Passage Into Paradise - A Caregiver's Journey
Author: Karen LargentPublished on: May 1, 2000
Welcome. For the next few months, I will be featuring articles by Dorothy Womack, a woman I have never met except via e-mail. She was referred to me by Gail Mitchell and I thank Gail for the priveledge to meet Dorothy and share her work and experiences with you.
Dorothy cared for her mother until her passing, her mother was a victim of Alzheimer's. Dorothy cared for her in her home. This in itself is a sacrifice of love, self, home and personal life. She did this for love and with a deep faith.
Dorothy has put her experiences as her mother's caregiver into on online book to share with all.
Over the next few weeks and months I will present her work to you in a special series of articles. I believe her work is important to share with all who care for a loved one with Alzheimer's Disease.
The following is the beginning of a journey, it is not for the faint of heart and may be disturbing to some. Please read and feel free to comment. This article covers Dorothy's experiences during 1991, 1992 and 1993. Her Mom lived with her for 14 years total, the last 4 was when she was totally bedfast and was her sole caregiver 24/7 (her husband worked 3 jobs to pay the bills).....Most of the book about her is contained in the years 1992 through 1996, when she died - However,she did start some excerpts before coming home to stay with her full-time on January 1, 1992
Please be sure to return in the next weeks and months to read the rest of this moving account of a caregiver.
by Dorothy Womack
Welcome to PASSAGE INTO PARADISE -----
I finally decided to put it my book about my own mother’s experience with Alzheimers up on the Web for anyone who needs help. It is a very graphic, detailed story – not for the fainthearted. This is a book for those who are keeping their loved ones at home until the end comes. Although there are gruesome realities, there are also amazing spiritual, supernatural experiences, both for my mother and myself. My mother saw Heaven on at least 4 occasions and came back to tell me about it. I saw my mother after she died, for a brief 3 seconds. In my original book, I set apart the Spirit of God’s direct comments to me from my own – However, the conversion has rendered much of the wording the same. So you will have to go by instinct in sorting out what came from my thoughts and what came to me directly from the Spirit of God. I believe He speaks to all who will listen – We just need an open heart and mind….
Here then, is my own mother’s struggle and my story of 14 years with her, the last 4 years with her entirely bedfast and dependent upon me as her caregiver, 24/7. I would not trade a minute of time that we spent together!!
PASSAGE INTO PARADISE
This book is dedicated to my mother, Vivian H. Hanby …..
Whose courage in the face of certain death gave me the courage to face an uncertain life……
PSALMS 90:10
The days of our years are threescore and ten (70), or even if
By reason of strength, fourscore (80) years –
Yet is their pride (in additional years) only LABOR
And SORROW; for it is soon gone, and WE FLY AWAY…
INTRODUCTION
This is the true story of my own mother’s long journey to death’s door (Heaven’s Gateway) and subsequently, my own arduous journey back to the living. It has taken more than two years after her death for me to openly share our experiences, but I do so in order to honor her memory.
I believe very deeply in God, in Jesus Christ, and in the Holy spirit. I also believe God speaks to each of us through His Holy spirit – and sometimes, we can actually write down what He has to say! For this reason, His Words will be italicized throughout the book, to separate them from my own thoughts and experiences. I totally believe and have firsthand experiences (as my own mother did) with the supernatural element by way of dreams, visions and visitations.
To the Reader: I am sure you will find yourself somewhere amid the pages of this book. You will find information that will amuse, sadden, enlighten, comfort, confuse, and even awe you. Some will be shocked by the intensity of my feelings and thoughts. Others will find solace in knowing that you are not alone, nor are you crazy – you are reacting very normally, given your extremely stressful situation! I also feel that someone (who is now living in the midst of the same hell I witnessed and endured) will find this book to represent a roadmap of sorts: a way to get through the day-to-day horrors; to learn about our purpose on earth; to realize that despite the pain, the guilt, the inevitable loss – that your life will continue on, with the promise of a brighter future…
Some will view with skepticism – But all will view with interest. Remember: No matter what happens TO you, AROUND you or even IN you – All is not lost! HOPE remains – LOVE remains – GOD remains…
October 7, 1991
We have been watching after Mom for almost 8 years now. She has been going downhill pretty much gradually, and once in awhile I look at her and wonder who she is. She looks so different from the mother I remember. I know her days are numbered, and I struggle often with my feelings about her passing. She is just like a 3 year old child now, does what we tell her to do and believes anything we say. My husband told Mom he was going to paint her room black, and she almost cried until he told her he was teasing. She takes everything so literally, but I guess it is because she is so totally dependent on us for assistance – bathing, cooking her meals, washing her hair, paying her bills, etc. I just pray she won’t have to suffer much in the process of her life ending…
December 30, 1991
We are managing about the same in our little part of the world. Mom doesn’t go out anymore, but entertains herself with television. We take care of her shopping, washing, cooking, etc. She seems to be pretty well adjusted to her limited lifestyle and doesn’t complain very often. She does have pretty good health, despite her limitations. My aunt just had heart surgery – I find it very interesting to note that she has spent most of her life having annual physicals, eating properly, exercising a lot, walking constantly – and yet she has more physical problems than what Mom does, when my mother did nothing to preserve her health, didn’t have physicals, didn’t exercise, no walking, no special diets. It seems to me that some of what we expend our time doing to prolong our lives is really nothing more than a waste of time and an illusion of sorts. Yes, we can do what is reasonable to stay healthy, but I don’t think we can totally escape the progression of time on our bodies. I am beginning to think that longevity of life has more to do with what you SOW than with what you EAT!!
