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The Ribbon - Care for Caregivers
Volume 2, Issue 23
November 25, 1999

Thanksgiving, what a great day. Good food, good times, and time spent with our families enjoying traditions passed on from year to year.

Sometimes there comes a time in our lives as caregivers when we wonder, what is there to give thanks for? After our feature article you will find out from the responses we received for this Thanksgiving issue. Maybe if you are feeling thankless at this time, something in what the others have written will strike a forgotten spark inside you.

Karen and I wish to give thanks to you our readers for your support, your input, and all the kind words you have given us over the last almost 2 years. Without you, there would be no newsletter. Thank you, all of you.


Enhancing Life For the Older Adult with Alzheimer's Disease or Other Dementias: Some Gift Ideas

by Stephanie Zeman RN MSN

Most people with AD are fairly mobile and able to participate in some kind of activity for at least a few years. Gifts which promote activities have the potential to improve the person's quality of life, provided that are carefully selected to match the functional level of the person with AD..

The following suggestion have been divided into gifts for early stage dementia, the moderately impaired, and the severely impaired. These are only a handful of ideas from which to choose..

 

Early Alzheimer's and Related Dementia

Most individuals at this stage are: able to communicate fairly well, quite active and need to be engaged in some activity 60% of the day. They are aware of their condition and struggle to remain independent. Gifts that enhance independence or encourage activity are excellent choices..

Games: Simple, but familiar games, such as dominos, large numbered cards, an invitation to a Bingo game( be prepared to watch over your guest's card). Low priced items, but they have potential for quite a bit of enjoyment.

Tickets to a concert, musical, circus. Ball games can also be excellent choices. Any event without a plot to follow is a good choice. For safety either take the person or send along a companion

Taxi charge account for transportation to visit friends ( coordinate plans on both sides of the trip). This gives the person a sense of freedom and independence when they can no longer drive.

Old family photographs highlighting the major events in the person's life. Useful and enjoyable throughout the course of dementia.

Fruit basket or flowers are always a welcome gift.

 

For the Moderately Impaired

Persons with moderate stage AD will have some difficulty communicating, will need help dressing, and be unable to manage most daily activities without supervision or help. Wandering is often seen in this group. Exercise is important but attention spans varies so activities are best limited to fifteen minutes..

Simple to manage clothing. Tube socks are easy to put on correctly. Shoes are available with Velcro closures since shoelaces can be a problem. Jumpsuits with back closures for those with incontinence problems are very good choices.

Materials to sort. Sorting is an activity that most people with AD can enjoy. Try pennies and penny folders, a bag of buttons, or large beads.

Music. Especially the old songs often can bring back wonderful memories. Try to locate stores that have remakes of old albums. Also religious music or music of their country of birth can bring great pleasure.

Tape Church or religious services. Many people with dementia can no longer attend religious services. This can bring a great source of comfort.

Short car trips. See Christmas lights, flowers, seasonal changes.

 

The Severely Impaired

At this level the person has almost no understanding of the spoken word and is unable to speak coherently. Attention span is very short. In this stage of the disease people do not have the capacity to deal with anything but the simplest of tasks. Often times their long term memory takes them into the back and they may believe they are living in the home or community of their younger years..

Photo albums, family pictures, memory books. A gather of pictures from the persons past can help if any memory is still intact.

Pet visits. Most people with late dementia still enjoy the visits of dogs, cats, and other small animal.

Recordings of old music

Cuddle animals or even a lifelike cuddly baby doll.

Video tapes with pleasant sights such as garden, fish tanks and sounds can be soothing.

Hand/body lotions Most people with late stage Ad still derive comfort from touch. Try giving a hand or body massage. ( Do not massage legs, as blood clots can form in this population.

 

These are just a few ideas that may bring pleasure to those with AD during the holidays and on special occasions.

