There are some critical steps to surviving beyond dementia caregiving. First, seek support. You are not alone. Don’t allow the disease to isolate you.
Find your network
Build a network of family and friends to help. Look for online and local disease-specific support groups. If one support group does not feel right, try another until you find the one most helpful. Facebook offers many options to join a closed group caring for people with the diagnosis you may be dealing with, so search for them. Only those living the disease and those caring for them understand what is needed, so seek others who are dementia care partners for support. They will emotionally support you and understand your daily life.
Dementia is not something you do alone, as a care partner, it truly takes a village. You must find those who will support you, give you respite, not judge you and be there for you along the road. Building your “village” takes trial and error. If someone is not helping, feel free to replace them with someone who truly helps. Remember, some people are great at visiting, others are great at picking up the groceries; find their strength and use it to help.
Take a break
Next, find a way to get a break. Respite should be considered a prescribed medication for your wellbeing. The stress of caring for someone with dementia must be controlled. Find a local dementia respite program through your local agency on aging or a local support group suggestion. There are many day programs that reside in churches, call a few and find out if they offer these types of respite care. These day programs give you the time to attend to your own needs and take a much-needed mental break.
If you get resistance to attending a day program, suggest that the facility has asked for help and would like them to volunteer. Some people even give the facility money to pay the person at the end of the day, as though they are employed. It might take a while to adjust, but day programs are needed for socialization and your respite. Even one day a week can offer you a break.
Although it may take planning, try to schedule at least a two-night respite every three to six months. Without an overnight break, you will burn out. Find a way to make it happen, either with paid people or with friends and family. This mental break and total release from responsibility is what will keep you going and help you survive dementia caregiving.
Build routine and get the right tools
It is very important to have a daily routine, both for you and the person with dementia. Keeping a schedule will calm the person and yourself. Wake up at the same time, eat meals at the same times, go to bed at the same time. Make a schedule for chores as well. Monday is laundry, Tuesday is shopping, etc., will let everyone know what is happening. You can even keep a large calendar with appointments in plain sight.
Using dementia-friendly equipment in your hands-on daily tasks will help ease your duties and make it easier for those with dementia as well. To find the equipment you might need, contact an occupational therapist, as they can offer suggestions on modifying your environment to meet the needs of your particular situation. You can also Google dementia equipment to find things that might help. A large display clock with date, day, time and even alarms for toileting is a good investment. Equipment to help you move people with motor difficulties are also good options. Special eating utensils and chairs that help you move them up to the table are helpful.
Watch Teepa Snow videos on YouTube; they give you practical advice on handling many situations like bathing, dressing, feeding and wandering. Take advantage of any free caregiver classes in your area and online. Your local Area Agency on Aging will have a list of classes. If you are under 65, still call the agency, they have the resources you might need. Hone your skills for success.
Educate yourself
Learn everything you can about the type of dementia you are dealing with, as knowledge is power. Most medical professionals know very little about dementia of all types, but particularly the earlier onset dementias. You must become an advocate and care partner. This will make you feel empowered in times of stress.
Not all dementia is the same. Even within a specific diagnosis, each person can be different in their needs and behaviors. Only you know the person you care for, so trust yourself. Look for things that trigger behavior, think of ways to communicate before speech is lost. Live in the here and now, but prepare for the future. Just don’t dwell on what might happen, as it might never happen.
Detach person from disease
Most importantly, in order to live beyond dementia caregiving, you must emotionally separate the disease from the person. Dementia is a constant and progressive loss. Seek professional help in managing this extended grieving of the living. In order to execute your daily routine of care, you must assign the losses and behaviors to the disease, not the person. This emotional detachment will save your sanity. This does not imply that you no longer love and care for them, it means you know the disease is causing the behaviors, not the person.
My best advice for dementia care partners is to be kind to yourself. Use humor, and don’t sweat the small stuff. You will never be perfect; don’t try. Remember, no one ever died from not showering, so pick your battles based on their safety and your sanity. Finally, do not get ahead of the disease. Yes, it is progressive, but no one knows the progression of your loved one, so live in the moment. Prepare for the future, but do not live in the future.
For further resources, you can contact Sharon Hall at dementianeeds.blogspot.com