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The Ribbon - Care for Caregivers
Volume 7, Issue 23
November 30, 2003

www.TheRibbon.com

1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

I sincerely hope that everyone had a safe and wonderful Thanksgiving. It feels as though my belly is still very full. I actually ate two meals and was very thankful for both. (smiling)

I started working on Thanksgiving day. What a blessing that was, one for having a job, and second that this is the perfect job for me. I am being blessed with wonderful people to work with and a terrific place to work.

I am working in an Inpatient Acute Geri-Psych ward. I will give them a bit of free advertisment here by saying it is at Nashville Rehabilitation Hospital. This is a small place compared to many others but I think that is a huge plus. Everyone gets to know each other and we have many opportunities to cross train and learn new things. Everyone I have met so far has seemed to be a truly caring person and that makes such a difference in our patients lives.

I am lucky in that I am scheduled to work 3 12-hour shifts per week. This leaves me plenty of days to be home with Nick and to not have to take days off to take him to doctor appointments. He is having a little bit of a hard time adjusting to me not being home but he is working very hard at it. This is extremely hard on him as he has been the provider and I have not had to work outside the home since we've been together. It is damaging his pride and has somewhat worsened his depression. I am talking to him more about it and explaining that he has worked so hard since he was 15 and now it's time for him to do some resting. He has even cooked supper a couple of times for me. He makes sure that I don't have to do anything when I get home at 7:30. He washes the dishes and makes sure that the dogs have already been fed. He can't do a whole lot due to the arthritis in his shoulders but he is doing what he can. I'm very proud of him!

My schedule is pretty much working Thursdays, Fridays, and Saturdays so that is why this issue is late. Karen and I will get together and make a decision on when will be best to do The Ribbon in the future. With both of us now working we will have to make a small change.

I want to thank each and everyone of you for your prayers and support during this time of schooling and job hunting. Again, I'm blessed with the best and that is you!

Hugs,

Jamie


In Memory of Madelaine Hyde

The Ribbon has been blessed with a monetary contribution. The card reads as follows:

Please accept this check in memory of my mom, Madelaine Hyde. May it help to reach people who need assistance with Alzheimers and Dementia. Maureen

We will use this money to buy the supplies to keep the newsletter going out to our snail mail readers. Our sympathies have been and are still with Maureen after the passing of her mother. We thank Maureen so much for caring about others and wanting to see that the mission of The Ribbon can continue.


A New Award

Your site, The Ribbon - http://www.theribbon.com/, has been selected as a 4-Star Rated Site by chiff.com.

If you would like to review the listing, it can be found at: http://www.chiff.com/health/disease/alzheimer.htm

The chiff.com directory links only to sites that offer a combination of excellent design, information and resources. We do not include any sites that carry pop-ups.

Your selection as a 4-Star Rated Site means that your site is one of the best on the Internet.

We thank you for the work that goes into designing and maintaining a site that offers a wealth of information to the Internet community.

Once again, thank you for providing a resource of the highest caliber and...

Congratulations!

Margaret Chiffriller,
Editor
chiff.com
Your Guide to the Best Sites
http://www.chiff.com/


My Heart is Full

Kenneth M. Lovegren 1917-2003

My heart is full of thoughts and words but my brain scrambles them before my mouth gets a chance to express them.

I desire dignity and respect, but I receive looks of disdain and pity.

I still have goals to reach and dreams to fulfill but stumble and shuffle when I take steps toward them. I can't be the father, mother, sister or brother I planned to be, instead I've become a child again.

The simplest things that other adults take for granted, I can no longer accomplish -- driving a car, tending my garden, writing my name.

I've a lifetime of knowledge and experience to share, but It's trapped in the tangles in my mind. Look deep in my eyes; I'm pleading with you not to ignore me or avoid me but to reach for me while I'm still here.

I may not remember your name or the title or our relationship, but I know I love you and desire to see you and hear you and let my heart touch your heart.

Please help me remember the good times while I can, and just let me hold your hand when I can't remember. Listen to all the declarations of love that I never made out loud and know that I still love you.