February 4, 1992
We taught Mom how to microwave meals we make for her, when we are at work. We call every ½ hour to check on her, to make sure she is alright. Mom also has a small refrigerator, which we put her food into – She eats when she gets hungry. She keeps her breakfast and lunch portions there, along with fruit, juices, sugar free cookies and things she can much in-between meals. It gives her a feeling of control and choice. My husband and I both knew at an early age that we would care for our parents when they became old – We felt this was the will of God, and we knew when the time came we would be there for our parents. I also realized years ago that there was a lot of bitterness in me over areas in my childhood where I felt Mom should have protected me – but I have learned that a lot of things she never even knew about, so I was wrong to punish her and withhold myself from her for not helping me out. She too did what she could with what she knew, which sure wasn’t much at the time. But I had to learn to see her as a person with limits, and to forgive her where I felt she had failed me. When I was able to do that, our relationship changed for the better. I realized that she is not just my mother, but a person who needs my company, support and nurturance. There is a scripture which talks of God restoring the years that the locust has eaten – I think that applies here. God can restore all the years which appear to have been totally wasted between us, and give us a relationship that heals and restores us both. One day it will happen, I am sure of that. We both still work outside the home, Mom just oversees the dog and answers the phone. We just get by the best we can and stretch what we have. Wisdom is very important to me, because when it comes down to it, if you are wise with God’s wisdom, you can get through the hard times without them tearing you apart. And wisdom teaches you how to manage while others are losing everything. Wisdom endures – Money does not. So much for the sermon.
August 20, 1992
My husband has a new job – He goes in at 5AM, so he gets up around 3AM. Mom gets up with him so he can fix her breakfast and then she goes back to sleep until I get up at 7AM to do my chores before going to work. Mom goes along with this agreeably since she really doesn’t have much choice. She can sleep all day while we are at work, but we have to be in bed early if we are to keep up with everything. Each day I see more and more reversals. First it’s making her meals, like she did for me – then it’s bathing her – now it’s setting bedtimes, like she did when I was in grade school. Everything that goes around surely comes around, doesn’t it? Mom wears a catheter full-time now and we have to empty it out regularly. She also keeps having accidents on the sofa and floor, so we mop a lot too. She doesn’t get the signal that her bowels need to move until they are actually moving – of course, then it’s much too late! I am grateful that Mom is still here with us, despite the progressive problems. She has been a wonderful support to both of us through all our financial ordeal and hasn’t hesitated to help us out when necessary. I owe her a debt I will never be able to repay. It was a very rocky road for Mom and I when we moved back in together in 1983, but I wouldn’t change it now for anything. It was worth every bit of the struggle to have the relationship we have now!
October 14, 1992
Mom said she would rather just pool our resources and then spend whatever is necessary for her care, so now I pay all her bills and am her guardian. She said she doesn’t have anything she needs or wants and certainly wouldn’t get as much attention or care in a nursing facility or by herself.
December, 1992
Mom said she saw her grandparents, mother, sister, father, childhood best friend in a dream last night. They were all smiling and motioning for her to come across a stream.
January 10, 1993
I bought Mom some fleece lined robes to wear, since the blood thinner the doctor put her on makes her so cold – We keep her bundled up at all times. I had to resign my job, as Mom had a major stroke on January 4, 1993 which rendered her permanently bedfast, no control over bowels or bladder. She has to learn to walk again. I knew it was only a matter of time before it came to this, and so it has. This stroke affected Mom’s left side and she has a lot of pain in her left arm, cannot make a fist at all. She cries easily again, just like with the other strokes and is very afraid. She is also losing control of her bowels, just like her bladder which preceeded her by 2 years. We don’t know if the bowel thing is permanent or not, will just have to wait. If it is, then I have to learn how to diaper a 140 lb woman – I might as well do that too, since I bathe her already. I realize over and over just why I didn’t have children of my own – With my mental stamina being what it is, I just could not have coped with being "sandwiched" in between a child and my mother. I would have lost my mind. My mother is my child now, and it is eerie in some ways, but natural in others. I guess the bonds just change in order somehow. At least I don’t have to fight her to get her to do what I say, like I did before.
