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The Ribbon - Care for Caregivers
Volume 7, Issue 4
March 3, 2003

www.TheRibbon.com

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

I'm jumping for joy here today. It is a sun shiny day! This is the first sunny day we have had in 17 days. The gloomy days have really had me even more gloomy than I should feel.

Since our last visit, we have enlisted Hospice to help care for Mama. Her heart is so weak that even the diuretics aren't helping to pull the fluid off her body. She is 5 ft. 2 in. tall and got up to 204 pounds. This is what happens with Congestive Heart Failure.

When the nurse first came out for her assessment last Thursday she told us that Mama wouldn't last long...maybe 2 weeks. Her lungs and body were full of fluid and Mama had started having seizures. She has been on Dilantin since her head injury back the end of December and has never had a seizure before. The nurse put her on Valium and that has stopped them.

What is really bothering me is my husband's reactions and responses. Now he has early Dementia of some sort but this really brought it home. He thinks I should still have dinner on the table on time, have the house clean and spend plenty of time with him. When I asked him to hug me because I was hurting inside, he did give me a half hug and told me to stop that (meaning hurting). I think that is the hardest part. I do not have a supportative husband through this and that is very hurtful. I know this is the dementia working but it doesn't make it any easier.

I will be including many of the letters you all sent in answer to my question in the last issue..When do we say "enough" and let nature take it's course. I got so many wonderful replies and have implemented many of your suggestions. I say Thank You from the bottom of my heart.

Jamie


In Passing: Those We Must Remember

It is with great sadness that I write to tell you I received word from BettyP telling me her Mother passed away on February 18, 2003. Betty said that things were difficult for her Mother. The family was with her for the last 11 days, taking shifts to be sure someone was always there. Betty states she now knows how others feel; there is a huge emptiness. Betty knows that on one hand her Mother is in a better place, but then missing her and not being able to have her near is hard.

Please join with me in expressing your thoughts and sympathies to Betty and her family during this very difficult time.

Love Always,
Linda
Linda@theribbon.com
www.TheRibbon.com/GatheringPlace


I just wanted to drop you a line and let you know that my beloved mom, Mary Korpi, passed away quite suddenly on Friday Feb. 21 at eight am. I still cannot believe that she has gone.
I received a call from the nursing home at about twenty to four telling me that mom had suddenly taken a turn for the worse...was almost comatose, barely breathing, etc. etc. I prayed that I would make it there in time....God was gracious enough to allow me four precious hours with her before He took her home to be with Him.

Although she was totally unresponsive and never moved except for her labored breathing and the violent final twitches of her mouth before she took her last breath, there was no doubt in my mind that she knew I was by her side...telling her over and over again how much I loved her...kissing her face ever so gently...telling her that it was ok if she went home to Jesus, altho my heart wanted to scream for her not to leave me here without her...

She died about two minutes after she received the last rites from a Catholic priest who was kind enough to come to her side. There was no doubt in my mind that this woman who so feared death had finally seen the face of her God because she left this world without any sign of struggle...even tho her eyes were closed by the time I got there,she still looked so peaceful at the end.

For so long I had hated God..for what He had done to her, and I had totally lost my faith in Him...but that morning this beautiful, precious woman once again gave me a most wonderful gift...she renewed my faith in God...took away all of the bitterness and anger which had been eating away at my heart...she let me know that there is indeed, a heaven...that there is indeed, a God....what a wonderful last gift I received from her!
She will be directly cremated so there will be no services...her only wish was that a priest be there at the end. We had our own memorial service at the home...for four hours people came in and out to pay their last respects...all of us in shock because we never say any hint that death was so near.

Two of the residents sat with me and waited for over an hour until the undertaker came and got her. I just could not stop touching and kissing her soft skin. I walked her out the door for one last time...my mother, my best friend, my entire life...

I have now decided that I will be cremated as well,and I pray that some kind soul will be still around when I die and that they will scatter our ashes together.....perhaps somewhere peaceful. Then we will be together again forever--if only in the wind.

My prayers and thoughts shall remain with you all as you continue the journey with your loved ones.

God bless you all...
Ellen from Detroit, MI

Ellenbabe1@aol.com

PS. I am sending along two poems I wrote recently for mom and will include them as attachments in Word...I hope that they will go through to you. The poem "In this Room" was framed and put by her bedside...


In This Room

In this room lives a wonderful woman named Mary
Who once was full of life but is now so wary...

Once so full of life and zest,
Now she's so quiet and longs for rest.

