The news that your loved one has a dementia diagnosis can weigh heavily on your heart and mind. You may feel shocked, sad, angry or even relieved to finally have a medical diagnosis. If your loved one is experiencing dementia symptoms, there are several steps you can take to help your family cope with this life-altering diagnosis.
Understanding the Diagnosis
A dementia diagnosis may be very confusing and upsetting at first. Take a few deep breaths. Allow yourself and your family members enough time to calmly process the diagnosis.
Your loved one’s physician should clearly explain their condition and prognosis, along with details about their current and future needs. Don’t be afraid to ask questions of the medical team. Pay attention to your observations about your loved one’s condition. You may have observed changes at home that the physician and care team may need to know about. Keeping the lines of communication open between you, your family and your relative’s medical team will ensure that everyone is on the same page.
Having Critical Conversations
Conversations about memory loss are never easy. If your loved one has always been strong-willed and independent, it may be particularly difficult for them to accept the inevitable life changes and dependency that will accompany their disease. Have a loving but clear conversation with your relative about their future needs.
Discuss a plan for the day when they won’t be able to live alone anymore. It is best to get your loved one’s affairs in order as soon as possible. This will ensure that they have as much control as possible over their future medical, financial and long term care decisions. You’ll need to discuss and resolve necessary legal issues. Decide who will oversee the power of attorney for health and financial issues. This will help you, your family and your loved one will be more at ease knowing that their affairs are in good hands.
Managing Your Expectations
The progression of memory loss can vary based on the type of disease and the person involved. However, there are some symptoms you can generally expect to see in your loved one. You might find that they’re laundry was piling up, or that they hadn’t showered in days, or that haven’t eaten anything but ice cream for several days. These are little things, but when added up, may have been early signs of their dementia.
Your loved one’s experience with dementia will unfold at its own pace. That said, when the memory loss becomes pronounced, try to be patient when loved one fails to recall a family member or a precious memory. Try not to pressure them to remember or to react negatively when they are agitated or confused. Modify your expectations to make room for changes in their behavior. Your loved one can sense your emotions and may become upset when you are upset. If you find yourself feeling overwhelmed or emotional, it’s perfectly okay to excuse yourself and regroup. Find ways to educated yourself and consider joining a support group. Doing this will help you manage your expectations.
Deciding How to Move Forward
Memory loss comes with a lot of unpredictability and potentially a lot of chaos. Having a game plan in place will reduce stress and add much-needed certainty to your life. To the extent that it is practical, create a schedule to make family visits, meals and daily tasks easier to manage. A calm, structured environment will help your family member remain relaxed and focused.
No two families are alike. It’s important for all caregivers to be completely honest about how much of the physical and financial responsibility they will be able to take on. Dementia unfolds in stages, so there will be ongoing adjustments needed to the home and to the any caregiver’s workload.
Caring For Yourself and Your Family
There is no doubt that caring for a loved one with memory loss can be a very draining and taxing experience. In many cases, the burden falls on one or two key family members or friends. For those caring for loved ones at home, feelings of being overwhelmed or “burned out” can lead to increased stress and may result in serious health problems.
It is essential to take adequate time for self-care. Get regular exercise and proper nutrition. Put a respite system in place that gives caretakers ample time to rest and recharge. Find a local caregiver support group, online community and try to spend quality time with friends and family. A loving circle of support goes a long way toward staving off mental and physical exhaustion.
Transitioning to Managed Care
There may come a day that your family member needs a level of care that you are not able to provide. A memory care community or managed home care can provide a specialized level of care in a comfortable and supportive setting. Memory care communitiescan provide enrichment activities and therapies specifically tailored to the needs of memory care patients. Many home health care providers can assist your family with occupational, physical and speech therapies, as well as skilled nursing.
During the transition to a memory care community, your family member may feel disoriented or unsure during the transition. Your loved one and your family will look to you for support during this transition. Maintain a calm and reassuring presence as they settle into their new environment. If you’re stressed and unsure, it may lead them to feel stressed and unsure as well. Find a community that you’re secure with and confident in. You’ll be better able to pass those feelings along to your loved one, if you’re truly feeling them yourself.
It may not be possible to prepare for every aspect of this difficult diagnosis. Education, patience and taking care of yourself are critical tools for coping with dementia in your family. With the right support system and preplanning, you will be able to successfully handle the details and focus on spending quality time with your loved one.