My cousin found this in our local paper, The Roseville Press Tribune. It is dated Saturday, November 22, 2003. It is an obituary, but it really touched me and I think it will you as well.

Always,
Linda
The Gathering Place @TheRibbon.com

http://www.theribbon.com/GatheringPlace/

EMail: Linda@theribbon.com


A Different Kind of Grieving

This past week I received a phone call from a dear friend up north, 1200 miles away. We have been friends for over 35 years and have seen each other through all kinds of joys and pain. Now matter where I have roamed, and I have roamed wide and far, Cheryl is the kind of a friend that even if years have rolled by, a telephone conversation always picked up as though we had talked just the day before.

In recent years our conversations have been devoted to our respective mothers....both afflicted with Alzheimer's Disease. My mother was diagnosed over ten years ago and is still ambulatory, verbal and social. Evelyn, on the other hand, had none of those abilities after just five years. The end came for her last week.

A couple of nights ago, Cheryl and I talked on the phone. After the funeral, after the house cleaning, after all the things that we do when we lose a loved one. We talked about her Dad, now left to face his solitary future without his love of 61 years. And we talked about how Cheryl was coping with this loss. She said everyone in the family was concerned because she wasn't crying and expressing her feelings of loss.

And that was when we both decided that for those of us who deal with AD the grieving is different. For us the grieving begins when we hear the diagnosis, when we realize we are going to lose our loved one slowly, by degree. We see that when the personality changes and the loved one acts or responds in ways we've never seen before. Eventually we feel that the loved one we have known all our lives becomes someone else. And, most of the time, we are thankfulwhen they are finally at peace.

Both Evelyn and my mother, although different types of women, had many similarities, perhaps due to their time of birth. Both full-timehomemakers, married to GI's of W.W.II, four children. Strong women who dealt with a very changing time. Both caring and, to each of us, a best friend. But along the course of the AD, those women have been lost. For Cheryl and I, the tears have come long ago for the loss of that friend. These strong, sometimes vain, women suffered the indignities of a disease that cut at the core of who they were. Tears were shed then, with that realization. The mothers we knew our entire lives no longer existed. The roles reversed. We cared for them, made decisions for them, watched after them like they were toddlers. A painful task.

Each of us must face a loss of a loved one in our own way. Caregivers and family of AD patients have to deal with a different sense of loss. But perhaps the final blow is the kindest one and a feeling of relief.

Karen


Two Hearts Broken

Cancer and Alzheimer's, a one-two punch.
Either one is way too much.
Her loves were always home and family
and to keep her there, she counted on me.

Being put in a home was her biggest fear.
I promised, never, for many a year.
No clue was given to the size of that chore.
Performing my duty revealed so much more.

Alzheimer's hit her and she got much worse.
I did not know how much she could curse.
Lying, stealing and forgetting to dress.
I tried so hard to give her my best.

Shock took hold when they said I had cancer.
Please, dear Lord, give me some answers.
Anger, guilt and tears fill my heart,
when I see her cry, it rips me apart.

Now my promise, I can not keep.
Each week when she leaves and begins to weep.
Cancer and Alzheimer's have taken away her home
for she can not stay there all alone.

Marcia Arnold


Links

ThirdAge - Health Newsletter - Around-the-House Help for Alzheimer's Patients

Scientists at Intel's People and Practices Research Lab have devised an array of technologies that could help people compensate for their memory deficits while monitoring their movements in the home. Intel employees are testing the prototypes in their own homes to iron out any kinks. Eventually, modified versions of these four systems will be installed in about three dozen households across the nation.


TIME.com: Alzheimer's In The Family -- Dec. 01, 2003

This article is in this week's Time Magazine. At the end of the article, on page 2, there is a phone number and an e-mail address for families with 2 or more living siblings who have AD. This could be very helpful in the search for a cure. Participate if applicable.

You could make a difference.