In this room lives a wonderful human being,
The most devoted loving mother the world has ever seen!

Please don't judge her spirit by what you see,
For she is still so much alive inside to me.

For Alzheimer's has robbed her of most of her wonderful wit,
Instead of cracking a joke all she can do most days is now sit.

In this room she struggles so valiantly to speak,
For conversation she still longs to seek.

She is thee most important person in the world to me,
She gave me life and still fills it with so much joy, you see.

Please fill her life with tender touches and lots of laughter,
For joy not silence is what she needs and is still after.

If you get lucky every once in awhile you might still see,
Her beautiful smile and love for life she shows me.

If you find her afraid please hold her until she is calm,
And gently assure her you will fix whatever that is wrong.

And if you should ever see her cry please wipe away her tears,
Please do your best to calm and ease her fears.

For in this room is my entire world, my mother, my best friend,
For the bond and love we share will never end.


Dedicated to my beloved mother -- Mary Korpi --


Snippets from the Valentine's Day Chat

in Memory of Alzjane198

Dear TheRibbon and The Gathering Place Friends:

We had a wonderful chat last evening remembering our friend and mentor, AlzJane198, Jane Levy. For those of you who could not attend, I "gathered" some snipits from the evenings chat so you wouldn't miss anything. I hope you enjoy it!

PHOTOLJT: thought i would copy to you what ann had to say
Jamie-DrMOM1955: please do Linda...I miss Ann
PHOTOLJT: I remembered when Janalee, Mom and me were making the wooden banks. Jane was the first to pipe up that she wanted not just one, but two.
PHOTOLJT: We made them to her specs and sent them on, and she made us feel so good about how they'd turned out.
PHOTOLJT: I'm happy, looking back on it, that she got one of the ones that Mom had a real hand in. I also enjoyed our phone conversations -
PHOTOLJT: I think we spoke twice - and I naturally had to kid her about her Lauren Bacall voice.
PHOTOLJT: She was a wonderful person who made many great contributions to our lives.
PHOTOLJT: and she signs it ann
Jamie-DrMOM1955: Awww so sweet
marcia: how sweet
PHOTOLJT: i want to get a favorite jane memory here
KMenges581: go, Linda
KMenges581: let's hear your story
PHOTOLJT: oh there are so so many, but i do believe the one i had the most fun with
teen: i have one..."go to bed" .... lol only one i took it from
PHOTOLJT: was when jane received the award for the caregiver of the year for the nm alz chapter
PHOTOLJT: and when anyone new came into the room i would tell them she had won the honor
KMenges581: LOL, teen...she always worried that we didn't get enough sleep..
KMenges581: and she was right..
PHOTOLJT: and the more i told it, the longer her horns got...
Jamie-DrMOM1955: Yes, that Go to Bed instant message we would all get Teen...what memories
teen: and she was right
Jamie-DrMOM1955: i can see her now Linda those danged ol horns
KMenges581: she hated to be told what a wonderful job she did
Jamie-DrMOM1955: I will never ever forget the time my mom had the emergency arteriogram and when she came home from the hospital she started bleeding out. Jane and Chuck both talked me through that horrible time.
Jamie-DrMOM1955: If it hadn't been for the 2 of them I wouldn't be the strong person I am today
KMenges581: I remember Jane talking me out of smacking my siblings silly...
KMenges581: she had a hard sell on her hands too, I'll tell you...
KMenges581: man, I was so angry...
KMenges581: she calmed me down....
KMenges581: always
PHOTOLJT: well someone had to think straight for us
Jamie-DrMOM1955: amen to that one Linda
KMenges581: God knows we couldn't think straight...
teen: got that right linda
PHOTOLJT: some one who could look at thing objectively
KMenges581: she had the experience, knew what we were going thru
Jamie-DrMOM1955: I have always felt so blessed to have had Jane and Chuck be a part of my life...
teen: me too jamie me too
PHOTOLJT: chuck, what about you any special thoughts?
Chuck: Today I have many tho'ts some happy and some not so great...However I am blessed to have friends like you even tho we don't always get together
teen: oh the thought of linda and chuck in the same room.....
PHOTOLJT: oh that's right
teen: sides will hurt for laughin
KMenges581: ROFL
Willo: Teen LOL
PHOTOLJT: we would have a good time...
KMenges581: what a thought!
teen: lol chuck that she is
PHOTOLJT: y'all thought mary and i were bad!
Joyce: We;d have to bring some of that duct tape to keep our sides taped up, Teen
Willo: double trouble!!!
KMenges581: Triple trouble.....where is Mary anyway?
teen: lol joyce
PHOTOLJT: karen, she had to work for the flower store it is always bad around valentine's day
PHOTOLJT: she wanted to be here
KMenges581: oh, of course
KMenges581: tell her we thought of her and we missed her
teen: one across the street been busy all week
PHOTOLJT: they had to work until midnight last night getting walkin in arrangements made...
PHOTOLJT: joyce and willo, earlier i asked for favorite jane memories...what do you two ladies have?
Willo: first thing that comes to mind is she had a really BIG boot that she threatened to kick my you know what is I didn't behave!!!
Joyce: The way she always greeted newcomers and talked to them when they came into the Alz chat. Her typos...her support when I had to place Mama...that was the most memorable
PHOTOLJT: she did have a way of making us tow the mark!
Willo: Jane was like a Mom to me, and got me throught some of the toughest times in my life...
Willo: this has brought back so many good memories...