Mom told me I was the last person she’d thought would ever help her in her old age – Gee, thanks! However, when I stood up to a visiting relative who was pushing Mom to "snap out of it", I blew up and sent her packing. I told her she had raised her kids, and it was my time to take care of my mother MY way!! Mom heard this, and suddenly, our relationship changed forever. God gave me unconditional love for my own mother, and she felt this in me. In return, she was very docile and grateful throughout her remaining years. Mom still has some slurring of her speech, but is leaving now. She worries about her left side and loss of control of her bodily functions – but I keep telling her that with each stroke, something will usually go awry with her body, most of the time with permanent effects. She is fortunate in that it has not left her permanent disabled, but the fear is a big problem for us to deal with. She knows the medicine won’t keep her from having the strokes anymore, and she is terrified.
We bought baby monitors to keep beside her at all times – one for her, one for me – also a coach whistle to wear around her neck so she can "summon" me. In the early morning, I hear Mom over the monitor singing hymns she learned as a child. It is very touching to listen to! I hate the hysteria that comes with Mom’s strokes, but try to calm her down and tell her of others who have had many more strokes than she and are still living. The bad part about all this is that I seem to be bonded to her like a mother is to a sick child. Her pain becomes mine, her fear mine, etc. It is hard to shake off and be a separate person from her. I don’t know if this is normal or not, but suspect it probably is when you are an only child and the mother is up in years and lives with you. I hope that she lives long enough to see her sisters once more, but cannot guarantee anything.
Mom has to take more medicine since this last stroke, which she absolutely hates, but has no choice. The medical profession is limited in just how much it can do to prolong life. Rationally, I understand that, but it is terribly hard to watch her struggle with her fears and lack of control. She cannot tolerate being helpless, which she isn’t yet, but she feels that she is. I do not want to live to be old, if this is what it will be like. I just do not see any good coming out of suffering, or prolonging agony and fear just to see another day dawn. That is just my own personal opinion, and I don’t expect others to accept it – but suffering myself, or watching others suffer, is something I just have no ability to tolerate. I did tell Mom that she would have to stop screaming whenever something minor happened, like making a mistake in "toilet training". I told her I am not too young to have a heart attack myself and if she gives her caretaker a nervous breakdown, then who will be around to take care of her? I have set down rules for when she can be hysterical – life threatening events, falling, strangers in the house, etc. But not because she missed the toilet or couldn’t get the door open fast enough. Every time she screams, I think she has fallen or something terrible has occurred and my blood pressure shoots straight through the roof!
I know when all of this is over, I will resume my own life again. Yet I must admit, it is hard for me to imagine going on without her – I feel guilty that she will leave and I will stay behind. My husband says this is normal, as he felt the same way when his father died. I am grateful to have his advice – as he has already been down this primrose path and I wasn’t nearly as understanding and kind to him in it as he is to me! But even though this is hard on all of us, I know without any doubt in my heart that I am doing the right thing. My purpose hasn’t been to PRODUCE life, but perhaps to PROLONG it for the one who gave me my own life. That makes sense to me.
January 12, 1993
Your mother’s body is simply worn out and cannot function adequately any longer. I will indeed honor BOTH your requests for her spirit to be set free and come home to rest with Me. She will not linger, nor suffer AGONY. You are not being punished, but merely strengthened for what lies ahead. You have let go, indeed, and I will now move in and overshadow her passage into new life with Me. I will uphold you with the right hand of My righteousness and the crushing of your spirit will stop. And peace, MY PEACE, will enter in thereupon and reside there forever. Do not fret or fear – Just rest in Me. Rest your body and mind. Let your spirit quicken the truth of My words to you. The crying is now over. Weeping endures but for a night – Joy comes in the morning with Me!!
January 14, 1993
All things work together for good to them that love the lord. ALL THINGS! This trial by fire is almost over and her passing will indeed be peaceful! I promise you this! You need not fear, for I know that you cannot stand suffering of any kind, especially in those whom you love. It is for this reason that not only will I spare your MOTHER untold suffering, but YOU as well!! In this way will you learn once again how great and how deep My Love is for you!!
January 28, 1993
Well things are progressing – I can diaper and clean Mom up in less than 10 minutes now. She has done well this past week, and they are going to start physical therapy on her so that she can walk a little bit again. The nurses have been surprised that she has made such a good recovery, as most they see in Mom’s shape usually don’t survive the first three weeks. She has lost a lot of her memories, but there is no set pattern to it at all. She sometimes doesn’t know who painted all the pictures in her room – but at least, we’ve got the coughing and fever under control. She still has transischemic attacks at night, usually right after the sun sets, but she doesn’t lose consciousness. She gets dizzy and queasy, but it passes in a few minutes. This last stroke took away her bowel control – She doesn’t know when she needs to go. She tires very easily – We get her up in her mother’s rocking chair at lunchtime for 20 minutes and let her walk the length of the room (about 50 feet, round trip). She usually is exhausted after that.
The baby food idea spawned a new way to nourish Mom. She eats food when we puree it in the blender and is getting a lot more nourishment now. She got feeling back in her legs about four days ago, so we don’t have to drag her up in the hospital bed anymore. Mom seems content knowing that I am nearby, and my blood pressure and heart rate have now returned to normal. She doesn’t know when she has the strokes, and I am told she won’t remember seizures or convulsions if she lives long enough to have them. That gives me comfort, knowing that she won’t be consciously suffering or remember what happens.
