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.
In Passing: Those We Must Remember
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.
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.
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!
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...
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
this room lives a wonderful woman named Mary
Snippets from the Valentine's Day Chat
in Memory of Alzjane198
TheRibbon and The Gathering Place Friends:
These were emailed in..
From YIBBA1@aol.com (Yvonne)
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.
From Lucinda89@aol.com (Cindy)
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.
From CKnox0911@aol.com (Cindy)
so much for sharing. As I read them I have tears in my eyes and
From JRNYWMN@aol.com (Ann)
Thanks, Linda-- almost feel like I was there. :( You take care. Ann
From DOMS98@aol.com (Dotti)
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.
From Granjury@aol.com (Judy)
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
The Gathering Place - Online Alzheimer's Caregiver Support - TheRibbon.com(Link: http://www.theribbon.com/GatherPlace/ )
When is it "time" responses
From DTyler916@aol.com (David)
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.
From email@example.com (Jean)
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.
From Barnie Miller@aol.com (Barnie)
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.
From firstname.lastname@example.org (Teen)
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,
From LauraW64@aol.com (Laura)
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...
From email@example.com (Jeanne)
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!
Hugs and Peace,