by Roberta Mark Engel
The past couple of years have been complicated My retirement from my life as a middle school teacher and labor leader for a large public school system did not teach me how to provide care for my mother. My arduous two and a half year roller coaster ride with my mother ended on August 23, 2010. Dorothy’s life ended peacefully when she was ninety-two years old.
I wrote this article to help prepare for the care of our parents so we can get off the roller coaster and survive. It will provide us with no regrets, only happiness for the loss of the pain our parents experience. As you know, people are living longer and unfortunately, the aging process can be difficult. Let us make their transition into elder hood a pleasant experience. Here are some facts to help assist all of us and our families. As we age, we will potentially develop common conditions which include dementia, depression, hypertension, osteoporosis, cancer, and heart disease. Since dementia is the number one condition that we are subject to acquire in one form or another, I wanted to explain the signs and stages of this disease so we can better prepare for the care of our loved ones.
As an example, I became aware of my mother’s dementia when she was eighty-four years old. It progressed slowly until the final two years of her life. I consider us lucky because Dorothy’s Vascular Dementia was discovered late in her existence. In addition, she didn’t develop Alzheimer’s until a few months prior to her death.
To aide in our knowledge of dementia, the stages and signs are as follows. The time periods are approximate, depending on the person. I have also listed possible treatment and therapies:
The stages of dementia are as follows: MILD DEMENTIA (2-4 years) produces the difficulty to perform normally familiar tasks, memory loss that affects job skills, problems with speaking or writing coherently, disorientation of time and place, inappropriate judgment, decreased abstract thinking, misplacing things and or replacing them in unusual places, rapid mood swings, severe personality changes, loss of ingenuity, sleeping longer than usual, loss of interest in normally fun activities. The symptoms of senility (dementia) are as follows: stooped posture, wrinkled skin, decreased muscle intensity, changes in the lens and strength of the eye, fragility of bone and rigidity of the joints, hardening of the arteries, and childish behavior. In reference to my mother, she suffered from all of the above, but this mild dementia did not affect her ability to live on her own and she functioned well with mild dementia for six years. I finally convinced my mother to hire Susan, a part-time caregiver, when my mother was eighty-eight years old. Susan was employed a few days a week for a few hours a day. I wanted companionship and assistance for my mother.
During MODERATE DEMENTIA (2-10 years), my mother actually experienced decision making abilities. Dorothy knew our names, but disorientation in time and place became more obvious. Amazingly, she required no assistance with bathroom needs, eating or balance. She did need assistance in choosing the proper clothing to wear. She had prepared to go to her ninetieth birthday party in a black slip until my childhood best friend and I stopped her. That indicated to us that there was an escalating problem with her dementia. Since my mother’s diagnosis of vascular dementia, there were many mini-strokes. My caregiver became quite adept at noticing them and then calming Dorothy down after these episodes. An MRI is essential to measure the brain wave activity which allows us to understand the occurrence of TIA’s (Transient Ischemic Attacks which are stroke-like symptoms that last for 1-2 hours).
After five months at home with our part-time caregiver, she begged to go to an assisted living facility. There was an opening at the assisted living facility she desired so we moved in. An assisted living facility prepares all the meals which are eaten in a communal setting. Additional services can be purchased such as a caregiver bathing our loved ones, escorting him or her to meals, and administering medication. Each service is an additional fee. If there is a fall, the resident pushes a panic button. Dorothy had a fabulous time until she fell. She was at this facility for four months. My mother didn’t have the ability to know how or when to push the button due to her dementia. A neighbor had walked by and chose to push Dorothy’s panic button. Dorothy had a very minor fall and she was taken to the hospital.
After my mother returned to the assisted living facility a few days later, SEVERE DEMENTIA (1-3 years plus) had set in. She stayed one month longer at the facility, then I brought her home for seven months and hired round the clock care because of her inability to perform activities of daily living (personal hygiene and caring for herself or himself, dressing and undressing, eating by herself, getting out of bed, going to the bathroom, being ambulatory). She even began forget my husband’s name from time to time. She was largely unaware of recent events as her knowledge of time and place became sketchy. She became incontinent which was the worst problem. She also exhibited delusional behavior. She hit the full-time caregiver over the head because she insisted that she tried to kill her. She exhibited tremendous anxiety, agitation. Eventually, we placed her in a nursing facility where she eventually lived four months.
