Emotional Roller Coaster

DianaH By DianaH, 16th Mar 2011 | Follow this author | RSS Feed
Posted in Wikinut>Family>Bereavement

Living with a disability is a challenge. But when the disability brings an end to the life of your loved one, no matter how much you do for them, it doesn't seem to be enough.


Mom had many problems with pain in her back. For that matter, we all did in our family of six. Going to the chiropractor was a regular thing. At least every other month and sometimes more for Mom. Since my younger and only brother was disabled, we had to lift him into his wheelchair. Hence the necessary visits. In 1983, my brother passed away and we all had our ways of dealing this kind of loss. We didn't realize till years later how deep of a depression Mom was in. Not much was known about depression back then. We got through it with faith and help from family and friends.

About 1998, Dad, Mom and our younger sister went camping which they did every year. Even as kids we went and loved every minute of it. They stayed about a week and would come home with a cooler full of fish which Dad filleted. We loved those fish fry nights. We were informed that Mom had fallen while trying to get into the pop-up camper. She thought it was one of her clumsy days. She went to the chiropractor a few times and got some bruising.

A year later she started having trouble walking for more than 15 to 20 minutes. She was referred to a neurologist who ran a series of tests. The results showed that she had Spinal Stenosis.

Spinal Stenosis

Lumbar spinal stenosis is a narrowing of the spinal canal in the lower back, known as the lumbar area. This narrowing occurs when the growth of bone or tissue or both reduces the size of the openings in the spinal bones. This narrowing can squeeze and irritate the nerves that branch out from the spinal cord . It can also squeeze and irritate the spinal cord itself. This may cause pain, numbness, or weakness, most often in the legs, feet, and buttocks. (WebMD.com)

She was having pain and weakness in her legs and was walking with a walker by Fall of 1999. Surgery was scheduled to correct this and she was going to go to a Rehabilitation Facility in order to strengthen her spine and legs. A few weeks went by but she said she didn't feel much better. Again she consulted her Neurologist and after going through another series of tests. They finally had a diagnosis.

What's That?

Amyotrophic lateral sclerosis, or ALS, is a disease in which certain nerve cells in the brain and spinal cord slowly die. These nerve cells are called motor neurons, and they control the muscles that allow you to move the parts of your body. ALS is also called Lou Gehrig’s disease.

People with ALS gradually become more disabled. How quickly the disease gets worse is different for everyone. Some people live with ALS for several years. But over time, ALS makes it hard to walk, speak, eat, swallow, and breathe. These problems can lead to injury, illness, and eventually death.

It can be very scary to learn that you have ALS. Talking with your doctor, getting counseling, or joining a support group may help you deal with your feelings. Your family members may also need support or counseling as your disease gets worse.

ALS is rare. Each year in the United States and most of the world, only 1 to 2 people out of 100,000 get ALS. Men get ALS slightly more often than women do. ALS can occur at any age, but it most often starts in middle-aged and older adults.1
What causes ALS?

Doctors don't know what causes ALS. In about 1 case out of 10, it runs in families.2 This means that 9 times out of 10, a person with ALS doesn't have a family member with the disease.

ALS is not contagious. So it can't be spread from one person to another.
What are the symptoms?

The first sign of ALS is often weakness in one leg, one hand, the face, or the tongue. The weakness slowly spreads to both arms and both legs. This happens because as the motor neurons slowly die, they stop sending signals to the muscles. So the muscles don't have anything telling them to move. Over time, with no signals from the motor neurons telling the muscles to move, the muscles get weaker and smaller.

Over time, ALS also causes:

Muscle twitching.
Trouble using your hands and fingers to do tasks.
Problems with speaking, swallowing, eating, walking, and breathing.

ALS usually doesn't affect the ability to think, reason, or remember things.

Just because you have muscle weakness, fatigue, stiffness, and twitching doesn't mean that you have ALS. Those symptoms can also be caused by other conditions. So talk to your doctor if you have those symptoms.
How is ALS diagnosed?

It can be hard for your doctor to tell if you have ALS. It may not be clear that you have the disease until symptoms get worse or until your doctor has done more testing. To find out if you have ALS, your doctor will do a physical exam and will ask you about your symptoms and past health. You will also have tests that show how your muscles and nerves are working.
Tests needed to confirm ALS may include:

Electromyogram (EMG), which helps measure how well nerves and muscles work.
Nerve conduction studies to test nerve function.
Muscle biopsy, which means taking a small sample of muscle tissue for testing.
Blood tests.
CT scan of the brain.
MRI of the brain.

If your doctor thinks that you have ALS, he or she may also refer you to a neurologist to make sure.
How is it treated?

