Issue 23
November 25, 1998

We sometimes get so caught up in caregiving that we forget to count our blessings. I hope you will take this Thanksgiving time to realize how many blessings you really do have. Write them down so you can refer to them during the hard times we all face.

Since this is our Thanksgiving issue, we will not have a "main article". You will find the responses to our Special Issue, poems, and lots of e-mail.

We do have a Special Question for you to respond to. We feel this may help others understand what caregiving means to us. Here is the email that prompted this question:

We are to appear in court sometime the first of 99. The last time we were in court in Sept. the court appointed attorney had never heard of the word Caregiver, and he asked for a definition. I tried to explain in simple terms what a Caregiver meant to me. I have been making copies of the Ribbons and giving to those in our area that are in need of advice and comfort dealing with Alz. Would you and Jamie think about an issue concerning in short terms what some people define Caregiver. I am going to give the court, and court appointed attorney all issues of Ribbon that they may understand the disease and what victims and family members are dealing with. Hugs, Carol

From jwr50@teleclipse.net

Ok folks, we had such a tremendous response to the Nursing Home question and I think this one calls for another effort on your part. The question is "How do you define the term 'Caregiver'?"

From JoAnn714

Posted on The Ribbon website

This is wonderful. I took care of my father for 2 years until I had no choice but to put him in a nursing home. I visit at least twice a week. Thought you might like the poem that I wrote, which I include here.

THE VISIT
By JoAnn714 2/16/98

A visit to the nursing home with many people here and there
A gray-haired man is all alone sitting quietly in his chair
He sees my face, I try to smile and I sit close by his side
I try to chat or make him laugh but his bewilderment he can't hide
I tell him of my love for him and he tells me he loves me too
Then he looks away and he just stares and I wonder how can this be true
For those who wonder why I cry it breaks my heart you see
To look into those empty eyes where my daddy used to be

Responses to Special Issue

From RNMarge

Although I'm not able to join in the chats, I read every word in the Ribbon & I waited for the Special Edition because after almost 5 years of caring for my Mom, I'm on the brink of making the awesome decision. I can't begin to describe how much the Special Edition helped me! Everyone's comments were "my" comments. Everyone else is feeling what I am feeling. Everyone else is experiencing what I am experiencing. No matter how different we are, it's amazing how much we're alike. Thanks to alz, I guess.

Thanks to you & Jamie for the terrific job you are doing with the Ribbon. I'll always be grateful to both of you for all the help.

Sincerely,
Marge

From Mar rob 1

Thanks so much for this special issue...you see we just placed my mom in nursing care. She is not happy there and cries often. This is tough on us. Being a stubborn lady, she will probably never adjust. Still I feel this is the right decision. These letters have been a great help to me. (My mom is the one I wrote earlier about who would not leave her home)

Sincerely,
Marlene

From SewingBabe

After reading the special issue I wanted to say THANK YOU to everyone who shared their stories. As an adult day care worker, I see the torn feelings family member go through in trying to make a decision about what to do. Thank you all again for sharing you hearts and minds about placement or trying to make the decision.

SewingBabe aka Karyn

From GivinCare

It is timely for me to read this Special Issue. I am facing the one year anniversary of the day I placed my mother in a nursing home. She died 3 and a half months later, due to factors she would have been less likely to encounter had I been able to keep her at home. I was running out of options for help at home, and had been unable to get Hospice services for us, although she fit their admissionc criteria to a "T".

Placing her in the home went against our family values, and was every bit as difficult for me (and her) as her death became. Looking back, I wish I could have found the strength to keep her home, fight harder the Hospice services that may have extended our time together.

I do not see nursing home placement as an inevitable end to this disease.

