It was time to say goodbye - not just because I had been with Mom for over a week and had to return to my home 1,500 miles away - but also because it was to be the final goodbye. I knew it was the last time we would look deeply into each other's eyes, hold hands, and perhaps, even share a smile.
Mom was in the final stage of Alzheimer’s and I didn't know if I could properly take advantage of the rare gift of knowing when and how our relationship as mother-daughter would come to an end. Somewhere in her mind and heart I couldn't help but believe that Mom knew she was approaching the time when she would meet her Creator. It was that strong unwavering belief of hers that gave me the courage to hold back my tears and hold her hand, instead. If she had the courage to die, then surely I had the strength to tell her what was on my heart. Even when my mother could not utter a word, her character and never-failing spirit spoke volumes.
One of the pastors that visited with Mom and with us was startled to hear me admit that I had not only said my goodbyes and expressed my love and appreciation for the fabulous mother God had bestowed on me, but I had also given Mom permission to let go. "All you have to do, Mom, is reach out to Jesus and He will take your hand." If she was waiting for her daughter’s permission to take the final steps into God's arms, then it was my duty to grant it.
The doctor told us some weeks before that it was time for Hospice care, and we quietly made those arrangements and began to make the last part of Mom's journey with her. She seemed to be oblivious to what was happening as everyone began gathering up of her things and moving her from one hospital room into another. Sister and I never formally talked to her about it - our family wasn't big on talking about life's sadder transitions - but, Mom surprised us and during one of those pastoral visits asked Rev. Bill to contact her husband and start planning her funeral. Rev. Bill and I both smiled at the poignancy of the request, for my father had passed away ten years before her.
* * *
That is part of the deeply perplexing nature of Alzheimer's - where a person can live both in the past and in the future all in the same breath, yet be completely oblivious of the present. A compassionate family caregiver understands this co-existence of all phases of life in the same moment and allows the person the freedom to live in whatever time period their mind may choose to inhabit, even with one foot in the past and one somewhere else in their own reality.
Some Alzheimer's persons live in fear of the future, particularly if told that their future means that they are nearing death. The final stage of our loved one's life is a time to draw even nearer to each other and to make the passing from the physical to the eternal as peaceful as any of us would hope for. It is a time to bring closure… to resolve lingering issues… to prepare to say goodbye.
“A Bandaid for the Caregiver” is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities. In each difficult moment there lies an opportunity for love.
Journey with courage,
Elaine
Journey with courage,
Elaine
THE BANDAID BOX...
Family members can become better caregivers through compassion, patience, and humor – or they can become embittered and angry. Choose compassion for you and your Mom or Dad. Hold fast to the fact that for a loved one with Alzheimer’s, death and dying are peaceful and calming events in the cycle of life.
“And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for these things have passed away.” Revelation 21:4
“I believe God is managing affairs and that He doesn’t need any advice from me. With God in charge, I believe everything will work out for the best in the end. So, what is there to worry about.”
Henry Ford (1863-1947)
Families can anticipate when it is time for the final goodbyes as the final stages of death approach by being vigilant and recognizing the various physical changes that will occur. Understanding and gently moving through these stages together rather than fighting them is extremely helpful in coping with your parent’s passing. Knowing what to expect brings a sense of peace and normalcy in the dying process.
- 1-3 mos prior to death… Withdrawal from the world and people, decreased food intake, increased sleep, going inside self, and less communication.
- 1-2 wks prior to death… Disorientation, agitation, talking with the unseen, confusion, picking at clothes, loss of color, decreased blood pressure, changes in pulse, respiration irregularities, congestion, not eating, change in body temperature, and sleeping but responsive.
- Day or hours prior to death… Surge of energy, decrease in blood pressure, irregular breathing with periods of stopping and starting, restlessness or no activity, purplish extremities, pulse weak and hard to find, decreased urine output, stops eating and taking in fluids, and eyes glassy, teary and half open.
- Minutes before death… Gulping for air and cannot be awakened.
ACCEPTANCE FOR YOURSELF…
Give yourself permission to grieve the loss of your parent, even before he or she passes – for with Alzheimer’s there are many losses along the journey. All feelings of anger, sadness, guilt, relief, conflict, and fear are normal and expected during the time of life’s passing.
Gentle Reminder:
When your Mom or Dad reaches this time, they have forgotten that they cannot remember. It no longer matters to them that they do not know what day it is or who you are to them. Mom or Dad is at peace and no longer has insight into the right or wrong, happiness or sadness of their condition. They are at peace. The end stage is the kindest stage of all.
CAREGIVING TIPS…
There are many practical things that you can do to help make Mom more comfortable. As she reaches the end stages, she will want to sleep more, which brings on concerns about skin care. Pressure sores can be painful and become infected. Change Mom’s position in bed every two hours, making sure that any places where her feet, legs, arms or back continually rest and rub on the sheets are protected with pillows, blankets or cotton gauze.
Change adult diapers every two hours, as well, to prevent rashes and infection.
Dad’s appetite will dwindle away and chewing and swallowing will become more difficult. He may be able to tolerate smaller bites and soft food before moving into pureed food and liquids. Do not be discouraged or think you are not doing a good job of caregiving if he refuses to eat. It is simply another sign that the body is slowing down and does not need the nourishment.
At some point in the dying process, Mom may become agitated or restless. Try to calm her with soothing music, talking in quiet tones, holding her hands, or stroking her hair. The extreme uneasiness will pass. Try not to fight her, but gently redirect her attention when possible and provide a calm and soothing atmosphere. It may be beneficial to limit visitors during this time until she reaches a state of calm once again.
Fevers or chills are not uncommon. Treat Dad’s chills with extra blankets and the fever with Acetaminophen, which is also an effective painkiller. Cold compresses or ice packs are also an effective way to reduce a fever. Wrap ice packs in towels before applying to his forehead, back of the neck, or under his armpits.
Dress your parent in a cotton t-shirt or night gown that moves freely and can be easily changed. Avoid tight socks or undergarments that will restrict already compromised circulation in Mom’s feet or legs.
Nonverbal communication of discomfort includes grimacing, moaning, guarding an area of pain, added confusion, or an increase in heart rate and respiration. When Acetaminophen is no longer sufficient to handle her pain, consult Mom’s healthcare professional.
Please read the following website for more detailed information on caring for a dying loved one. http://dying.about.com/od/thedyingprocess/a/care_143_dying_2.htm
ABOUT ALZHEIMER’S…
In spite of continued research, Alzheimer’s remains incurable. Although, individuals do not die of AD, the body’s defense mechanisms become so weakened that it cannot continue to function. “At some point after the mind has been lost to this devastating disease, the body will be lost as well.” http://www.nia.nih.gov/alzheimers/features/alzheimers-disease-and-end-life-issues
As the disease moves into the end-of-life stage, certain steps can be taken to provide a measure of physical and emotional comfort. It is essential, however, that as soon as Alzheimer’s, or any other type of debilitating disease, is diagnosed, that the individual and family members prepare a Medical Directive to guide healthcare professionals in providing the end-of-life care in keeping with their wishes. Such a directive provides for the decision-making process to be undertaken with the least amount of duress and can allow the last days of an AD patient to end life without physical pain, emotional conflict or unnecessary guilt.
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