There is no cure for ALS, but treatment can help you stay strong and independent for as long as possible. It can also help you avoid other problems from ALS.

Physical and occupational therapy can help you stay strong and make the most of the abilities you still have. Speech therapy can help you keep your ability to talk after problems with speech begin. And there are several medicines that doctors can use to help relieve your symptoms and keep you comfortable.
What decisions will you face as ALS progresses?

If you or a family member has ALS, learn as much as you can about the disease and how to take care of it. How much treatment you want for the problems caused by ALS is a personal choice that only you and your loved ones can make. Your values, wants, and needs are important things to think about as you make choices about your care.

As ALS symptoms get worse, you may have to choose which treatments you want for things like problems with breathing and eating. As you make these choices, keep in mind that what's right for one person with ALS may not feel right for another person. It’s important to talk about your treatment options and share your concerns with your doctor.

You may want to put your health care choices in writing. This is called an advance directive or a living will. It gives you control over your own medical care when you can't make decisions or speak for yourself. You may also want to choose a friend or family member to speak for you. This is called a durable power of attorney. Making these plans ahead of time will help make sure that your health care choices are followed.
-Courtesy of WebMD.com.

Numb Of Feelings

The doctor said Mom had it at least 3-5 years before she was diagnosed. The fall at camp, not able to stand straight and her inability to get better after her surgery were all related. Since there was no cure, we just took it one step at a time. My younger sister quit working in childcare, which she did for 10 years, to care for Mom with the help of Dad. The family was struck numb. At least that's the way I felt. It was just not fair. Mom was always the one to take care of us. Now, it was our turn.

My middle sister and I would not have been able to care for Mom the way Lil Sis did. We both had families and my hubby was disabled also. We sat down and figured out a schedule, coordinated times that we could stay with Mom so Dad n Lil Sis could get away and go shopping or do lunch. Whatever they could just so they wouldn't burn out. I have no regrets as to how much I helped. We feel we did all we could for her and we took each day and tried to make her comfortable. The simple things we needed to do for her towards the end like: changing channels on the TV, scratching the itch she couldn't reach, cleaning and grooming her nails, there was a Home Aid that gave her baths, opening up the book or bible she was reading, putting in a movie so she wouldn't get bored. This was just a few things that she needed done. She never complained about her pain. She would tell me, "I'd give anything to cook a meal again." She was a fantastic cook.

When I'm Gone...

Mom had a wonderful sense of humor and she never lost that. She loved Lays chips and asked the doctor to write a medicine script for them and he did. "There is to be at least 10 bags of Lays potato chips on hand at any time." She was thrilled since she loved eating the larger ones at the beginning of the bag and let the kids finish up the broken ones. Then she would have us open a new bag. Very sneaky she was. Now I know where I got it from.

She also kept tract of Dad, where he had been in the house and where he would put his glasses. He was constantly forgetting where he put them. She new that there would be an end to her life so she got prepared. More like she prepared us and Dad. There was a time when she gave Dad permission to marry again. He just gave her a bewildered look. "Well, if you decide to, I have some ladies in mind." Another disgusted look. "You've got to be kidding me. No I'm not getting married again." They both smiled but knew she was serious. When Middle Sis was with her at one time, she asked sis to write a poem. What a tear-jerker that was. No dry eyes when that was read. It still makes me cry. There was a list of foods that were to be made at the Repass Meal, the meal after the memorial talk of her death. Spanish Rice, Scalloped Potatoes, Goulash, KFC for Dad since he was too cheap to buy it. Salads, Baked beans and desserts. She also made sure we knew who was to make the dishes.

On November 1, 2002, Mom went into her final rest. She was 60 years old. The day before she passed away, she could barely keep her eyes open but asked if I wanted a cup of coffee. A wonderful Mom, Wife, Grandma and Hostess till the end.


Emotional, Family, Last Wish, Memorial

Meet the author

author avatar DianaH
I love poetry, crafts, spending time with friends, helping others with life, reading, playing cards.

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author avatar D in The Darling
25th Mar 2011 (#)

I feel your pain. May God be with you and the whole family. Thanks for sharing your pain.

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author avatar Denise O
22nd Apr 2011 (#)

I am so sorry for your loses Diana. What a lovely tribute you have given your mama, I just know she is looking down and smiling at her wonderful daughter. Just a lovely write. Thank you for sharing.:)

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author avatar Songbird B
22nd Apr 2011 (#)

This has brought tears to my eyes, Diana, and I truly feel for you all on the loss of a very special mum...This is a beautifully, informative article that you have written....Thank you so much for sharing this with us...Bless you...

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