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Sherry Russell BCBT BCETS

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Alzheimer's: Sinking Memories – Sinking Hearts
By Sherry Russell BCBT BCETS   
Rated "G" by the Author.
Last edited: Thursday, July 15, 2004
Posted: Thursday, July 15, 2004

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If you are a person with Alzheimer’s or a person who loves someone in a stage of Alzheimer’s keep in mind the impact of memory – not only the impact of their loss of memory but the impact of your enduring one.

Sinking Memories - Sinking Hearts

By Sherry Russell

If you are like me, then you have experienced the craziness of times when you thought you surely must be losing your mind. How else could life have turned so upside down and inside out? Yet, my brain cells will steady and continue to connect to my memory of hard lessons. Like a perpetual jack-in-the-box my past history will pop up nagging me about the pros and cons of the fine art of repeating my actions and thoughts leading to the same old results. As I reason my way back to calm waters with a change of new defined behaviors my life will be upright once again until the next round of waves crash my security in some way or another. Such is life!

The fact is, no matter how topsy turvey life becomes most of us have the luxury of fine tuned abilities to determine attitudes and plans of action. What if you didn’t have the ability? What if a person were having a little trouble remembering things, a little trouble recalling names or words – what if a person, such as yourself, were diagnosed as being in the early stages of Alzheimer’s Disease?

According to the Alzheimer’s Association approximately 4 million Americans have this dreaded disease. They continue on to state that one person in every ten over the age of 65 and nearly half of those over 85 have Alzheimer’s disease. It is estimated that over 14 million Americans will have this disease by 2050 unless a prevention or cure is found. Alzheimer’s progresses differently for everyone with only the unexpected being the constant factor. From hallucinations to major daily changes the disturbances of dealing with this confusing disease is a traumatic experience for all. Alzheimer’s disease is not a normal part of aging rather a disease of the brain that results in impaired memory, thinking, and behavior.

The verb bereave comes from an English word meaning to deprive or rob, and it means to deprive someone of a much loved person, especially through death. Alzheimer’s robs a person of themselves. Alzheimer’s robs the family from a much loved person while they are still bound to this earth in a physical shell. We as a society are starting to see and communicate about caregiving, the needs for help for caregivers, the seriousness of the impact of caregiving and the grief of being a caregiver. The grief of a caregiver is not only for the one that is being cared for but for the caregiver’s own interrupted life. What about the grief a person who is diagnosed with this robbing disease must feel? When you have the capacity to understand the depth of the shredding of self that is about to happen it is to experience a sinking heart channeled out with deep canals of grief.

A lot of people with Alzheimer’s continue to live at home even as the disease progresses. This disease often gives the perception that the progression is a rapid one but in fact the course of the disease is usually prolonged. At some point a spouse or family member will have to take charge and manage the household and care. Coming to terms with the disease when a person is first diagnosed is a fear challenged uncomfortableness that only the person facing it can describe.

If you are a person facing this challenge it is important to communicate to the people in your life about the disease and outline the changes that you will all face together. Can you imagine knowing the day will come when you can’t bathe, dress, or groom yourself? The reality that your dignity as a human being, a functioning member of your family, will inch by inch dissolve floating away into the heady atmosphere of gloom.

Alzheimer’s affects a person’s mental activity, speaking, movement, ability to make meaning out of one or more of their senses as well as being able bring together and co-ordinate information for the purpose of decision making. Once the diagnosis has been made, future treatments should be laid out. The physician takes a strong leadership position for the person’s care while involving the family and discussing the appropriate environment now and for the future needs.

Here are ways to share your diagnosis and to keep life moving forward as long as possible.

    • First educate yourself and others about the disease

    • Let others know that this is going to change your life but you will still cherish loved ones company.

    • Communicate your fears about the diagnosis.

    • Allow others to communicate their feelings.

    • Let the people in your life know when and how you may need their help and support

    • Continue to participate in as many of your regular activities as possible.

    • Realize that you may have to modify activities as your abilities change.

    • Think about many of the chores you do automatically and write them down. You may change air filters on a regular basis, check the fire alarm, batteries in flashlights and radios, check the pantry for food items, check electrical appliances, mail and accounts.

    • Make and keep a list of questions and concerns to discuss with loved ones when you see them.

    • Understand at some point you may not be able to drive. Discuss and have a plan for that decision to be made and adhered to.

