The Disease from Hell

A Black Hole ~ Where Memories Fade
It wasn't too many years ago she was able to enjoy her children and grand children. It wasn't that long ago when she was driving herself to the store and to her hair appointments. Bill paying, grocery shopping, social events and all the things we all do everyday became her sole responsibility after the loss of her husband. My mother did these things, and much more, with perfection for many years. Her years of employment as an executive with a manufacturing company taught her many skills that she was also able to use in everyday life. The job also gave her a since of worth, a boost to her self-esteem, and a new day to look forward to with every sunrise. My mother loved her job and the responsibility that came with it.

Sound familiar? Of course it does. It not only describes my mother, but millions of other people who get up every day and go to work, raise families, nurture relationships, and all the other things we do in our lives. Our family was typical and very lucky. Divorce never entered into the picture, both parents worked full-time jobs and saved money for the future, and shared fun times with us as children. As with any family of seven, we had our up and downs. Fortunately, and we were extremely fortunate, our family never suffered any catastrophic illnesses or other bad luck that would interfere with daily living. Much can be attributed to the “life structure” our parents built for us.

When our father died suddenly from a heart attack, she was forced to do something we knew would be difficult for mother; to live and thrive on her own. She was a very private person who kept many of her feelings inside. Outwardly, my mother was a very confident, very “together” lady. I do not remember her ever, and I mean ever, complaining about even so much as a headache. She dealt with everyday challenges in her own way – quietly.

Eventually, her job ended and she was forced to realize that retirement was now her in her immediate future; a fact that she did not want to accept and did not like. But, being the trooper she was, she seemed to take it in stride and make the best of things at that time. It was a blessing in disguise, as she met a gentleman I will call Jack. Their relationship flourished and grew into something resembling a fairy tale. Over the years they were together constantly. Jack was a retired dentist who loved to play golf, go hunting and do all the things retired men love to do. There was one difference in this man, however; he loved having my mother with him no matter what he was doing.

Another major change in her life came when Jack had a stroke and passed away suddenly. This was devastating for her. Again, mother accepted death of a loved one as another challenge in her life. Over the next few years, she would meet new friends and become better friends with a female neighbor. She would go to the mall and walk, continued to shop and go to her beautician for her weekly hair appointments. Our family is located in different cities around Texas so regular visits did not occur as often as we would have liked. Although frequent, families, jobs, and school limited our visits to her home in Corpus Christi. Telephone calls however, were almost daily from her children and from her to us.

With a picture of this strong-willed and independent woman painted you will understand why the next stage of her life was so traumatic for everyone concerned, especially her. Nobody questions another person making reminder notes - until those notes refer to everyday, routine events. Nobody questions someone having a minor accident in a vehicle – until minor accidents occur multiple times in a short period of time. We did not wonder about conversations when the same subject would be discussed several times in the same phone call. There were so many signs for several years that we did not see as signs of a problem. Sound familiar? It became apparent after some time that mother was having difficulty remembering short term issues. Family would go to visit and she would forget they were in the house and she would become frightened. The beautician called to inform us about the multiple minor automobile accidents. She noticed the small dents in mother’s car. During one visit groceries were found in the truck of the car that had never been taken into the house from several days before.

Thinking back, there were indications for quite some time that something was wrong. It was like a black hole; thoughts went in but did not re-surface. We just didn’t look at them as serious medical problems until the children started comparing notes. It was decision time. We had to devise a plan to take our mother to a medical professional for an evaluation. Keep in mind; she was someone who went to the doctor for “regular” visits. Being the private person that she was, we were never privy to any problems she might be having. A plan was put into motion.

We contacted her primary physician and voiced our concerns about her failing short term memory, vehicle accidents, and overall well-being. About one half the time, she would appear to be perfectly normal; able to answer questions, able to remember things from many years before, able to communicate well, and was thriving. During a lunch with her many weeks after that appointment, she expressed her concern about her doctor questioning her about her memory problems. She indicated that he had told her that family members were concerned about her. For one thing, according to her – that was none of our business. Secondly, we had no business contacting her doctor without telling her in advance.

Sounding even more familiar? This is a family tragedy that is repeating itself millions of times over in the United States. The doctor’s report to us was positive for severe dementia and he informed us that Alzheimer’s disease can only be diagnosed from an autopsy. However, an MRI of the brain can actually show certain changes in the brain of a patient with suspected Alzheimer’s disease. He agreed to admit her for a full psychological and physical evaluation. This hospital admission was to become a journey of pain and sorrow no one should have to endure.

After ten days in the hospital it was time to hear the doctor’s report which would come directly from the doctor in a conference room with her children present. Mother was in her room with no knowledge that this meeting was taking place. The doctor had much to say in his final diagnosis including his opinion that our mother suffered from severe depression and had been since the death of our father some twenty years before - a diagnosis that shocked us all. He also indicated that she was suffering from severe dementia and was more than likely in the early stages of Alzheimer’s disease. Of course, we were given the lengthy psychological reports to review; and again, we were shocked at what we read.

The answers she gave to questions were strange at best. She could not remember her children’s names, birthdays, and her own place of birth, where she used to work or what she did at her job. After several hours with her primary physician and after meeting with others involved in the evaluation, we were told our mother could not and should not live alone. It was explained that many times Alzheimer’s patients will lose their way when traveling somewhere even to familiar places like the grocery store. They will often think their oven is the clothes drier and turn it on and put clothes in to dry causing fires. During the summer they will turn on the heat and vice versa. The list of possibilities was endless and very frightening.