These were emailed in..

From YIBBA1@aol.com

Thanks so much for sharing the snipits with me. I thought about Jane last week as my Mom finally ended her 10+ year battle with Alz. Alzjane was such a comfort to me back in those early years of disagnosis and I probably would not have made it had it not been for the chat group and her in particular. She will always hold a special place in my heart as will all of you. Take care.

Yvonne (Yibba1)


From Lucinda89@aol.com

Linda, thank you so much for sending this. I had a dinner I was already committed for and couldn't get away in time...but Jane was on my mind all day Valentine's Day. I'll never forget her and her horns or you with your 99 bottles of beer on the wall helping me keep my sanity at a time when it was just me and Mama battling AD and all the heartaches and problems. It was Jane who told me what to do when Mama threw her pills across the room when she needed them most. I would never have thought of crushing them and putting them in pudding...but it worked! Thanks for continuing to do all the great work. I've just started helping with an AD group at church called "The Gathering Place" for early stage AD. I haven't been with it long, just a couple of weeks, but think I've found good place to help.

Love you,

Cindy


From CKnox0911@aol.com

Thanks so much for sharing. As I read them I have tears in my eyes and tingling skin.

Jane was a truly wonderful person and continues to be missed. At times like this I wish I could be like (I Dream of) Jeannie and blink my eyes so she could come back, even if only for just a bit. One more chat, one more hug, just one more....

She touched my heart immensly.

Hugs,
Cindy


From JRNYWMN@aol.com

Thanks, Linda-- almost feel like I was there. :( You take care. Ann


From DOMS98@aol.com

Oh, how I wish I could have been there with y'all. I know I've dropped off the face of the earth as far as the AzD chats, Ribbon and everthing else is concerned. In fact you probably don't even remember me anymore. I was there when y'all were designing the The Ribbon website and then trying to get the chat opened up. I remember the Grand Openings that weren't always so grand! <g> I was the dodo who could never get the website or chat room site to open up on my computer. ;-) You were always having to send me pointers and help. I had wanted to help man the new chat room for some of the time periods. Unfortunately my parents (who both had AzD) were really kicking up then and my young children were demanding any free time I had left over.

My memories of Jane and the chats are wonderful....lots of happy fun times! The 99 bottles of beer on the wall song was always fun. Which one of you started singing that? Lots of joking and fun but The #1 Rule: Whenever anyone new came in the room with a problem we were to STRAIGHTEN UP and fly right and give them all our attention and help. :-)

Jane would always pop up with an IM each day asking me "How are you doing?" It amazed me at first that she would even think of IMing me....some newbie she didn't know too well. But she was always there....ready to listen, sympathize, advise. I will never forget the last time I spoke with her in IMs. It was late at night Christmas Eve or New Year's Eve, I don't remember which, (Christmas I'm thinking) but she wasn't feeling well. She said she felt really bad and she was sorry but she just had no zip. I told her she needed to tell someone, call her doctor, go to the ER ....SOMETHING! But with her tired "voice" she said, "No, It's Christmas Eve (New Year's Eve) I don't want to bother any one." :-/ She had her heart attack right after that. I heard within the next few days that she had ended up in the hospital. So terrible. So sad. How we all hoped she pull through!!!!

Her death was a devastating blow to everyone who knew her, but it was heartening to see how everyone pulled together to support each other afterwards. She would have been proud!