    • When you can no longer drive, try to have a plan in place for transportation options. Your local Alzheimer’s Association will have information available.

As the days move forward and the diagnosis settles in, it is wise to gather as much information as practicable. Information about caregiving services in your area, the costs, housekeeping, and nursing homes will be helpful. If you have pets you will want to make sure the pets will be taken care of in the fashion you choose for them. This is a time when not only grief and fear is in the heaviness of the air seeded with the unknown but you will be forced to reckon with the importance of dealing with life ending issues for a life that may not end for twenty years. When the memory starts to fade, here are some ways to deal with the challenges of a changing memory.

    • Keep a pencil and pad with you to write things down when you think of them.

    • Post a schedule of the things you do every day.

    • Do difficult tasks during the times of the day when you normally feel the best.

    • Do not rush yourself when trying to complete a task. Be patient with yourself. Realize that tasks that once seemed easy such as a household chore may now be ambitious.

    • Make a schedule for meal times and medication times.

    • If you have a large bulletin board for posting things, post important phone numbers.

    • Post pictures of people who will be visiting you and taking care of you. Put their names of the pictures.

    • Use large print for easy reading.

    • Make a daily exercise routine and post it.

    • Have someone call you and remind you of all these posting. You may find it best to have one person call you at meal times and medication times and have another call you for other activities. Sharing the duties helps everyone and keeps you communicating with different people.

    • Place important phone numbers in large print next to all the phones in the house.

    • Label all your medications and label your pill organizer.

    • Keep a large calendar and mark off the days. This will help you keep track of time.

    • Place labels on pantry doors, cabinets, and drawers that describe the contents.

    • Place labels on all drawers or cabinets where you may need to remember what is in them or others may need to know where things are.

    • Post reminders to turn off lights, lock doors, and turn off appliances.

    • Have someone help you organize your home so things are easier to find and clutter is streamlined.

    • Keep a notebook of all necessary information in regards to anything and everything someone may need to know about you in order to make decisions, take care of finances, talking with the Doctor etc.

    • If you live by yourself arrange for someone to help with meals and daily chores.

    • Have any checks that you will be receiving go to direct deposit.

    • Make arrangements for help with paying your bills and determine when you need to sign a power of attorney. There is a limited and a full power of attorney.

    • Make sure that someone close by has an extra house key.

    • Take a break if you are trying something and it seems too difficult. Ask for help.

    • When talking with someone take your time; don’t be afraid to ask someone to repeat themselves, or to write down what they are saying.

    • Have a quiet place where you can get away from distractions and too much noise.

To say a person diagnosed with Alzheimer’s disease will have a wide range of emotions is like saying humans blend from life to death with nary a knee scrape. It is so much more complicated and soul wrenching than words can explain. This mind capturing disease requires a person to receive assistance of support services, legal and fiscal resources as well as nutrition and home care solutions. All can be overwhelming and difficult to solve. The loved ones that surround the person are central to treatment.

The first pangs of grief a person freshly diagnosed feels are forked for the person knows they are feeling the anquish because they still have insight into the future however they also know that the grief will resolve as the mental activity declines.

If you are a person with Alzheimer’s or a person who loves someone in a stage of Alzheimer’s keep in mind the impact of memory – not only the impact of their loss of memory but the impact of your enduring one.

Yes, there may be a time when you or a family member utter those famous Alzheimer words that you hear so often: he/she is no longer the person I knew. No, they are not; yet, we owe it to our loved ones with this disease to focus on the rippling effect their living had on our life. There is an invisible string of the past connecting to the future. A certain facial expression, a certain hobby, a dislike, a passion, a religion, and even life itself was passed on to us because that string of the past exists. So, if your heart is sinking with sorrow, look around to find your special bobbers. The bobbers that will float your sinking heart are the ones that remind you love is eternal and that your memories are alive in your hearts and in your dreams when you are not the one affected by Alzheimer’s disease.

Web Site: The Bright Side - Wings of Support

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Reviewed by Miller Caldwell 12/1/2004
You write as one who is deeply involved with a suffererer. When I was recently diagnosed as suffering from dementia, it tore my world apart. However with a loving wife and two daughters I have managed to start writing and now have a self-book on memory to commend to Dementia and Altzheimer sufferers. I am sure a cure is not so far away. Till then bear with us and never forget even on the days i put the kettle in the fridge, that I love you all.

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