We had visited several assisted living centers in Houston prior to this meeting and had agreed on one in case we were advised to move our mother out of her home. We felt Houston was best because she would be close to at least two of her daughters who lived there. The next day was the day she was to be released from the hospital. It was decided that we would take mother directly to Houston without going to her home first. It was our thought that this would bring on unnecessary anxiety for her. Bags were packed, personal items were selected, and the long trip from Corpus Christi to Houston was underway. Would she realize we were not going toward her home? Would she be angry? Would we be able to explain to her what was going on?

Those answers were answered as soon as we pulled out of the hospital parking lot. She noticed we were traveling in the wrong direction to go to her home. Yes, she was angry at our explanation that the house was being treated for termites (which it was not, but it was the only explanation we could come up with at the time). And no, we were not able to explain anything to her as her demeanor went from angry to sad. She cried for most of the first two hours of the trip and then suddenly asked, “Where are we going?”.
This is how most of the trip went prior to reaching our destination at the assisted living center she would soon call home.

Once there she refused to get out of the car. After an hour of coaxing she decided to go in and see what all the fuss was about. We took her into her private room where other family members had already set up many of her personal items. Once in her room she seemed to be comfortable; quiet, but comfortable. Two of us spent the first night with her. She wondered why we were not leaving and going home to Houston. We finally realized that she thought she was back in her home in Corpus Christi.

It was difficult for us to accept the fact that there is no medication to fix this illness. We realized that love and patience would be the only “medicine” we could offer. Mother spent four years at the assisted living facility. Her final year there was spent in the Mental Support Unit where Alzheimer’s patients often spend their final stages of this disease. It is a locked area of the facility where the residents do not have access to exits. It was obvious that her condition was deteriorating faster than we had expected. She eventually reached a point where she was unable to eat on her own and required total care. The center informed the family that we would have to move mother to a regular nursing home, a suggestion we did not accept.

After much discussion and prayer, it was our decision to move mother into our home during the final stages of this illness. Before you make the same decision we did, please talk with others who have done the same. We had an advantage in that we spent much time at the center with her and cared for her there on a regular basis; therefore, we had an idea of what to expect. Had we not had that advantage it would have been an extremely difficult period of adjustment not only for her, but for our family. This new journey would test our patience and our faith on a daily basis. Even with all the prior care knowledge, and all the resources available to us, it was still an overwhelming experience.

My background has always included a full-time job away from the medical and/or caregiver field. This was a major learning experience for me. But, she was my mother and I would have done whatever necessary to make her final months as pleasant and comfortable as possible. The seven months she spent in our home were filled with every emotion imaginable. There were times of happiness, sadness, extreme frustration, and confusion. It is the happiness we focus on now. Her condition continued to deteriorate weekly. From being able to eat on her own and speak a few words, to the inability to eat and not speaking at all. There were times we thought she would get better and then we would realize that was not going to happen.

My primary reason for writing this is to offer an insight into this illness and how relentless it can be for everyone involved. It is my wish to share my experience with others who may be going down the same path as a caregiver for a family member. It is the end of life stage that I also wish to offer some solace. The ‘end of life’ is such a final term. As difficult as it was, sharing with her the end of her life was also a time of love and trust that not everyone is able to participate in with a family member. It offers a chance to say good-bye, an opportunity we do not always get. I have never personally witnessed a death, so to be a part of my mother’s final hours was an extremely emotionally event in my life. One that I can say was indeed a life-changing experience for me.

During the last two months of my mother’s life I spent countless hours on the Internet researching the process of death; what to expect, what to look for, and everything in between. The process of death is a subject none of us wants to delve into, however I knew it needed to be done. The body goes through a process of “shutting down” in the final stage of life and I had no clue what this process would entail. The hospice nurses who were available to our family provided some insight as well. Over the last few days and hours I had time to reflect on her life and her life’s impact on my own. It was apparent to me that she would let me know when the time was near. It was a trust that had developed over time and even though she could not tell me, I knew she trusted me to take care of her in her final hours. It was time of reflection, of letting go of someone we cared for; one of the people in my life who made me who I am. Our family was with her at the time of her death, a memory that will last forever.

It was during this time that I realized none of us is guaranteed eighty years, or ten years. I also realized that her days going to work, doing household chores, and raising five children had more of an affect on me than I have ever realized. Our time here on Earth should be an eventful time. Everything we do has an effect on someone else. There were times during her illness when I felt her life was meaningless because she could not remember important things. In the end I understood that everything she did had an impact on someone. And the memories were still there, deep in the crevices of her mind, but still there.

Obviously, many details were not included herein. Details, all of which all made this journey complete. For anyone dealing with a family member with any type of dementia or Alzheimer’s type illness, be aware of even minor changes in behavior. There are news stories on a regular basis about family members becoming lost or injured due to this type of illness. Be diligent in your efforts to provide support to that family member. If it means taking their car from them, do it. If it means taking them to the store yourself, do it. One of the hardest things we had to do was take away what independence our mother had left. But we did not want her to be a news story. Again, my goal is to provide some insight into caring for someone with a disease that our Pastor described as, “the disease from Hell”.