be, an even better "caregiver".

I hope you and your family's have a healthy, happy, Holiday Season.

Fondly,
AZUREE1650 (aka, Charlene)


From FrogEBear

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.


Friends,

I like sentimental poems like this one. It runs a bit long, but I find it and others like it to be good exercise for feelings-awareness and cleansing for the tear ducts, which I think might even soothe my crusty sinuses. Many or most of we men can use all the retraining in those skills we can find, and I'm sure many women enjoy the workout as well.

I reprinted the entire newsletter following the poem in case you would like to sample it. If you or someone you know would like a subscription, it is free, comes out twice a month I think, and can be gained simply by asking at the return address or looking at their website.

Of course, the poem, at least, is for all of us, not just those caring for people with Alzheimers. In the past week I have heard of the way too early passing of several friends' friends and distant relatives, including my most prolific E-pal who lives in Worcester, MA, and knew 4 of the fallen firefighters pretty closely. So.......toss around some extra smiles and hugs and whatever stirs your heartsong today!!

Bob W.


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.

Peace, Joy, and Love
to all
Happy Holidays and A Very Happy New Year

Karen (KMenges581)
and
Jamie (DrMOM1955)

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