Stephanie Zeman has a Masters in Nursing, specializing in long term care and gerontology in since 1961. She has developed Geriatric Education Resources in 1987 to provide educational workshops consultations and support for family caregivers. This article in an excerpt from her book: Gift Givers Guide. For more information about this guide she can be reached at Geriatric Resources PO Box 7144 Fairfax Station 22039-7144


Reprinted with permission from
Taylor Austin Coordinator of Alzheimer's Outreach © copyright 1998
Alzheimer's Outreach, Where Info & Education Go Hand In Hand With Caregiving
http://www2.cybercities.com/a/alzheimers/index1.htm#directories


Thanksgiving

From DKThomp

Dear Karen and Jamie:
Thank you again for all your work on The Ribbon. You asked for short notes for a Thanksgiving issue so I will contribute my two cents worth.

THANKSGIVING
The upcoming holidays may well be difficult for some of the afflicted and their caregivers. But let us remember it is a time for family and a time to remember better times. I wrote a short poem which tells about the coming and changing season, and all those good things we love to eat; however, it also speaks of the real reason for Thanksgiving which is to remember Him who provides all things for us. Even in our times of strife and grief He is as close to us as our knees are to the floor. So let us celebrate with our families and remember who gave them to us in the first place.
May God bless all of you richly.
In His Great Love
Doug and Ann Thompson

THANKSGIVING
By Doug K. Thompson

Wild leaves that the cold wind have blown.
Now to be covered in snow white as a gown.
People hurrying as the fall chill comes down.
Busy to buy for the holiday all about town.

Pumpkins for pie, a delight to the eye.
Turkey with all trimmings fit for our meat.
Fresh candied yams, oh my, how sweat.
Cranberry sauce so tart the palate to greet.
Honied ham with sauce just for a treat.
Tis a day to show how we love to eat.

Together we come the family complete.
First to worship, a Thanksgiving for all.
We ask for His blessings, to prayer we retreat.
All things He supplies for our banquet hall.

Come, O come, all thankful people come with hymn.
Join in all the good blessings and come let us sing.
With thankful hearts a song of grateful praise to Him.
Living in a land of plenty our thanksgiving we bring.

Thanksgiving a time for family tis true.
Let's come together though many or few.
A time for each family to remember anew.
Thankful for the year we've been through.


From Mtty82

I am very blessed to be able to take care of my mom.She gave her whole life to take care of me after my dad was killed in a car accident and my sister died at 3mo.old . She has always been there for me and even now with AD, she still worries about me. I just thank God that i can take care of her and so far, I do not have to put her in a home.But best of all, I have my salvation to be thankful for and also know that my mom is saved and I Will see her again when the Lord comes to take her home.
Have a wonderful thanksgiving to all of you.
MTTY


From Schweik17

Hi,
I wrote this a while back and thought perhaps it shows some things to be thankful for.

Linda

I asked God to give me new eyes, or at least a different outlook.
I asked God to let me look at the old people in my life and
See something besides feebleness and frailty and decline.
I asked God to let me see through their eyes
To find what still gives pleasure and how life appears to them.

What are the things that know no boundaries of age or condition?
Is the glorious blue of a summer sky less glorious after 80?
Does a vee of flying geese appear less magical?
Does the sound of a favorite melody sound less heartwarming?
Does the touch of a familiar hand feel less comforting?

Age brings so many losses,
It must have some reward.

They live with constant aches and pains of joints long overused.
They lose little details of life with brains no longer sharp at keeping
Information organized and easily called up.
They no longer have the energy for large projects.

Yet all those years of living must give perspective
To lives they live now,
Slightly out of synch with the rest of the world.
Where current events information comes from Oprah
And the parameters of one's world close in to the doctor's office
And the drug store and the grocery store and a holiday visit at a relative's house.

When knowing that statistically your days are numbered,
Do you live each one more fully?
Are you more appreciative of the minutes and events?
Do you consider life goals unmet, or do you change the goals?

And who among us knows the number of his days?
Faith that there is more than just an earthly life
Brings comfort at any age.

It is impossible to know the mind and soul of another
Without walking in his shoes or his life for a good while.
They, looking back, say, "Ah, to be fifty again!"
I, looking back, say, "Ah, to be twenty again!"

