Currently, there are more than five million adults in the U.S., age 65 or older, who have Alzheimer’s disease, and this number continues to grow as the population ages and people live longer. The American Association of Retired People estimates that 70% of those with Alzheimer’s live at home and are primarily cared for by unpaid family members and friends. That’s a huge number.
Dementia exacts a terrible toll on those who are doing the caregiving. How can you as the caregiver provide the best possible assistance for your loved one and also maintain your own physical and mental health? Here are some tips that I’ve learned from my own caregiving experiences. Hopefully, this advice will be helpful as you go through the journey that is dementia.
Sadly, the person under your care is slowing losing cognitive function. As the disease progresses, the patient’s personality can change dramatically — sometimes ebbing away entirely. You’ll probably think: “My loved one is gone and the only thing left is the physical body.” That fact is very difficult to accept. Yet, the more accepting you are about the progressive stages, the better for you. Allow yourself to grieve, but don’t get so stuck in the grief that you are unable to cope with the current situation. Joining a support group, journaling and talking with friends and family can help you vent your feelings.
Although you may not want to do it, handling financial and legal issues during the earlier stages will ease headaches and heartache later on. Dementia can be horribly expensive. State laws can vary, so check online or get counsel from an elder law attorney. From a legal standpoint, you will need the following at a minimum: 1) Appoint one or two trustworthy individuals as power of attorney who will handle day-to-day finances. 2) Prepare a trust or will. 3) Clearly spell out a legal document with an end-of-life plan and make sure your medical record contains a copy of this plan. While it is more accepted today to talk about death, it’s never an easy subject. Where does the patient want to reside if he or she can no longer live at home? Does your loved one want his or her life to be extended if the quality of life is minimal? What type of burial does the person want? How will any money, property or personal possessions be divided after the patient’s death?
Your relationship with the dementia patient will change dramatically as the disease progresses. For the child, suddenly you are in charge and the new relationship puts you in the parenting role. For the spouse, the dynamics of the relationship will change. No longer partners – you become more of the leader with your spouse becoming (an often reluctant) follower. Patience, understanding and forgiveness must become your new mantra.
The Blame Game
The person with dementia does not want this disease. Don’t make him or her feel any worse by constantly correcting, shaming or assigning blame. That may sound shocking, but resentment is a common feeling among caregivers. It doesn’t make you a bad person. Accepting your new reality isn’t easy, but do think before you react and be kind to the patient as well as yourself.
Don’t Try to Be Superman
Actually superwoman is probably a better word choice since the vast majority of caregivers are female. However, for both men and women, it is vital that the caregiver practice self-care. If your health suffers, you can’t be there when your loved one needs you. Dementia is usually a marathon, so take advantage of day care and respite options. And, providing care for an Alzheimer’s patient can be physically taxing. Be smart. If the patient is twice your size and needs help with most everything, then the chances of you being physically injured is likely. You are human and not a fictionalized super hero.
The reality of dementia is scary and depressing. It can consume the patient as well as the individuals providing the caregiving.
However, until a cure is found we must care for our loved ones to the very best of our ability. To do this effectively — and often for a long period of time — caregivers must pace themselves and make the best choices. Caregivers must seek out and accept assistance, be patient with the patient, work toward acceptance, adjust as the disease progresses, and plan ahead for legal and medical decisions.
The caregiving experience is indeed life-changing but you can maintain your own wellbeing and come out stronger on the other side.