Monday, February 11, 2013

A widow's fog

It has been almost a year since my husband, George passed away due to complications from Alzheimer's disease. His death seemed sudden to me, although he started to deteriorate a few months before his death. I was prepared for it but somehow it left me off balance., shocked. When one is a caregiver, all of one's focus is on the process of caring for your loved one. You are always in the moment, not looking forward or backward. He needs to be cleaned, bathed and changed. He needs his meds. He needs to eat. One's days are filled with doctor's appointments, transporting, filling the days with distractions, activities. It is your job, your current career, your life.

I did not cry at his death for several reasons. One, I was too tired, emotionally and physically. Two, I was relieved. Three, I was grateful that he was no longer confused, scared, bewildered at the world he had could no longer fully understand. And, I had already grieved while he was alive. I had lost him several years before. The man I loved was gone, he no longer existed in that frail body.

I have gone about this last year doing the last of my caregiving role. Settling his estate, his affairs, organizing and putting away his part of our life together. And little by little, beginning again. I am moving again. This time into a new life without him. This is my home now. The empty spaces are filled with my things. I have filled the void that he has left with myself. I miss him...the vital, exciting man that had a great sense of humor and big strong arms that hugged me and held me.

I remember when I retired from my job years ago, after a lifetime of working, I was excited about all the free time I would have to finally be able to do all the wonderful things I wanted to do. Then something happened. I felt adrift. I was no longer needed. I was no longer going to be able to make a contribution.
I no longer had a job, a purpose. It took awhile to make that transition but I did. Then true retirement set in.

I am in transition again. My job as a caregiver is over. While I am relieved, I have had that same feeling.
I have slowly come out of the "widow's fog" and am embracing my new life. I am changed. I am alone but not lonely. There are new challenges but the ones that present themselves are not as daunting as the old ones.

I am forced, perhaps for the first time in my adult life, to focus on me. I have been reintroduced to this woman, who has been a mystery until now. And as I get to know her.....I kind of like her.

Friday, February 3, 2012

I am losing him.

Yesterday, my husband was admitted to the hospital with pneumonia, a urinary tract infection, failing kidneys, and several large pressure sores on one foot and his buttocks. He was in a board and care for the last two months and when I returned from a five day respite, I went to see him and he was jerking violently, he had been placed on pureed food and he looked terrible.

He went in weighing 141 and was now 120 lbs. I was outraged and insisted that we take him to his PCP. After arriving, the doctor said that there was definetly something wrong even though at the time his vitals were normal. By the time he was admitted his temp was 104. He was in sepsis. The next 24 hours are crucial even though he isn't responding well to the antibiotics.

I am devastated to say the least and feeling horribly guilty. I placed him in this board and care (which came highly recommended) in December because he was still walking and moving about but had become increasingly difficult and would fight me and his caregiver when we tried to change him or bathe him. I couldn't physically care for him any longer.

This home was four blocks away and I visited him every day. I started to notice a decline and was upset at some things that the home was doing, like leaving him in a recliner for hours on end. He had developed the foot sore so they would not let him walk anymore. He became weaker.

Would he have declined this rapidly had he been home? I don't know and perhaps I never will. He has an Advanced Health Directive with a DNR and we discussed it. But let me tell you, carrying out his wishes will not be easy. The doctors say even if he survives, he will never go back to where he was before he got sick.

I can go on second guessing what I should have done but in the end it wouldn't have mattered because in the end this disease will win.

I knew this day would come. A part of me says it is for the best considering his disease. But I don't want to let go. I want to hang on and hold his hand and touch his face, even if he no longer knows me. I want the comfort of his existence. I don't want to live in this life without him but I know I must. God, I hate this disease. My lover, my partner, my best friend is slipping over the precipice and I can't hold onto him.

Saturday, November 19, 2011

Hitting the Wall

"Hitting the Wall" is the phrase that long distance runners use when they are at a critical point in their race. It is that point that the strength, and energy in the body seems to disappear and they feel that they cannot continue. They push themselves through this feeling and somehow it passes and they finish the race. In my journey and marathon in dealing with my husband's dementia, I have hit the wall. I feel at times that I can no longer stand up to the challenges of this disease. It is winning and I am desperately trying just to stay in the race. But this is a race I cannot , will not win.

My husband's functioning is declining rapidly now. He is a simple child that must be bathed, fed and told how to sit, to put one foot in a shoe and then the other. He has become completely incontinent but will fight any attempts to clean him up. It takes superhuman strength to get clothes off and on him. He will not eat unless you feed him, although he can hold a fork or spoon in his hand, he does not know what to do with them. I have hired a home caregiver but I must be present to calm him when we change him because he becomes agitated. He sits and stares blankly at nothing. His moments of cognition are small little snippets of time. He said, "Thank you," the other day when I put a sweater on him. It was a surprise, a moment and then it was gone. I have lost the desire to try and engage him. I am too busy just tending to his physical needs now.