So, life is all perspective and vantagepoint,
And the world moves at its own steady pace
And we either keep up or find a corner in which to stay.

There must be sweetness to be found at all ages,
Else why go on?

So, Lord, when I look at my father hunched in his chair,
Sometimes not knowing me, and infrequently knowing what day it is,
Help me to know that he finds sweetness and pleasure and joy
Somewhere in his existence,
Even if it's a place in his memory that only he can visit.

And that my father-in-law who can neither see nor hear well,
Finds good things in his life, too, with an active mind trapped in
A body that no longer serves him.

And that the mothers who live with pain and worry about their husbands
Do find joy in their children's and grandchildren's successes and accomplishments.
And that the demands they make are a small price to pay.

Let them go softly, Lord, without suffering pain and indignity.
Let them go willingly, Lord, to whatever place they've chosen.
Let them go knowing they are loved and will be remembered always
Until their children and grandchildren join them.

And until then, Lord, give them the sweetness of little things,
The joys of day to day pleasures.

And lighten my heart knowing you watch over them and give them their own kinds of joy.


From LauraW64

Hello all...

I would like to give thanks for two things. I would like to thank my sister, Lisa, for being the primary caregiver to my Dad. She is enduring so many things in her life in addition to taking care of Dad. She is brave and patient and generous. I would next like to give thanks for all the support that is available now - there are websites to read and people to talk to, in person and online that give us information and make us feel less alone. Happy Thanksgiving to all!

Laura Walker


In Passing: Those We Must Remember

From VSONeil
dated 11/12/99

This last week, we lost my mother. She had Alzheimers for at least the last 9 years. I was not the primary caregiver, my father and sister were and they kept her at home and cared for her with love and gave her dignity. She was a beautiful woman who taught us all our life lessons when we were growing up ,and continued to teach us life lessons even though she could not speak, until the day she died. This nasty disease robs us of loved ones and breaks your heart slowly as you see them slipping away. Even though she was sick for so long, our memories are those of happier times. We had a beautiful service that was a true celebration of her life, and she will always be loved and missed. Even though I did not participate in the chats, I did sometimes go there. Your news letter, and all the caring people did give me support and I thank you for that. I do wish to have my name removed from the newsletter. Thanks for all that you do. Vickie O'Neil


E-Mail Bag

From Datel123

My Dear Friends,
Have I told you lately how dear the two of you are to me and how this newsletter has been my savior since the first issue. First of all I want to say that through the information you have provided, with your on hands approach, and the experience of others I feel that this information you print is much more informative than anything I have ever bought in a book. Believe me when I say that my library on this disease is quite comprehensive too. I have gone back and printed every single issue. Have taken them to have them copied. bring them home, separate the years, put them in a hard back binder for each year and give them to those in the local group who are still struggling with their loved ones at home. As the new letters come on line I print them out and send the updates.