As for me, when Mom first fell victim to this last stroke, so much happened so fast that I felt as if we were both caught up in a landslide and were spiraling downward into a bottomless pit. It was the most horrific experience I have ever had. I truly hope I fare better the next time, and that I am detached enough from her to let her go Home without following with her! I cannot tell you how disappointed I was with myself when all of this occurred – I thought I was prepared and also strong! I found out exactly how weak I am! I didn’t know anything could hurt me this deeply, and it is very unnerving.
I do not want my mother to suffer, as I believe very deeply in Heaven and life after death. However, I do have a great problem in handling the interim period, where the struggle takes place. I will miss her deeply – However, every day there is a little less of her personality residing here with me – so it is truly a "catch 22". Each stroke and transischemic attack takes more of her brain cells away permanently – and I find myself becoming her memory more and more. I never wanted to be a nurse, although somehow I have always known this time would come. People say I am doing a good job with my mother, but their praise means very little to me. Every day I have to face the fact that I cannot rescue her. I can only seek to keep her comfortable, warm, dry and fed. God has to do everything else. This has really made me face my human limitations. We come into this world alone, and we go out of it the same way, even if we have a roomful of loved ones surrounding us!
The thought has crossed my mind how mothers take care of their children until they grow strong enough to go out on their own into a world where their parents cannot follow. In that way, my mother has become as helpless as a little child, and maybe I am caring for her just until she grows strong enough to enter the world God has prepared for us – A place where I cannot go for perhaps decades yet. I understand why the Scripture says you must enter the Kingdom of God as a little child, because that is what Mom is now!
Mom asked me one night if I wanted to see her when she "flew away". I read the Bible that night which said, "the horrors of death overwhelm me – oh that I could fly away and be at rest with the Lord and at peace in His Heaven". I also found an old autograph book that Mom had when she was 13 years old, where her now deceased younger sister had penned "When the golden sun is setting and your mind, from cares, is free – And of others, you are thinking – Will you remember me?". It really touched me, because Mom has been seeing this sister in spirit several times recently. Apparently, her sister’s passing affected Mom more deeply than she ever expressed. That note was penned more than 60 years ago! Symbolically, that note brought peace to me, because I realized that my mother has lived a very long, good life, with more healthy days than not – and she has an entire lifetime of friends and family on the other side just waiting to see her again. Here, she has only me. I guess it’s time for her to "fly away" and for me to let her go. I have realized my limitations and also faced the inevitable. I pray for God’s will to be done – This is all any of us can do – I guess it must have taken all of this for me to finally realize that truth!
January 31, 1993
When your mother leaves this life, you will not grieve or mourn in the depth that you now fear – For that has already occurred and you are walking in My strength and power now. She has prepared her heart where I am concerned, as well as you. She will suffer no longer – I promise you this. She has loved ones who are anxiously anticipating her arrival, where there is no night. She will be enshrouded in peace and surrounded with great joy. You are not losing your mother in any real sense, for she will continue to live on within your heart all the days of your life upon earth. And there will, yes indeed, come a day when you will see her again – though long time passes according to your timetable. And you will rejoice that her face radiates with health, peace and joy. Therefore, remember your mother for all the years of good which occurred – Remember her talents and accomplishments in this life. Remember her SMILE – Remember her LAUGHTER. For truly, I will erase the pain in your heart and torment in your mind concerning her – and you will remember more and more of the good she brought into your life, and less and less of what you saw her endure in her last days. The peace which you prayed and interceded for, she now has. Remember: SHE IS WITH ME – NEVER DOUBT THIS! Without you, her last days would have been a hell too hard to endure. YOUR presence made it BEARABLE – But MY Presence will make it REDEEMABLE. Prepare your heart and mind now – for the time is now upon you.
February 5, 1993
Mom was in a beautiful park which was brilliantly lit, but without the sun. She was walking, then leaping, running, dancing. She looked down and saw she had no catheter, cane or walker. She felt young again and was filled with joy and happiness. She was free of ALL physical limitations! She asked me how did this happen? I told her while she was in a coma, she left her body and went to visit Heaven! She was comforted greatly by this.
May 3, 1993
You must go on with your OWN life – This is what your mother did! There is no virtue in ceasing to live while there is still much life left IN you and TO you–YOU MUST GO ON
May 20. 1993
I dreamed that my husband’s mother told me she would personally help Mom with the transistion in the new world. She knew the landscape and would take MY MOTHER under HER wing, even as I had taken HER daughter under MINE! That Mom’s time was nearing and I shouldn’t be disheartened – that there were people who would be looking out for her on the other side. That I had made her son a good wife and we had achieved more in our lives than she could have ever thought possible.