Yes, I have hit the wall and I feel I have lost, I cannot go on. I have pushed myself through other battles. I have seen the look on other faces in my Alzheimer's support group. The tired, strained, and defeated look that I now have.

Saturday, December 18, 2010


Staging is a tool that most doctors use in following the progression of Alzheimer's in patients. There are various forms of staging. One is the number system 1 through 7, another is just Early, Middle, and Late. In staging which is not altogether perfect, one can track and prepare for the current place a patient may be in. My husband is in the Middle stage of the disease. He can still dress himself, bathe, perform basic functions, eating, toileting and the like by himself....although with supervision and instruction. He responds to simple directions and seems to understand conversations when it is one on one. His short term memory is almost gone. He will forget that you told him several minutes ago that his coffee is on the table. Sometimes he doesn't know where the table is. You ask him to sit down on the couch and he will turn in circles unable to locate the couch unless you take his hand and guide him to it. I had read about this stage and was somewhat prepared for it.

However, what I have found missing in all that I have researched and read is there seems to be an absence of staging for us, the caregiver, the spouse, the family of the patient. So in the process of my own experiences in dealing with this disease, I have come to realize that we too go through stages. The early stage is one of denial. Yes, he/she has Alzheimer's but with medication holding it, the disease, at bay he will have a "little" memory loss but will be himself for a long time. I can deal with that...memory loss. I will be his memory. Besides, some memories are best forgotten.

Then, the early middle stage, anger, impatience, resentment set in. Expectations are still high and at every turn are completely dashed. No, we can't travel as we had once planned. No, we are no longer able to enjoy the quality of life we once had together. Life becomes a series of doctors' appointments, arrangements with senior day care, making all of the decisions and doing all the tasks that you once shared.

Then the middle stage, letting go. The realization sets in that the life you both once had is over, that major changes are taking place and with each day, you let go of memories. Yes, you let go of memories. It becomes necessary for survival. You cannot cling to what was, you begin to live in the moment, the now because it changes hour to hour, day to day. Your mindset as a caregiver takes over. You are no longer a partner, a spouse, a friend. You are the one source of strength, comfort and care.

The late stage is one of disconnect. This is the hardest stage for us. I have witnessed it in some of the people in my support group. You come to understand what you must do for your loved one and yourself. And while guilt is strong in the beginning it is overcome by the reality that you can no longer meet the demands of the disease.

I love my husband, and will hold the memory of him in my heart. I still hug him, hold him and enjoy the warmth of his presence. When my father died, I remember clinging to an old sweater of his that he wore daily. It smelled of him and it gave me solace in my grief. It is now that same feeling when I touch the hand of the man that was my husband. I miss him and for the moment that touch gives me solace in my grief.

Sunday, May 16, 2010

A Savvy Caregiver

I have recently completed a six-week training program for caregivers sponsored by the Alzheimer's association. It is designed to give caregivers knowledge, strategies and management tools in their roles, better yet, "jobs" in caring for their loved one with dementia. It was an extremely informative and helpful program and I recommend it highly for anyone struggling with caring for someone with dementia.

Personally, it has empowered me and it has released me. However, the process continues and each day as we (my husband and I) struggle with this disease, nothing is predictable and everything can change from hour to hour. Confusion is the key word, and not just for him, but for me as well. How can he be lucid, and hints of himself one minute, and then suddenly, stare blankly at me, not recognizing where he is or who I am? I am dealing with a moving target. My response level is better, my understanding and tolerance has increased.

I have now taken over control of our lives, his life. This transition wasn't easy. It wasn't a role I relished. Admittedly, I am a bit of a control freak but I've always liked having a strong independent partner to counter me, to provide the balance in my life, to ground me. Decision making was previously shared. While my background as an administrator has prepared me somewhat for this role now all the decisions are my sole responsibility and it can be a bit scary. My decisions can be life altering for him as well as for me. If and when do I make the decision to "place" him in a nursing care facility? Should we sell our home and move to a smaller more managable place? How do I manage our estate wisely? These are concerns that I would discuss with a partner.

I no longer have a partner, a spouse who responds, who cares, who knows. I have a person who is childlike, at times difficult and helpless, in my care who will never get better no matter how well I care for him. This disease is progressive and it is global. It affects not only memory but a person's entire range of thinking abilities and I am more aware of this each day.