To paraphrase the song, "Caregiving is like a rodeo.. the trick is just to make it to the bell."

sign me:
Very Sorry I Made That Decision
(Debi, Boulder, Colorado)

From BELL OF WV

I can't thank you enough for todays issue of "The Ribbon." It helped me so much, as I placed my mother in a nursing facility in July. I see now that everyone goes through all the guilt and pain that I have gone through by having to make that decision. It's the hardest thing I have ever had to do and I feel, even when people tell me that I did the right thing for her, myself and my family, that it was a very selfish thing to do, and why should I put myself first and why should I do it for ME? She is my mother and is a very important part of my life, as well as the rest of my family. But, I now understand, keeping her here with me and trying to do it all, was just hurting all of us. Now I don't lose my temper with her, which would have gotten worse in time. I now know that the nurses can do for her what I was unable to do, so now when I visit her we enjoy each other. She objected at first and wanted to come home, but she was not really happy here with us or even in her own home. In her state, she just wants it the way it used to be in the past, which can no longer be. I did try bringing her back, but it only lasted a month until it got serious enough that I had to return her. She was getting up in the night and falling and I was unable to lift her and she reached the point one night that she wanted to leave and go where someone could help her. So, I'm beginning to understand the seriousness of AD now, and that you reach a point that you have done all you can do and you just have to leave the rest in GOD'S hands. I would like to thank everyone for their letters and helping me come to know that I did what I HAD to do.

Vivian (BELLOFWV)

From Alzjane198

OK you guys finally did it!!! You made me cry. Now don't get me wrong, it was a good cry, and released a lot of emotions. You see next month it will be 17yrs, she has been at peace and with Dad. But there are times, even I say why? Why did God have to take this women that worked her fingers to the bone to give me what I needed, and never had a mean thing to say about other people. Me that is a different story. LOL

I am so glad you did this special NL. It was wonderful. I am sure it helped the one's that wrote, and especially the one's that have yet to go through it.

Love you both,
Jane

From WilloRain

Hello Everyone,
Well, through some pushin' and persuadin', someone has talked me into sharing another of my Poems !! I chose this one mainly because it always reminds me of all the *HUGS* and Help you have so graciously given to me, especially in my time of needing support. I consider you my second Family, and though I may not be able to visit the room as often as I would like, I know in my heart that you will always be there. So, I Thank You, My Friends ! *HUGS*... Happiness & Good Health to All !!
"Willo" ..... Loraine

Links

From BHostRidl

Please include these in upcoming newsletter......they are most important I feel . One gives out helpful info (you can even call them for a pamphlet) and the other lets you look up nursing homes anywhere in the U.S. and check out their rating.

Thanks

• HCFA-Nursing Homes, Home Page
• Alzheimers.Zarcrom.com
• CareGuide - Child and Elder Care Directory

From Psears 123

• Free Medication Programs

Dear Friends,
This web site is to help low income people gets medication. If you can't use it, maybe you know someone that can. Have a good day! :)

Love, Paula

E-Mail Box

From JayBee

Issue 20 of the Ribbon is packed full of extremely useful information. I have sent much of the info to my daughter who is, with all the siblings and wife, wrestling with the fact that her father in law is having serious memory problems.

You are performing an invaluable and treasured service. Many thanks.

From AZMcDougal re:Issue 21

God bless you for this beautiful issue.. You are there for the hurting, and you will never know how much this means to know we aren't alone, and that there are others walking the same paths we walk.. God be with you.. Your newsletter is so appreciated.. Dee

From Moose75mom

Dear KMenges, We were to move my 85 year old Mom who has Dementia into a New Facility thisNov.9.. Yesterday my sister gets a call from the facility. Brighton Gardens in Northville Michigan (Marriot) that they will not be able to meet my mothers needs. She is presently on in home Hospice where she lives now. When we put Mom on the list to move in there last July we explained her situation to all involved in detail. They are scheduled to open this week. We have been incontact with them over the past several months numerous times. This facility is to have a wing 24 beds for residents with Alz. and Dementia. so they say. We have toured the facility attented meetings for orientation for families. We needed to give her present residence a 30 day notice of her moving. Brighton Gardens was going to do a evaluation on Mom but when I was trying to organize the appointment for it the director that we had been working with said to me she really didn't think it would be necessary at all. she told me she would waive the evaluation. So go ahead and put your 30 day notice in which we did. Our Hospice Nurse has gone to Brighton Gardens and met with nuring staff and directors to brief them on Mom. they told her everything looked good and would work out any problems that would come up. Now only 12 days before my mother is to move in they call out of the blue and tell us she can't live there!!!