June 12, 1993
Mom dreamed she was riding on a streetcar. She could walk fine, without a cane. Door opened and driver told her to get off, that this was her stop. She refused, said she wasn’t going to get off until he took her directly to town, her final destination. She was confused because she didn’t recognize anyone, although the streetcar was full and so was the place where it stopped. I told Mom that if this occurred again, to look for my husband’s mother or her own mother – then she could feel safe to get off. She said she’d never heard of going to Heaven in a streetcar – I reminded her that Biblical people went to Heaven in wheels within wheels, in chariots of fire, flew there with wings of their own – So anything is possible. At least I know that when her time comes to leave this life, she will not get off the streetcar unless someone else is there to hold her hand. It makes it easier for me to handle, knowing that she won’t be alone in transistion, from this life into the next.
July 19, 1993
Everytime my mother puts her hand on my face, it feels like she is touching my heart. There are times, as I watch my mother asleep in her bed, that I long to curl up beside her, hold her tight and put both her hands in mine – attempting to offer both of us some semblance of safety and security. But I realize that were I to fall asleep and then awaken, I would still be here upon this earth – while my mother would awaken in Heaven. I would know that I could not hold her here, nor could she take me there. Our bodies would be touching, but our spirits would be separated by death. Perhaps this is what is meant by "One will be taken – the other left". For the one who is taken actually takes their essence with them – and the one who is left behind wonders how and when they will ever see that loved one again. For although separated by death, we are united in Love – and throughout it all, the love remains. The questions are never erased, but then neither are the memories. Such is the cycle of life…
August 10, 1993
Mom asked me to send her sisters some jewelry she had, because she had nothing else of value to offer them. She sent her love, although she no longer can write – I am the mediator. The doctor says Mom is in the "terminally ill last phase" – Mom is now permanently bedfast, as another stroke finally took her down. She has 1-2 good days a week, 3 really bad days, and 2 so-so days. And you never know which day you’ll get until after you get up and check on her. Some days I would just like to go back to bed until the day is over, and start with the next day. It’s like a cross between Halloween and Groundhog Day (the movie) – Every day is the same, except with horror thrown in here and there! Mom is not suffering, although every stroke weakens her more and more. She had two smaller strokes this week, on top of the major one last week – so she doesn’t get much time off between them. She does get sick now when the strokes hit. But she’s fine once the stroke subsides. They said her final stage will probably be to enter into a coma and then leave us for good.
October 22, 1993
When the life of the spirit leaves the body, it then becomes an empty shell. Even so, when the body can no longer sustain the spirit of a man, God calls it back unto Himself. Remember, what you view is merely a shell, nothing more. It is a reflection of where the spirit once lived. But in Christ, we truly live, and move, and have our very being! The spirit of your mother is at rest with the God who created it, and life is within her always! Her body has served its purpose, but life is no longer in that body – but in another form with Me. The body has limitations – the spirit has none. The body dies, but the spirit lives on forever! And so, does the God who also lives forever call forth His Bride in Christ, to their final resting place with Him – Where God will wipe away all tears from their eyes and sorrow will be no more!
Therefore, grieve not so utterly and exhaust your very being – For she has not died, nor left you in any real sense. She has merely been transformed and stands, WHOLE and STRONG, in MY Presence, rather than WEAK and TREMBLING, in YOURS! Remember also that I love you always and do not add grief upon grief. You have borne up well and I have noted all of your comings and goings. Your reward will not disappear, nor your sacrifices be dismissed.
I have plans for you, IN THIS LIFE! For you see, this was never YOUR trial, but HERS – You merely served as a servant of grace to keep the burden from becoming too heavy for her to bear! And in that you actually became sustaining grace to your own mother in her last days, so also shall you now walk in that grace all the days of your natural life! And PEACE shall be an outflow of that grace – Be patient, you shall indeed see this come to pass before your very eyes! And this peace, which passes ALL understanding, shall indeed cause you to UNDERSTAND all that has happened over these last days and turn it to your good. For God is not mocked – Whatsoever a man sows, that shall he also reap. And you are indeed to reap a bountiful harvest – Even now, you are already in the midst of it.
But you will never forget what you learned through this particular time in your life. Your mother has been transformed in spirit, having left her body behind – While you have also been transformed in spirit, leaving the old way of thinking behind as well – For if any man be in Christ, he is a NEW CREATION. Old things pass away – All things become new! This is your heritage, My child, carry it well throughout the remainder of your life upon earth. For those who went before you, and those who will come after you, will learn much of Me from what you share with them of a spiritual nature. There is power in your words and strength in your physical members – Remember! Remember! Remember! And LIVE!!
Your life is to be full and rewarding, beyond your fondest dreams and desires. Life, as you have known it, seems to have been only one long series of trials to endure – Each being worse than the one before it. You have spent much of your life in a state of mere EXISTENCE – on the sidelines of what life truly has to offer. It is MY intention that you experience the joys of being alive, the purpose of life itself, to grow, ripen and mature, with peace and prosperity at your side. You have walked on the dark side of life for the first portion of your time upon this earth – even so, shall it now be that you will truly walk in the LIGHT of LOVE itself: Peace, beauty, joy, prosperity of spirit, soul and body. This is My compensation, even My recompence to you for your sacrifices – For he who shall save his life shall lose it, but he who lays down his life willingly, for My sake and in the behalf of another, shall find it again, in abundant measure.
