Imagine waking up every morning and not knowing where you are or how you got there. For people with dementia or Alzheimer’s this can quickly become a reality. Now imagine that you are the loved one, the caregiver of this person. It is your job to ease their fears, care for them, keep them safe, comfort them, make sure they take their medicine, make sure they eat properly, all the day to day stuff that needs to be done.
In the United States, it is estimated that over 5 million people are living with Alzheimer’s. It is also estimated that 15.4 million people in the United States are caregivers to someone suffering from Alzheimer’s or other forms of dementia. These numbers, according to Alz.org, are just an insight to how this disease can affect the patient and their loved ones. Most caregivers are spouses or children of the patient. This can lead to a huge role reversal and is not always a welcomed new role. Imagine being the one in the family that everyone looked to for warmth and comfort, answers to problems, help with day to day activities and then all the sudden this isn’t in your capabilities due to the disease. Now those that often looked to you are the ones that have to take care of you. As a spouse, the now care giver can feel resentment or disappointment. The one they have shared so much of their life with is not the same person anymore. They are not able to do the same things, take part in the house hold chores, and be a true partner they once were. What if you are the child now taking on the parental role because your parent is suffering from Alzheimer’s and needs you as a caregiver. That same type of resentment and disappointment can lie in this new relationship as well.
The day in the life of a caregiver is nonstop. You awaken to see if the “patient” is awake yet. You get breakfast going, set up the medicines for the day, tidy up. You may need to assist with bathroom needs, grooming needs; you may need to find ways to occupy the person. At times anger and or depression may need to be addressed and can become another part of the day for the caregiver. Many caregivers must take on this role that requires so much of them while they are raising their own family, have their own career, and have their own household and obligations. Many times the caregiver feels as if they need to clone themselves in order to get it all done. This stress can lead to problems for the loved one with Alzheimer’s, the caregiver, and the caregivers other family members. This can all have a domino effect. Imagine caring for your elder parent and trying to raise your own family and tend to your own young. Many caregivers still maintain outside employment on top of everything else. So you not only have the stress of being the caregiver in one area, the parent in another, you could have work related stress as well. This can lead anyone to a meltdown.
Many organizations exist that offer caregivers support and relief of some sort. One organization in particular is Alzheimer’s Association. They offer support groups and resources across the country. I visited a support group meeting in Southfield and was amazed by the diverse group that gathered. Yu had young and old, male and female, all different races and cultures. It really shed light on the fact that Alzheimer’s can affect anyone and everyone. It doesn’t attack one race, one gender, one age, one nationality; it is spread across the board. When it does attack, it affects more than just the person suffering from Alzheimer’s. It affects their loved ones as well.
At the meeting that I attended, there was much discussion about the cost associated with Alzheimer’s. Alz.org estimates that the cost of Alzheimer’s in 2012 was $ 203 billion. $34 billion of that total was considered out of pocket expenses. Expenses not covered by health insurance, Medicare, Medicaid. These expenses seem to rack up quickly and are the result of anything from housing