Archive for January, 2005

After the Diagnosis

Getting a diagnosis of a life threatening illness is always a shock. To everyone, even to the doctor . It doesn’t matter if it was preceded by scores of medical tests, deep apprehension over time and a warning from the doctor that the results could be grave. Nothing can adequately prepare you for the words terminal illness.

Perhaps the doctor discussed the results with you, explained what they meant, and gave you some sense of what to anticipate in the days ahead. As the doctor presented the findings you likely experienced an intense sense of urgency. You and your loved one didn’t really focus on the lab results; all you saw was the potential end of his life and pain arriving as a set of data on paper.

After the Diagnosis

Life is changing.

The news of a terminal illness is a watershed event. The way your loved one perceives his life, the decisions he makes, the priorities he establishes, and the memories he treasures will all undergo radical transformations. Life will never be the same again for him or those who love him.

As strength wanes and emotions fluctuate, the patterns you have learned to call normal also shift. Shock, trauma and physical debilitation from the terminal illness will impact every aspect of your loved one’s life. Expect fluctuations in his personality. One minute he will be bouncing around the house, chatting nervously about everything except his illness. The next minute he will be glued to the computer researching everything on the internet that pertains to a medication. Ten minutes later he will be staring blankly into the future. He will be silent and brooding.

His attention to normal activities may also become erratic. One week he will go to the gym every day and eat only organically grown vegetables. The next week he’ll stay in his pajamas for three days straight and you catch him smoking on the back porch. He hasn’t smoked for twenty years. “What’s the difference?” he asks shrugging, “I’m going to die, anyway.”

Layers of shock and grief take up space in the brain. There will be forgetfulness, and he may have trouble concentrating. He could become indecisive. His feelings of competence diminish and he could feel very needy.

Things around the house and in your environment will change, too. Laundry won’t get done. He may skip some meals, cancel appointments–or not show up at all. Some days he may stay in bed all day watching infomercials on television.

Some of these changes are transitory. Others will wax and wane until the end.

If your loved one was the manager of the household, someone will have to provide assistance. The children still need to get to school. The family still needs to eat and laundry must be done. Bills need to be paid. The lawn still needs to be mowed. The dog still needs to be walked. Food still has to be bought and then cooked. Whatever roles your loved one was used to performing will have to be delegated elsewhere. But they still need to be done. At some point, you will need to get help.

If money is not an issue, hire someone to do the household maintenance so you can concentrate on the changes in your life. If you don’t have a lot of money, you may need to enlist family and friends to keep the wheels spinning. Learn how to delegate. Often church communities provide this kind of help. Talk with your minister, priest or rabbi. In some states, Medicaid insurance programs include a benefit called In Home Supportive Services (IHSS). A housekeeper comes to the home for a predetermined number of hours each week. This person provides personal care, assistance with household chores, shopping, cooking and running errands.

How Your Life Will Change as a Caregiver:

Your loved one’s declining health will bring about many changes in your own life. Some of the changes will occur gradually while others happen quite suddenly. For example:

· You will have less time to participate in your usual activities.

· You may have to make changes to the very basic aspects of your life. Perhaps you need to move from your home in the suburbs to care for a parent in another city.

· People who once slept snuggly in the same bed may no longer be able to share a bedroom. Medical equipment and physical incapacity may make you feel shut out of your loved one’s life.

· Relationships also change. Disease and treatment can cause physical changes and disfigurement. Your loved one may no longer feel comfortable with the easy intimacy you once enjoyed. He may no longer undress in your presence. He may also withdraw emotionally as he struggles to cope with unwanted changes.

· Your roles and your responsibilities to each other will become complex. You are no longer simply the partner, sibling, lover or child. You are now also the caregiver and, in some cases, the decision-maker. Both of you may feel uncomfortable with this change and there may be resentment.

In our next posting we will discuss these changes in greater detail and offer suggestions for dealing with the inevitable feelings of loss and grief. We welcome your input and look forward to sharing your thoughts and ideas on this site.
Pam and Jerry

Popularity: 26% [?]

Welcome to our blog

The time has come,

The walrus said

To talk of many things …

Lewis Carroll

Through the Looking Glass

There is nothing harder, sadder or more solitary than being the caregiver for a loved one who is failing. Whether it is the seemingly interminable suffering of a cherished husband or wife who struggles with Alzheimers or the sudden robbery of a stroke or heart attack, caregivers are charged with the physical care and emotional nurture of someone who was once their healthy, active life partner. Your household, your schedule, your entire life is subject to sudden upset and change. You may be struggling with illness, yourself. You may feel overwhelmed by the tasks you are now asked to assume. Worst of all, you know that no matter how hard you work, no matter how fervently you pray, no matter how deeply you love … this is not a battle you are likely to win. Throughout this entire affair you must also keep your own soul alive as you confront the pain of the great good-bye.

This web site is for you. It is here that you will find some comfort, some solace and be able to make some small sense of all this chaos and grief. Every week we will post a new article written for you to inform you, support you and, hopefully, lift your spirits to go on one more day.

Who are we?

We are medical and mental health professionals with many years of experience working with terminally ill patients and their families. We are also friends who have ourselves suffered personal losses and have walked the difficult road you are now traveling.

Pam Umann, MSW

Pam is a medical social worker with a specialization in life threatening illness. Pam has worked in a variety of settings including hospitals, home care agencies and hospice organizations. Pam is a certified hypnotherapist and a Reiki practitioner. In addition to her work in medical settings, she has developed and facilitated support groups, weekend retreats and ongoing classes throughout the San Francisco Bay Area and Monterey Bay area to help people identify and access the strength of their own spiritual natures.

Jerry Griffin, MD, PharmD

Jerry was the Medical Director for Visiting Nurses Hospice of Salinas Valley Memorial Health Care District and Hospice of the Central Coast for many years. He has a big heart for terminally ill patients and the families/caretakers of these special people. He is also a retired Army doctor, and was a pharmacology professor in his earlier professional life. Terminal and palliative care has become a truly satisfying part of his medical practice.

You are here, too

We will also be hosting chat sessions and open forums for you to share with us and with each other and to draw strength from developing relationships with other caregivers. We will be happy to post your thoughts and to respond personally to your comments and questions. On the right side of this page you will find our email links. We look forward to hearing from you.

Please check back weekly for new postings and new topics for discussion and please participate with your ideas, thoughts and suggestions. In the end, this web site is more yours than ours.

Till next week –

Pam and Jerry

Popularity: 26% [?]


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