The years of silence, sorrow and suffering are behind you now. You are entering into promise, peace and prosperity. The lessons have indeed been hard – but without them you would not be the person I meant you to be, nor would you possess the wisdom and experience to hold out hope to those who follow after. I will heal your heart and you shall not suffer loss. I have healed before when you thought it was impossible. I have created life from the ashes of your dreams and granted you the desires of your heart. They are already in your midst – You need only to reach out and appropriate them! All that is MINE is YOURS –Remember! For he who goes forth weeping, bearing precious seed shall DOUBTLESS come again, with REJOICING, bringing his sheaves with him!
November 10, 1993
We have invented head, eye and hand signals, should she forget how to speak, which is a real possibility now. This way we can continue to communicate. When the bather washes her hair, I lay her down on me to dry her hair and we look like a human centipede – two sets of arms, two sets of legs. So we still have some humor in our lives. The bathers come daily and the nurse comes 2-3 times a week. They tell Mom how lucky she is to have me caring for her. But I feel that I am the lucky one, because I have learned very important lessons – especially that all we leave this life with is the character we have developed inside – not all our achievements or possessions. All we leave behind is our influence in the hearts of others. It all comes down to LOVE – This is all that we can take with us, while at the same time, leave it behind.
I know I have done the RIGHT thing where Mom is concerned, perhaps often in the WRONG way – but we have survived and grown in spirit, although her body fails day by day. I waited my whole lifetime to gain my mother’s trust and affection, and now I have it. I also know that I am loved, wanted and needed – something I didn’t know 6 months ago. I hope to carry this into my own future as a better, more secure person – one less bent on self-destruction and less concerned with ambitious pursuits. For the end remains the same for us all, each in our own way, instead of focusing on making the most MONEY in LIFE, I intend to make the most OUT of LIVING itself! Stop and smell the roses, so to speak. My mother has taught me more by example in the last 6 months than in the 40 years prior to this! It has been hard, no doubt, to watch her fade away before my eyes – Yet it has also changed me for the better. It seems that for every day her BODY FADES, her SPIRIT GROWS just a little bit brighter!
Another interesting detail: One day, I felt as though Mom and I were on a landslide going down a steep cliff to our demise. But somehow, after we became airborne, instead of FALLING, we began to FLY! I found that now my FEAR OF DEATH has been transformed into FREEDOM FROM IT. We can fly now, and we are free!!
Summary of 1993
For a long time I felt that writing down what happens would be more destructive to me than good – but I have since re-evaluated that stance and realized that this is a very good way for me to retain memory of Mom’s last days, as well as offer me a way to "vent" my fears and feelings, enabling me to keep sane in the very midst of utter insanity.
The most recent event left me shaken to the core of my being. It took me days to regain my concentration and composure. Last week, Mom went into Cheyne-Stokes death rattling. She woke us up at 11:30 PM, with a sound coming over the monitor that made my blood run cold. I had heard that same sound 5 years ago when my husband’s uncle was dying. I didn’t love that man, yet it took 2 years before the nightmares of that event faded! If I had but known that what I was witnessing then was a foretaste of what awaited my own mother! We ran to Mom’s side and tried to wake her up – talking, shining a light in her eyes (with no response other than a fixed stare), moving her about the bed. We sat her up more and she began to throw up, not opening her eyes nor her mouth. It just came out the sides, with still no consciousness. We noticed her body jerking and knew her brain was seizing. Then she began to breathe normally. I had checked her pulse which was 50. In 10 minutes, it was up to 105 BPM!! I stayed up with her all night. At first, she would look at us like she didn’t recognize us – she didn’t understand English – Her lips would move, but her mouth didn’t open. After two hours, she nodded twice to my questions.
Her body temperature dropped to 94 degrees and stayed there for 4 hours. When she went more into a coma state, she remembered things from that point on. I am totally convinced that those in a coma hear us and know we are there, but are totally unable to respond to us. While in seizures and Cheyne-Stokes, they are not aware of anything at all. God knows where their essence really is during those times!
During this incident, I felt as though the floor and ground had opened up and there was nothing but blackness under me and around me. Although my heart was beating triple fast, I felt like I was floating through a nightmare, like I was moving in slow motion, in limbo. It seemed as though Mom’s bed was floating above me, in the air, and I kept trying to reach her. It felt just like the re-enacted nightmares I have seen on TV – except I was WIDE AWAKE. I was so terrified that I couldn’t cry – All I could do was shake. My legs felt like jelly and I felt faint and really sick.
I was disillusioned because I know intellectually that the time is here – and yet I still react and go to pieces emotionally. It is very disheartening to know that I will never be ready when the time actually comes. We are connected, my mother and I, and until the silver cord is broken, it shall remain that way. I have stopped asking God to take Mom Home, because I no longer feel He, nor anyone else, really cares. I begged God for so many, many months and things only worsened. I have begun to think that the trial is not Mom’s, but MINE. She has no memory of these events – Grace is operative. But I have torment heaped upon torment, adding to a lifetime of memories which I can never erase.