This is a place that advertises this wonderful care for people with this horrible disease. what they should say is that when a resident gets to bad you better look elsewhere to live. My sister and I are contacting an attorney!!! Meanwhile we have been checking area resident Hospice facilities. The cost is quite steep!! But we will have to take it in order for our Mother who deserves the best to spend her last days, weeks and months in a well staffed home!!

I'm writing you to let you know of this problem with Marriot and their "great" place they advertise. Please let others know that this is the type of place that when out loved ones get bad and they all get to that point this place won't want anything to do with them. Even though they tell you otherwise to get you in the door when they are still in early stages!!! We are so overwhelmed it is very hard to deal with. Please tell all you know to stay away from this orgaization!!!!!! We are contacting the area Alz. Assocaition to make a complaint also newspapers and the headquarters of this orgaization. They should stay in the hotel business and not make promises they have no intention of keeping!!!! Thank You for listening!!!

Sincerely Maureen

From CNORRNFA

I finally got my mom into a daycare and it has really helped to relieve some of the stress here. I never would have had the courage to just "DO IT" if it wasn't for the encouragement I received from two wonderful people I met through "The Ribbon". Thank you again for all of the good wwork that you do. God Bless Psears123 and LIZA513 and all of you others out there who are struggling with this awful disease.

Dianne

From PHOTOLJT

First, I apologize for taking so long in addressing the issues CKNOX0911 raised in the 9-18-98, Issue 18 of the Ribbon. Second, before I jump off the deep end, I must compliment you both on the outstanding job you do in bringing us information. If it were not for your deligence, we would probably never have access to all of the wonderful information. Congratulations on an outstanding job to the both of you. Now on to the matter at hand, the issue CKNOX0911 raised in her note you published on 9-18-98 concerning being able to give her mother the kind of relief that had been afforded to her faithful companion Trixie (CK's champion boxer). CK has given me permission to foward part of my note to her for use in the Ribbon. The following is what was written to CK on 9-20-98:

"First, as part of the chat rooms, I must apologize for us. How rude and tacky that folks will not let you voice your opinion without getting beligerent (sp) with you. I thought we were a much nicer group of people than that. Second, I could not agree with your thoughts more. In my particular situation, you mayremember that it is my dad that has alzheimers and my mother is the one doing the caregiving. My mother is not a very strong-willed person (well, at the wrong points in time she can be) and this is a very difficult situation for her to deal with. As you know, it is virtually watching your loved one die in front of your eyes. I personally am to the point that my dad is not with us anymore; I mourned his passing about a year ago. All this person is now is a man that is withering away and getting more confused as it is happening and my mother more upset as she can't control the situation. I sat and cried as I read your note. One, at the loss of your faithful friend, and two, for the helplessness you feel in not being able to show as much compassion for your mom as you did for Trixie. We all know this is something that cannot be reversed, so why put everyone involved through so much torture. I am a firm believer in Dr. Kevorkian (sp). In our case, my dad has recently (4 years ago) had a quadruple bypass. The only kindness I can hope for is that his diabetis takes over and sends him to relief as quickly as possible. One solice that I do have; there is no in-fighting. I had so hoped that had turned around for you and your brother. As far as group goes, you don't want to be in this alome, so give us another chance. We do care about all that come to the group!"

I have recently returned from a trip home to my parents and it has only furthered what I wrote to CK. My mother is much more stressed than when I was home 4 months ago and her health is now becoming a major concern. And my dad still thinks the porch swing I took down 2 weeks ago for the winter is stolen. I made the statement to my brother as he took me back to the airport that as far as I was concerned, I had mourned Dad a year ago, and surprisingly in a telephone conference just last weekend, he agreed. It comes to a point where you have to look at the quality of life. To be perfectly honest, yes my father is still healthy, but where is that quality? He's up virtually all night, eats breakfast and sleeps all day. This is a man who would not be caught sitting around doing nothing as he had too much work on the house to do. It took him over an hour of repeated questions about how I was getting to the airport. He could not come up with the words for the city I would be flying out of nor the mode of transportation. And what is even sadder, my father asked me just last Saturday when I was coming home? So again, I ask where is the quality of life? It is virtually non-existent!