Dotti


From Granjury@aol.com

Linda...wow do I remember Jane. I was one of those newbee's that you referred to. But Jane on line for me had all the answers. Not always what I wanted to hear.

How much she is missed, one of a kind lady.

Will miss the chat on Friday...In between homes right now, so no computer at home. My best to all, hugs Judy


You never know when just a kind word, a bit of helpful advice, a nudge in the right direction will help someone tremendously. You can make a mark in someone's life by sharing with others who are in your shoes. Come join in the support, laughter, and friendship!

They are held Monday thru Friday evenings. 6-8 PST, 7-9 MST, 8-10 CST, 9-11 EST.

Everyone is welcomed!

The Gathering Place - Online Alzheimer's Caregiver Support - TheRibbon.com
www.theribbon.com/gatherplace


When is it "time" responses

From DTyler916@aol.com

Posey makes an alarm pad that can be placed on the bed under the matress pad. If a person gets up the alarm goes off. This would sure be better than sleeping in the armchair. I saw one yesterday in a Home Medical Equipment retailer. It was the wheelchair version and the cost was something like $197. Hope that may help you.

David
DTyler916@aol.com


From proudmom3@yahoo.com

What a difficult question you have posed, but one many of us have had to face - When do you stop treating the symptoms?

In my family, we have divided the different aspects of my mother's care with my sister making financial decisions, bill paying etc. and I am the medical decision maker. All 3 sisters discuss things and we usually come to some pretty good decisions.

While we don't care for our mother at home, the same issue has come up. Early on we decided that the main concern should be for quality of life. It seems to me that when you see a loved one, you can tell if they can enjoy life around them or are they merely existing with their infirmities. We decided to make the decision before we were in a critical state of having to make a life decision. It was my opinion that Mom was truly not enjoying life anymore. Our own love and care selfishly guided us toward prolonging her life, but the pragmatic part said that life for our mother had no real quality to it. As a result, I talked to her doctor about discontinuing any medications to treat her medical conditions. Interestingly, he was willing to discontinue some, but not others early on and we were all ok with that. When she fell again and was seen in the Emergency room, it became obvious that a nursing home would be an appropriate setting for her because she was up at night, was unsafe (falling) and needed more skilled care.

Having already made some decisions about her treatment was so great because we were faced with this upon admission: how aggressively did we want our mother to be treated? We already knew the answer - minimally.The nursing home had explained different levels of care and were very understanding. I live in peace knowing that she will be given the opportunity to die when her body is no longer functioning without a lot of drugs and intervention. Is it hard? Yes. Is it the best for her? Yes.

The hardest question we had to answer was - are we making this decision for her or us?

Several years ago I wrote a letter to you about celebrating holidays with loved ones and begged the question - are we doing this for our loved one or for us? I noted that the celebrations seemed confusing to my mother and that they didn't enhance the quality of her life. We included her for us - for the way we were used to celebrating. End of life decisions are much the same. Ask yourself the hard questions: if Mom were deciding this for another loved one in the situation, would she want the person to live like that? Is part of you reluctant to let go? Are you afraid of what others might say if you decide not to treat the illnesses? Have you gotten so used to the way things are that you don't want to change things? Do you have any quality in your life or is your major job caregiving? Is this fair to you or her? Is this the point in your life and your mother's to look in a different direction?

I applaud your decision to think about the future and make decisions now so that it will be easier when the time comes. You will be able to think more clearly and assess the situation less emotionally and more reasonably.

God bless all of us who are faced with these questions.

Sincerely,
Jean


From Barnie Miller@aol.com

I am the caregiver for my wife who has Alzheimer's. She would lay awake all through the night and of course I lost sleep also. And..she fell several times.

Now, I give her 6 Mgs of Melatonin (Time Release) pills and 10 Mgs of Ambien (anti-depressant) and she sleeps all night.

We have a TV in our bedroom and I set it on 'mute' and let it on all night. I think the soft light helps also.
The two times she fell the room was in total darkness.

At least you might try this to see if it helps.