Her sound was that of a snoring, ferocious bear – getting louder and louder, going through me, deeper and deeper. It is a sound I will never, ever forget – nor will I ever understand…
I did talk with a trusted medical friend, who said he was amazed that Mom had survived 3 months, much less 14 months – But that his grandmother went through the same experience and it took 6-8 weeks for her to die from the initial onset of Cheyne-Stokes. It is not the PASSING that disturbs me so, but the PROCESS of PASSING!! It is too horrible for words, something I wouldn’t wish on an enemy – So we move along and we wait – We eat, we sleep and we stay guarded, ready for the worst from SECOND to SECOND.
Mom has recovered somewhat from this incident as well – although she says less, looks tired and drained of energy, lacks concentration and her emotions are flat. She is sluggish in her speech and thought processes. She sometimes can’t tell time, doesn’t know what day it is, or if it is night or day – even though the drapes are open and the sun is shining. I have watched my mother disappear, day by day, virtually in front of me. She is dying physically, dropping 15 lbs. In a month or so – Emotionally and psychologically, she has lost most of her memories of the 90s, 80s, 70s, 60s, and most of the 50s. She can remember my birth vividly and her childhood too, along with her days with her own mother. She has forgotten most of her own life as well. We have long since given up all conversations of "remember when" – those memories belong only to me now. I have become not only my mother’s CAREGIVER, but her MEMORY as well.
Each day, I sit in this house, waiting for the bomb to blow, the shoe to drop, the sky to fall. I feel alienated from the world around me, isolated, no one knows we exist, nor do they care. Life goes on – We dwell in our own tailor-made coffin – Dead, yet alive. Purposeless, without hope or meaning. It seems sometimes like house arrest – punished without recourse, without explanation. For doing what I know in my heart and soul to be right, keeping Mom with me to protect her rights and allow her to have quality in her last days. Yet the persecution from people has been endless and the torment from spiritual realms relentless. I have had nurses tell me that Mom’s last days in a nursing home would have been spent tied in a wheelchair, then tied in a bed, then injected with morphine until she didn’t know she was still in this world. Mom’s comment to that option was that it would be the same as already being dead!
Mom has taught me more in the process of her dying than in all the years of her life with me. Mom never complains – She is remarkably resilient – She takes a licking and keeps on ticking. She enjoys the beauty of nature: sunshine, birds on the railing, kittens looking in the door, cloud formations. She doesn’t moan over what she has lost, but is grateful for what remains, no matter how little it is! She values life just as it is, and has no desire to leave it.
When she throws up so much that she screams out and turns ashen gray, she asks for food within a few hours and tries again. When she no longer could chew food, I learned to blend it into mush. This worked for about 9 months and then even that wouldn’t stay down. So we went to baby food and oatmeal. She eats probably one cup of food a day, but drinks a lot of water.
She survived our natural disaster when an ice storm hit – We were without electricity and heat for 60 hours – 36 hours we survived in a 30 degree house. Mom was underneath 4 blankets and 4 comforters, without lights or sounds the first day, yet she ate and never complained once. We got a battery powered radio and light for entertainment and then begged one of our friends for his kerosene heater the last 24 hours. It helped warm the house to 60 degrees, but left us all woozy from it. Mom survived ALL this, after having 6 full weeks prior to this with no incidents – No transischemic attacks, no screams, no seizures, no sickness – then 2 days later, boom! Strokes, seizures, coma, Cheyne-Stokes, everything you could put in a nightmare – just pour and stir!
I have this incredible sensation of detachment and alienation from all others. I called my aunt to tell her of recent events, and although she sympathized and even cried, it didn’t ease my pain. My husband helps me handle Mom during the bad spells, and even then I feel separated, alone, alienated from him. The aides wash Mom and talk about her condition – Yet my pain continues. I realize more and more that we only have the capacity to feel that which touches us DIRECTLY. Our flowery words have no effect to those who grieve. We cannot truly reach the inside of the mourner unless we have also literally walked in their shoes. It is true that we are born alone and we die alone, regardless of how many people remain at our bedside!
I look back now over 3 years’ time and see little signs of today. Mom came out of the bathroom, staggered around and began to mumble gibberish. It only lasted about 3 minutes. But it seemed like 3 days. Then she began to do other strange things – like sitting in a grocery buggy at the front of the store, waving at people – repeating herself, having trouble getting up and down, in and out. Her cane became her constant companion. As time progressed, Mom started losing control of her bowels – she would make messes without warning and then try to clean up the evidence, in order to hide it from us. We completely changed her living quarters into a nursing area and went about trying to establish what have become the routines of today. After a big fight with a relative, Mom became my child in the truest sense of the word. I claimed full responsibility for her welfare and this gave Mom the sense of security she needed to trust me inexplicably.