For what it is worth, that is my two-cents. In addition to agreeing with CK's note, I think it is worth mentioning that we all do have opinions and when we are in the chat rooms, even though we may not agree, we need to respect that person's feelings. After all, we are all going to the group to be able to vent and gather strength from each other! Thanks for listening!

Linda

From Currby4

i was hoping maybe someone was dealing with a similar situtation.............

my mom has been tilting to the right. a couple of months ago it was occassionally, now it is everyday. i took her to the dr. and she ordered a cat scan thinking maybe she was having a stroke or mini strokes............she wasn't. also she falls so fast asleep sitting in her chair. this and the tilting i am afraid she is gonna topple out of the chair. is the tilting part of the alzheimers?? a stage?? help??? please.........

thank you,
laura

From LBueno9843

I was just wondering if anybody could shed some light on seizures. Are seizures common in alz/dementia patients?

The reason why I'm asking is because my mother, a dementia patient, had a seizure which resulted in complications with her lungs. She recently passed away as a result of this complication. She had never had a seizure before and we were not aware that she could even get them. The doctors never mentioned the possibility of her having seizures. Til the very end, the doctors seemed stumped with her condition and called it a "seizure disorder." She had had a cat scan of the brain twelve days prior to having the seizure and the neurologist had told me that the results were normal within the dementia and that there was no significant change from the prior scan.

I'm just wondering if we didn't do something we were supposed to or if we didn't see any of the symptoms. Also, could the seizure have been a side-effect of the medication she was taking at the time? The only medication she was on was "Zyprexa." Any information you can provide me on seizures is really appreciated.

Sorry I haven't been back to the support group but I haven't really been up to it. Would like to continue going though. Thank You.

From CM41620

Thank you... the "Alzheimer's Is" was very much our life. My Grandmother lives with us and it's so nice to read those things (like towels in the drawer) and remember that we are not alone. My heart breaks for everyone experiencing this horrible disease, I know we can still give them love and life, but it still makes me terribly sad (and afraid of my own future) sometimes. Thanks again. Cari

From Tennisky

I wanted to thank you for the wonderful information and the airing of thoughts and emotions that each issue of The Ribbon brings. My dad was diagnosed 2 years ago with Alzheimers. It began with forgetfulness and has led to hallucinations, weight loss, temper tantrums, fear and stomach problems.

He goes in for testing next week, because they found blood in the bowel. We now face the great possibility of cancer. I'm not sure why I'm writing this. I guess I just feel the need to share this with those who know and understand. May God bless each and every one of you out there who live with this everyday.

Paula

From Mtty82

I want to thank you for this article. This has been very helpful. I enjoy the letters very much, I am the soul caretaker of my mom and it is very hard. I just thank God I have him to go to and also I have two other friends on the net I talk to.

God bless you for putting on this newsletter.
Ann

From BELL OF WV

HEY...I WAS BORN ON FRIDAY, NOV. 13. SO I'M NOT SUPERSTIOUS ABOUT IT... :)
GOOD DAY FOR ME.

VERY NICE NEWSLETTER..I SENT IT TO MY DAUGHTERS HOPING IT WILL HELP THEM EXPLAIN MOTHER'S ILLNESS TO THEIR CHILDREN. WHEN MY GRANDSONS ARE WITH HER,,THEY ARE VERY UNCOMFORTABLE AND DON'T KNOW WHAT TO SAY..SO MAYBE THIS WILL HELP.

THANKS FOR A GOOD ONE,,VIVIAN

From SQuinn1296

I find that I am going through so many different feelings in dealing with my husband's Alzheimers. In looking through some of the things I have written during the course of it all I came upon these thoughts and wanted to share them with anyone else who is feeling "grief" while their loved one is still here. I know I usually try to be upbeat, but reality is still there, and feeling blue is part of that reality.

Each day that passes leaves in its wake your memories and mine, like a boat racing through the water distancing itself from the water behind. We were the boat. Now we have been thrown overboard and have landed on opposite sides of the wake, falling forever farther behind the boat and apart from each other. We will ripple outward and fade to nothing.

Karen and I would like to give our THANKS to you, The Ribbon readers. We do appreciate your input to this, your newsletter.

For those who are traveling this holiday weekend, please be safe.

Happy Thanksgiving,
Karen (KMenges581)
and
Jamie (DrMOM1955)

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