From thornygates@hotmail.com

I knew when I read The Ribbon this morning, that I couldn't refrain from responding to the hard question and most difficult decision that you are facing. My being feels for the pain and struggle this brings you. When do you know that the time has come to no longer seek 'emergency' treatment for your loved one? It is this question that I struggled with off and on for two years. The last year it was not only a constant pondering on my mind, but the hospital staff asked with every emergency room visit and every critical care unit stay " what about a DNR order?" My loved one always said if there is a chance of some quality of life I want to be resuscitated. I didn't feel I was getting the medical information needed to make a flat statement of do not resuscitate. There are too many variables it seems. Doctors hesitate to saying anything suggesting there is no chance of improvement let alone that things will only get worse. It is rightfully our decision to make. However, I found this hesitation of the medical personnel on a clear prognosis, brought frustration in trying to answer this question and anger at myself for thinking about it. The guilt I felt was overwhelming. I am glad that you have support in your brother and are able to attempt to deal with this together. It's strange that it creates such a burden when we know for years that we will lose our loved one. We know that at some point we will have to say enough is enough, let them have dignity and peace. Caregivers know, but we keep it in the back of our minds until forced by circumstances to confront it. There was much denial on my part. I often didn't see what was clearly in front of my face. Even with you and others from The Gathering Place telling to be ready or asking if I was ready. I honestly said no without even thinking. The time would come and the decision would be made. The most that we can do is be prepared not for when the time is, but for being able to recognize it when it comes. How can we do this? How can we answer, when do we know the time has come? The question really is what is quality of life for our loved one? It is an individual answer for each person. Perhaps by asking it this way, we can clear our mind and view it a bit more objectively. No you can't block emotions completely, but it helped me to focus on my loved one instead of me. Then I was able to ask questions like; what does my loved one feel is important? What makes life have meaning for my loved one? What brings them enjoyment, contentment? I had to keep asking these questions as the answers changed as my loved one's illness progressed. The things that held meaning for them became simpler things. A touch, a flower, a hug. Time spend just being together. To get these answers I had to try and see with their eyes and mind. When lucid moments were few, it seemed life became more frightful. Watching, I found my answer because my loved one gave it to me. Not in words, but in trying to take to many meds perhaps? But still I was unsure until they started to eat less or not wanting to eat at all. That was saying I'm tired please let me go now. My loved one showed me and helped me to come to an understanding of the question, what is quality of life for this loved one now. I couldn't have told you then what I was doing or thinking. Only now, over a year since their passing can I finally let go of some of the guilt, the should of, would of, could of. Now, I can see a little better. I know it doesn't make it any easier to actually have to make that decision. Hopefully in sharing I have been able to express that you will know when, only, when the time is right. Please know I hold you close in my soul with grateful thanks to you Jamie, for being willing to ask the tough question and allowing me to share, for it has helped me.

Take care of yourself,

teen


From LauraW64@aol.com

This is in regards to your question about when is it time to say "enough" and let nature take it's course. My Dad had dementia for the last 12 years of his life. He had declined for the last 2 years or so, but during his last 6 months, we children could tell that the end was near. He stopped wanting to eat, and small physical problems escalated into bigger ones. When nutrition and weight loss became a real problem, we thought about a feeding tube but we all felt in our hearts that Dad would not want his life to be prolonged the way it was then. What a hard choice that was! It was totally against our "anything for life" instinct, but we all had enough experience with Dad with his full mind and without it to know that his mind and body were in cahoots and were opting to leave. So, once the doctor made the determination that he was dying, we called Hospice and they cared for us, as well as caring for our dying Dad. He died peacefully and painlessly, we hope, on June 20.

In my experience, you can pretty much sense when enough is enough. It was tough to broach the subject amongst ourselves, but not too tough. I think we 4 children all felt the same thing - that in Dad's mental state, he would only want pain relief, not a cure from a grave disease. Sure, I think my sibs and I all still feel a fleeting bit of uncertainty and/or guilt about allowing Dad to give up. It was hard to see. But it would have been more difficult for Dad and for us to see him go through chemo, or dialysis, or surgery in order to prolong his already lost life. Yes, it was tough but I think we would have done the same thing again if we had to, and thankfully we don't.

I hope this helps some people cope with their own family's end of life issues. I really recommend the wonderful people at Hospice - they are there as much for the family as they are for the loved one and treat all equally with respect and love.

Take care, Jamie and best of luck at this difficult time...

Laura Walker


From jleehawaii@aol.com

Jamie I feel bad and hurt for you and your family. My family was there last year with our Mom. All six of us children decided against any tubes or unnatural methods to keep Mom in her suffering. Soon God intervened and took her home. We are all very happy with our decision and feel she is in such a better place. Aloha Jeanne (Hawaii)


Again we thank you for all your support. This is YOUR newsletter and you have proved that point in this issue. We haven't had this much response in a long time. We LOVE it!
Until next time...

Hugs and Peace,
Jamie and Karen

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