I have been having a difficult time the past few months struggling with a decision that is impossible to make. This disease is slowly killing me as you well know and I have been advised that its time for me to let go and make a life for myself away from the nursing home. The answer came to me yesterday as I picked him up to take him for his regular check up. I arrived at Happy Harbor at 1:00 as expected to pick him up. There has been such a drastic decline since the night they yanked him out of bed and took him to the ER room for absolutely nothing. I had fired the Psychiatrist on a Saturday night after she had lied to me about slowly moving around his medications. She had put him in total drug withdrawal and he had absolutely nothing for the Sun Downing. When I questioned the home Psychologist and the Social Worker I was told how much better he was, even though this isn't what I was seeing. I was asking the wrong people. I should have asked those who observed him on a daily basis, the nurses. The Saturday night I dismissed her as a treating Physician he had taken all of the things out of his closet and thrown them all the way up the hall from his room to the nurses station. Only after me going down there was the staff able to calm him. The previous weeks had consisted of him packing his clothing, dirty and clean in anything he could find to move. He had been walking the halls for weeks crying for his mother. He hadn't had any sleep in weeks. On Monday I took him back to our family Physician and said No More psychotic drugs ever again and he was put back on his regular medication. The medication was started on Tuesday. That night for the first time in weeks was he able to sleep. When he went to bed that night he turned the lock on the door as he always did but every room at that facility has the same lock and there are approximately 60 rooms. There should have been 60 keys as they were all the same, but when the nurse needed to get into the room to check the other patient john was unresponsive and wouldn't get up and unlock the door. Did I mention that they couldn't find even one key? Well, he hadn't slept in weeks and was totally exhausted. They proceeded to go outside to the window which is at the head of his bed and beat and scratch on the screen until they got him up. At this point he had soiled himself. What AZ patient wouldn't have. They are terrified of anything out of the normal anyway. Then the nurse proceeds to think that because he had soiled himself he had had a seizure of some kind. They got him up, dressed him and took him to the ER here in Baytown. At 1:30 in the morning my phone rang but when the answering machine came on there wasn't a message left. I got up, looked at caller ID to see who would be calling so late, saw that it was HH, called to ask what was going on, only to be told that J had been transported to ER. The hospital is five minutes from my house so I dressed and drove there as quickly as I could imaging the worst. When I got there, John was sitting on the end of the bed with this confused look on his face. All he knew was that they dressed him and here he was. I stayed there all night, they did a cat scan, they did every test known to man, put him in an observation room and the next afternoon wanted to send him back to HH in an ambulance. I told them in no uncertain terms what they could do with their ambulance. I drove him back and that was the most expensive nights sleep anyone ever had on the taxpayers money. Little did I know until I got the EOB from Medicare last week just how expensive it was. I literally pitched a fit. I told the DON at the home that she didn't have one nurse on staff that knew even a fraction of what I did about this disease and this is what an incompetent nurse had caused. The bill was approximately $8,000. We aren't even talking about the trauma at this point that this caused John. This little escapade caused his latest decline. I was down there last week and I went into her office, dragged her to the door and told her to take a good look at what the incompetence of one nurse had caused my husband. There he stood, this man who always prided himself on his appearance, wearing a wrinkled shirt, shirttail outside his pants, unshaven and no teeth in his mouth. Did I cry? Yes, I cried, have cried an ocean of tears since this happened. Has it changed anything? Of course not. He is now truly a small child and I am the mother who he clings to as all small children cling to their mothers. When we got to the doctors office yesterday we had both cried the entire 17 miles from La Porte to Baytown. His tears because he can't understand what is happening to him and mine as I struggled to explain in a way that his limited mind could understand. I have been told that I have to let go or I am going under. My question to the board today was this. Could you walk away from your small child? When you are the only thing in their world that is familiar, how can you say that I have to let go? Well, Girls I need some help on this one.

Dean


From SPKE3

What is Vascular Dementia?

Do you have any information on it?

have a good weekend,
SPKE3


From SewingBabe
in re: Something To Make You Think in last issue

I wanted to comment on this story. Interestingly enough, I first saw it in a complete volume of the Brothers Grimm Fairy Tales. This tale has to be atleast 150 years old if not older. It makes my heart happy to know that long ago people were not ruled only by the will to survive, but the will to love and have their beloved elders treated well.

Karyn


From LTu1022192

Hi,

The Ribbon is a big help. My husband is getting worse fast. It helps to know sort of what to expect as the dementia progresses. I would love to know how others deal with those who are functional but want their spouses to stay with them every minute.

L.T.


From NO900

If only we had a chance to do things differently. Caregivers have that chance. Please try to realize that your loved one with dementia does not know that he is such a burden, his memory is no longer functioning and he can't help the things he says or does. I am having a guilt trip as my patience wore out and I became a nasty person to my dear husband. I wish I had a second chance to let him know that it is OK. He was only in the hospital two days when he went into a coma. I never had the chance to say I was sorry for the way I carried on. So sit back and try to understand you loved one and remember they wouldn't be that way if they could help it. The guild doesn't go away, you have to live with it. You have time to change and please try. I would like to hear from anyone who tries to cope. I know it is difficult but it can be done. I only wish I had the chance. NO900


Happy Thanksgiving To All Of You

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)

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