VERY SEVERE DEMENTIA exhibits that all verbal abilities are lost, urinary problems, incontinence, and assistance with bathroom needs, eating, and psychomotor skills. My mother had no abilities remaining. She stopped eating a few days before she died. She prepared to die after total inactivity. She developed severe dementia a couple of weeks before her death followed by very severe dementia. Dorothy passed away at the nursing facility.
Unfortunately, there is not a way to prevent the onset of dementia, but staying active in a variety of activities could help keep memory loss at bay. Playing a musical instrument, knitting, reading or playing board games help. My mother knitted and played a musical instrument. I write articles, study a foreign language, walk, dance, read, and live on two continents, to name a few. We can practice by switching the use of our hands for all of our activities for a few days. It is a great test of our cognition. Eat a balanced healthy diet. Sage oil and vitamin E might also be helpful. It is possible to treat memory loss with medications, but there are side effects. There is a hope that stem cell research offers assistance plus new drugs and new therapies.
Did you know the following? There are an estimated twenty-four million people living with some form of dementia. Without major medical intervention, this number could increase to as many as eighty-four million people who have age-related memory loss by the year 2040. Currently, there are more than five million Americans who suffer from Alzheimer’s, and it is the seventh leading cause of death in the U.S. About 13% of Americans over the age of sixty-five have Alzheimer’s and fifty percent of those over the age eighty-five will develop this or another dementia. Alzheimer’s is considered to be an inherited disease, but genetic research is still being done in order to know the specific cause for dementia in addition to the inherited component. Fun statistics!! As I mentioned, my mother developed mild Dementia at eighty-four. In addition, she developed Alzheimer’s at ninety-two. It lasted only a few months until Dorothy’s death.
We either have an elderly parent, friend, or are experiencing symptoms ourselves. It has taken me almost a year to address this article due to my grief, but knowledge is power.
I will address how to prepare quality care, estate planning and preparing for the death of a loved one in a trilogy. The first of the trilogy is regarding preparing quality care for a loved one. Hopefully these bullets will help us prepare for the care of our loved ones.
• Get an assessment from your loved one’s family doctor. Make sure that all detailed history is listed. Have the doctor do a mental status exam in order to check following instructions, memory, recall etc. Also, get a hard copy of the medical file. It will be helpful for the doctor to make his assessments and referrals.
• Don’t blame. Try to understand. We have the knowledge.
• Keep a journal. Self-expression will allow us to express our emotions in a safe and thoughtful manner. We will be given the opportunity to reflect upon the meaning and the significance of events in our life as they apply to our inner self. How about writing about a special memory that we have about our loved one? Let our loved one know that we will miss him or her, but we will carry on with his or her blessings. I shared my mother’s eulogy with her. She wasn’t able to speak, but she smiled broadly and squeezed my hand.
• Help our loved ones to prepare a legacy for others to be part of. Consider opportunities such as recording their dreams, fantasies, artwork or other visual materials that he or she would like to share with others. My mother couldn’t speak during the last few days so plan to do this throughout their illness.
• Have our loved one complete a “bucket list”. My mother wanted to go to the beach, New England, Greece, and Costa Rica.
• It is important to watch for symptoms of possible illnesses in our aging parents. Understand the basic needs of care giving are to supply assistance in the following areas: personal hygiene and caring for herself or himself, dressing and undressing, eating by oneself, getting out of bed, going to the bathroom, being ambulatory. If our parent has trouble when he or she is behind the wheel of a car, encourage them to stop driving.
• Begin hiring a caregiver if our loved one is experiencing two of the above problems. Begin with a few hours a day, a few days a week. Increase after our parent loses another basic need. I made my part-time care giver a supervisor for the live-in caregivers. As we know, our loved one’s problem will escalate after the dementia increases.
• Invite all those family members and friends to visit. This provides the person with listening, talking, and emotional support. It gives us a uniquely intimate relationship the more we visit. I was honored to have known my mother. Two and a half years prior, I may not have said that.
• After reading the stages and symptoms of Dementia, we must decide on the best care for our loved one.
• Understand the basic needs of care giving are to supply assistance in the following areas: personal hygiene, dressing and undressing, eating, getting out of bed, going to the bathroom, being ambulatory. If our parent has trouble when he or she is behind the wheel of a car, encourage them to stop driving.
We love our family. We don’t want them to suffer needlessly. The quality of life diminishes in the years prior to death. Our job is to make their lives as peaceful and meaningful as possible. Our loved one may live at home, in an assisted living facility, or a skilled nursing facility, love them as much as you can. I believe that my mother is at peace and having a great time in a better place. Here’s to you mom!!
