The Silent Ghost of Dementia…

Imagine waking up next to your husband with whom you have shared a home and life for over 40 years. On this particular day, your husband does not know who you are. He looks at you with a somewhat blank look and slowly you notice a look of panic spread across his face. A face that you have caressed and loved for all of these years. The panic turns to fright and he tells you to ‘get out of his house’ as if you are a stranger. You try to tell him who you are and get close to him so he can actually see for himself who you are. You even grab the family photo from the bedside table to prove to him you are indeed his wife. Eventually some recognition does set in. He tells you that you do look somewhat familiar but he can’t remember your name. You tell him that is okay and are just grateful he has some recognition. Inside, you know that this situation will only get worse and that eventually he will not have any recollection of who you are at all. What will you do then?

The above situation is not uncommon in the life of someone caring for a loved one who has Dementia. My heart is heavy today as I think about the responsibilities that many folks face every day looking after aging loved ones. In my family, several matriarchs and patriarchs of the different family groups have been diagnosed with Alzheimer’s Disease or Dementia. My husband’s family is also being affected by these dreaded diseases. Even the rural neighborhood in which we live has changed drastically over the last few years because of Dementia or other similar diagnoses that have required additional care and facility placement for our neighbors.

As someone who has always been drawn to the elderly and who has spent many, many years in the field of geriatrics, I understand the stress that Alzheimer’s Disease, Dementia or other memory impairments can cause for the patient as well as for the caregiver. Alzheimer’s Disease and Dementia have a drastic impact on families and societies as a whole, physically, psychologically and economically. Did you know that Dementia is NOT a normal part of aging? Or that 47.5 MILLION people live with Dementia worldwide? In fact, amazingly, a new case of Dementia is diagnosed every 4 seconds! And this number is expected to increase! As baby boomers age and life expectancy increases, taking care of this population of loved ones needs to be a top priority. Support for caregivers also tops the list of priorities as does awareness and advocacy.

Dementia is a disease that is frequently misunderstood. Patients are sometimes discriminated against by those who do not fully understand the condition. This can result in a feeling of shame and disgrace. As a result, many patients affected (as well as their caregivers) become isolated to avoid embarrassing situations. This isolation only compounds the problem, as emotional support is thus limited and the complete responsibility for daily care and guidance falls to the caregiver.

What can be done to help? Studies have shown that early detection can improve the quality of life for Dementia patients as well as for their family members. Medications exist that can help to delay the progression of the disease. The family physician can provide guidance with medication and treatment. Of course memory care facilities are also an option but many folks are unable to afford them or have made the decision to keep their loved one at home for as long as possible. Home care agencies can also help. But for someone with memory impairments, strangers coming into their home can produce feelings of anxiety and even paranoia. Even small changes in routine can upset the Dementia patient. Familiarity and routine can help to prevent this. Outside caregivers should maintain a set schedule with the same worker coming into the home each day.

Emotional and spiritual support for the caregiver and other family members is extremely important. Free Alzheimer’s Disease and Dementia support groups exist across the country and on-line. These groups are led by members who understand. Most of them have firsthand experience in the role of caregiver. They can also provide around-the-clock support even after the group meeting is over. Respite services are also available. These services supply a worker for a short period of time to allow the caregiver to leave the premises and take a break. In the state of Illinois, this service is available free through the Illinois Department on Aging. Check with the local senior center for assistance and information on respite and other services that are available. Support and guidance can also be obtained from books, newsletters and on-line. Information and knowledge is key to understanding the diagnosis and developing a plan of care that works.

The last several lines of the poem “Beatitudes for Friends of the Elderly”, by Elizabeth Clark, sums the goal of caregiving up perfectly to me.
‘Blessed are they who make it known that I am loved, respected and not alone.
Blessed are they who will ease the days of my journey home in loving ways.’

In my opinion, our senior citizens are one of our greatest assets. They built this great country and deserve to be cared for with dignity and respect. Although currently there is no cure for Alzheimer’s Disease or Dementia, help is out there to limit the stress on the patient, caregiver and other family members. The journey does not have to be taken alone. Learn more about how you can help.

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