NEW Handbook for Long-Distance Caregivers Released
AScribe 24 (AScribe Newswire) -- Family Caregiver Alliance announces the release of its new Handbook for Long-Distance Caregivers, a guide for families and friends ...

Smilingly Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Tel: 661-945-7529 (California)

Speaker and Author, Finding the JOY in Alzheimer's:
When Tears are Dried with Laughter
(JUST RELEASED!!),
Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times
and "Where's my shoes?" My Father's Walk Through Alzheimer's
(also AVAILABLE in Audiobook, the German language, Die Zeit mit dir,
and "¿Dónde están mis zapatos?" in Spanish and NOW in Korean).


The Guardian - Oregon Man Kills Wife, Man and Himself

How did this happen? How did he get the gun? Amazing story. Will be watching for further details.


Email Bag

Looking for some specific suggestions and INTERVIEW QUESTIONS AND TECHNIQUES. Mother has been living with my husband and I for 3 or 4 years now.... No breaks... (brother and sister choose not to help) I need to hire someone to assist one day a week or more. BUT.... I need help in how to interview.... questions to ask..... What do I need to know to start this process... Please respond to my e-mail if possible... My time is so limited that I don't get to read guestbook often..

Thanks Reece9533@aol.com


was just reading your site, wanted to ask a question. I work at a research marketing firm in phoenix. we need caregivers of alzheimers patients for a focus group on 12/12. the group lasts one and a half hours and each person is paid 100.00. didn't know if you might want to pass this on to anyone. you can call to check us out or just ask questions at 602-381-6900.

thanks,
Marybeth

From mporreca@plazaresearch.com


I am on and off the AD and dementia boards for about three years. I have met some wonderful people there like Nanny Dean, Barbara ,Sue, Vickie , Phyllis, Felix and more.They all have heard the story of my husbands dementia, which actually is a bad cocktail of mind altering medications induced. There was no reason for him to be on that poisonous mix for six years (Imipramine and Prozac, Depakote and Valium). For more when two years he has been off this meds. Here is the point I am trying to make. The MRI before being taken off meds was showing atrophy in the front lobe and has spread into the basal cycterns, after taking him off meds, the latest MRI was showing NO WORSENING. I am a retired RN and I find it significant. My husband is 54 and in the 17 century it would have been called poisoning of the brain. His condition is persisting. The point I am trying to make here that maybe a second opinion, a neurologist with specialty in memory disorders would be helpful plus we live in the world of brain scans and sophisticated blood tests and no young person should blindly accept the diagnosis of AD. If toxicity caught on early and eliminated the process could become reversible or like in my husbands case it might stop the progression.

Have a great day, Mary

From mcv947@aol.com


I just recently had to place my mother in an assisted living home. She is 82 and having a hard time adjusting. I need some help with dealing with my feelings of guilt when she cries and says to me "take me home".

From maebeetomorrow@hotmail.com


re: your newsletter-it's been 2 years since I watched my mother slip away, and the reality that life is a slim thread upon which we walk came back to me a few weeks ago when my husband had a heart attack at 2 AM. (Can someone please tell me WHY this always happens early in the morning???) I have two close friends whose mothers are in extended care homes, and your newsletter and articles are always a comfort to them, since I relay the information to them with my low, calming voice. (I've been told it's calming by one of them-I guess it's true)

The weird thing is that they'd NEVER read the newsletter or website by themselves-they're macho men in their 40's, so I impart the information to them when we talk once or twice a week. They think I'm a wonderful, caring person who can feel their pain (and whatever else they're feeling that they don't want to admit to), and with whom they feel comfortable sharing their thoughts.

And that's what it's all about-us banding together as the souls that are left when a loved one is slipping away. It's kind of funny, really-this older shorter lady, "bolstering" up these two large guys! But that's what I do-offer comfort. And I take comfort in return, knowing what I do is RIGHT, and validating.

Thank you SO much for helping me, help them! (and understanding for myself how truly precious our short span of life on this "mortal coil" is.)

Smooches,
Lynne
Brea, CA.

From Schmink45@aol.com


Hugs and Peace,

Karen and Jamie

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