This past Spring was hard, because Mom’s moods were so erratic. She would have mild transischemic attacks, where her eyes would freeze for about 3 minutes. Sometimes she could relate that pictures on the wall were spinning, or that the bed was tilting and the entire room was moving. But after the T-I-A stopped, she seemed alright – except for that pervasive awareness that her mind was leaving her, little by little, as each T-I-A hit her. Usually 2 days would follow with lots of sleep, confusion and poor appetite. Then she would rebound for awhile.
We took her out on an excursion in the wheelchair on Memorial Day and she did quite well. She was responsive and friendly, and the wheelchair made it easy for us to get her in and out of the house and car. Earlier this winter, she had made so much recovery that she could walk using a walker. We would sit outside on the porch bench and watch traffic go by, while the sun shone on us. Mom developed a reaction to sunlight, so we put her thick glasses on that covered her eyes – These were the ones used when she had cataract surgery a few years ago. So as we sat outside in the sun, her with her robe, walker, and heavy dark glasses, I suggested we get a tin cup to place in her hand and then we could collect "alms" for cars passing by! We had fun that day – it was slow going, but so worthwhile. But by Spring, she could no longer use the walker to get around on her own power. She was having psychomotor seizures, spurts of adrenaline which gave her energy to raise her legs above her head and bounce on the bed. This frightened others, but it was harmless. Mom’s mind seemed to wander back to her childhood a lot, and she laughed often. How I miss that!
We even took her with us to the airport when our friend was leaving town. She seemed happy, although ditzy. I rode in the bed of the pickup and kept being clobbered by luggage and the wheelchair. My husband drove through the sprinkler system and got me wet – They all had a good laugh over that, especially Mom. She loved to get out of the house and go somewhere, even though it was an almost impossible task and wore her completely out. We had built a back porch the year before, so she could sit outside when it was pretty. Eventually, we noticed it was too hard for her to walk those few steps from the house to the chair outside, and she could no longer step down the deck stairs, but had to go down backwards sitting in the wheelchair. She had fell in the shower in early Spring and broken 3 ribs, even though an aide was there with her. We put up poles to help balance her movements, but she was only able to use them twice. She became too weak to walk the five steps from the wheelchair to the tub, so bed baths were ordered.
On July 4th, we took her out for the day. She seemed dazed and slept a lot, and after we returned she had no memory of even going! What was significant about that event was that upon returning home, she collapsed trying to climb the stairs and her face went ashen. We knew her days of traveling were soon to end. She was weakening too quickly. She was still eating blended food well until the Fall. Then in October, she started having T-I-As where she would shriek and then throw up uncontrollably for 10 minutes or more. She was sick at first every 14 days, then every 10 days, then every 7 days, every 3 days, and finally every other day. On my birthday, we took her out for the very last time. We spent the day out, and she had forgotten it all by morning.
By November, she asked not to be taken out of the hospital bed anymore. She couldn’t walk nor balance herself even to sit in a chair. Her T-I-As and times of confusion increased and she always looked hypnotized and threw up until it passed. After awhile, we adjusted to this too – We had no choice. Right around Thanksgiving, she went into her first coma. Her pulse dropped, her body temperature was 94 degrees and she was totally unresponsive to us. We would ask her questions without reply. She stayed in the coma for 8 hours.
When she came out of it, she remembered us talking to her and taking her blood pressure, but she was unable to respond. She couldn’t open her eyes or her mouth to communicate. She said she felt peaceful inside and wasn’t the least bit alarmed at her lack of movement. Once again, she rallied and with sleep and baby food, she came back to us – with more of her memory missing. She had played music for over 50 years – yet she could not recognize a tape played by her own hands, nor any of the songs on it. Sometimes she didn’t know who had painted all her oil paintings. From Thanksgiving until the end of December, she had T-I-As every other day, throwing up, shaking and shrieking. It was horrible – It made the first 6 months look easy by comparison! She ran fever every day and rarely laughed or talked.
I had over this year called for help 3-4 times to the nurses – Each time I was rudely treated and no one came, since Mom refused to be hospitalized. Finally, one of the nurses came out and told me flatly that Mom was in the "end stage" of her life, that she was terminal, beyond medical help or interest – That all I could do was keep her comfortable and toughen up – If I needed psychiatric care, she would recommend someone! Otherwise, care would consist only of baths and catheter changes. I was so devastated that I fell apart very badly. I cried uncontrollably for days – I didn’t eat, didn’t sleep – But I took care of Mom! During this period, I thought Mom wasn’t aware of anything, but I was wrong. One day, Mom touched my face and said "My poor little baby. Please stop crying, this is hurting me more". I felt just like she was touching my heart! She had lost so much and yet kept on going. I knew that day what I had doubted my entire life: that I was truly loved by my mother. She just had never been able to show it in words or actions. She often spoke of how grateful she was for my caregiving, but that is different than being loved. Now at last, I knew it deep within my soul. Something devastating had happened, and yet something transforming had also occurred simultaneously! I did mean something valuable to my own mother – I was not a mistake, a burden, or in the way. I was wanted – I was LOVED.
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