But rather than mourn the loss, I have made peace with it. My expectations are now more realistic and therefore, it has released me. It has released me to make choices without guilt for him and myself. Traveling without him will become easier because I know it is as hard on him as it is on me. Planning to take better care of myself and therefore, able to better care for him has become a priority. I can now leave him in the care of others, knowing he is safe, involved and content. And I am able to enjoy the moments of connection with him however brief and spontaneous.

This is a challenging and awful disease. It is a cancer of the soul, it erodes the essence of an individual, it shrinks the brain until there is nothing left but the shell. Medications at the moment are designed only to slow it down. There is no cure.

Therefore, one must disconnect, must stop looking for the person inside the familiar physical being. One must be a caregiver to someone who will never benefit long term from the loving care that you provide. The best you can provide is safety, security and comfort and only in the moment. There will never be acknowledgement, or appreciation. There is no payoff.

Unless you count the strength, the fortitude, the personal sense of value you have acquired. You learn to appreciate the smallest of victories and enjoy the gifts of each day in your life.
Friends who have remained your allies and family who love and support you become all important as sources of comfort and joy.

Yes, I have become a savvy caregiver and I have learned incredible skills in caring for him and most of

Thursday, December 10, 2009

Lions and Tigers and Bears, Oh, My

We have progressed to an interesting but frightening stage with this disease. The hallucinations and delusions have begun. I read about them but nothing has prepared me for this. It started rather slowly, a comment about visitors in the house. "Where did everyone go?" I would at first argue that there was never anyone here and then finally resorted to... "They have all gone home." It seemed to satisfy him.

Then he began imagining visits from people. "They were here. I sat and had a conversation with them. Two young men came in and tried to take my money from me. I fought them off."

I put the Christmas tree up. The next night he informed me. "What a beautiful tree. Adele did a beautiful job, don't you agree?" I responded, "Yes, she did." He then asked me, "So how long have you been working for the company?" I said I was retired. He smiled and said, "That's nice. I wish Adele would retire. "

He imagines people and creatures darting in and out of the house. "Did you see that boy/cat ...he ran out so fast."

A few nights ago, he awakened me, "There is an alligator in the bathroom." I had placed a nightlight in the bathroom to make it easier for him to navigate at night. Perhaps, the shadows startled him. He got up agitated. I reassured him. I turned on the bathroom light. He said, "It moved. Did you see it?" I became upset and insisted there couldn't possibly be an alligator in our bathroom. Then I realized logic no longer works and I remembered what I used to do when my grandchildren were afraid of creatures in their room at night. I opened the window and shooed the alligator out.

The doctor has prescribed medication that should calm these episodes down. But I find this disease both frustrating and with some perverted curiosity of mine, fascinating. His brain is obviously short circuiting but are these delusions part of dreams that have become his reality? My husband is slipping away but I am ever watchful of his mind's demise and I want to learn as much as I can so that somehow that knowledge will serve others. Meanwhile, I am prepared to battle alligators and the like when they invade our home.

Monday, October 19, 2009

Letting go of Normal

I had had a frustrating day. I was venting, complaining to my son about my husband's inability to understand simple instructions, being confused about the same thing over and over again. He should be able to pour himself a cup of coffee, he should know the difference between a roll of paper towels and toilet paper. He should.......and my son interrupted me. "Mom, you are expecting him to be normal, he isn't, he has Alzheimers. You need to let go of your expectations" The cold splash of his words hit me. After all this time of living with my husband and his slow descent into the middle stages of his dementia, I finally reached the turning point of coming to terms with the reality of this disease. Normal doesn't exist in our home anymore. I have let go. Normal is coming downstairs to have a morning cup of coffee and conversation with my husband. Now it is explaining everyday that we are married and I am the Adele that he refers to in the abstract. Normal is having a partner in marriage. Now it is having a full grown man becoming delusional, confused and more and more dependent on me for the most basic needs. Normal was being able to go to the grocery store alone or an art class. Now I cannot leave him for even several minutes for fear what he might do in his panic. I have let go of normal. Acceptance is part of dealing with this disease. As I look across the table at the man I love who is now the shell of the man I knew I realize each day will take him farther and farther away from me. Now I don't try to explain or rationalize, I fib. "When will we go home?" he asks. "We're spending the night here", I respond. "We will go home tomorrow." "Did you leave a note for Adele?" "Yes, I did." It has made life a little easier. We live in a strange world now, a world of twists and turns and sudden unexplained behaviors. There is no rhyme or reason to his strange questions and responses. And I know that nothing can stop this downward spiral. Nothing will bring him back to me. So I must learn to live with and accept this new relationship. This alien in the body of my husband. Yes, normal doesn't exist in our home anymore.