Caregiving: A Difficult Role

Being a caregiver for an older adult is a tough job. Caregivers are faced with decisions everyday. Throughout the caregiving ecperience, people second guess themselves about every day care. You may ask yourself "what would my loved one do if were me receiving the care"? You find yourself trying to hang on to anything that might indicate a wrong diagnosis.

Accepting a diagnosis such as cancer, Alzheimer's disease, MS, or Parkinson's disease is very hard to do. As each day passes, there are new challenges. It can be a surreal experience. It takes a team to handle the ever changing situation as you do your best to keep your loved one safe and to keep yourself from becoming burned out.

You must be sure your loved one is safe in their own home. In many cases, movement can deteriorate as a disease progresses, so safety and prevention of falls become a primary concern.

Alzheimer’s disease patients may awaken at night and must be supervised to insure they don't wander away from the home. The job of a caregiver is so taxing that it is best handled by a family team if possible.

Each family member can take on a different role, doing what each are best at. Some may be able to sit by the patient and talk and make the loved one smile. Others can tackle the legal issues and paperwork that seems endless. Everyone can give all that they can and do the best at what they know how. Not everyone is good or comfortable in the same role.

Consider the story of Bettty. She is 58 years old and the sole caregiver to her husband, John, 64 years old, who was diagnosed with primary-progressive multiple sclerosis, three months following his retirement. He is paralyzed from the upper chest downwards-and is losing ground every day. By necessity Betty has learned to use power tools, do plumbing chores, get urine out of the carpet, recognize possible pressure sores and dress a 6’5", 240 pound dead weight.

All the errands, car servicing and driving are her responsibility. She does all the cooking, shopping, cleaning and laundry and has learned to give haircuts because she has found that the outside world really isn’t wheelchair accessible.

She misses the hugs, the snuggling, the hand holding, the love making, the dancing, and the strong shoulder to lean on. Depression, loneliness, hopelessness, and fear (including fear of getting sick herself and not being able to care for her husband and the fear of what will happen to her) – and guilt because she feels those things –are constant companions.

She needs help finding affordable long term care insurance that takes into consideration the fact that MS (and other chronic illness) patients can live decades while totally physically incapacitated. She needs a central clearing house of services available to assist her in caring for her husband and home.

It is important for families to reach out for help. Don’t be embarrassed by the things your loved one may say or do. They are ill and people will understand. Seek the help of friends, your church, social services, and if possible, a geriatric care manager. The job of caregiver is too big for one person regardless age or background. Eventually you will need help and you shouldn’t wait until the disease has taken a physical and mental toll on you along with your loved one. Go to local support groups or support groups on line.

If you live in Berks County, PA and would like a listing of local support services, please contact me at the confidential e-mail link on the right side of this blog page.