Caregiving can be a slippery slope. You start by taking Dad to the doctor or picking up some groceries for Mom. Then they need a little bit more, and a little bit more. Medicare home health care is only available for up to 35 hours a week and not all home health care agencies will make a simple meal or make sure medicines are taken when they should be. You find yourself dropping by on your way to work, calling in the evening and spending more time on the weekend cooking and cleaning and checking on things.
If one of your parents is a veteran, you are in luck: the VA might pay you something for the work you do. Medicaid considers any non-medical help something a son or daughter should do without compensation. It will allow you to be paid only if you can document the medical help you provide and, preferably, your medical training. More and more you find yourself substituting not just for the certified nurse’s assistant but for the nurse as well. You clean and refill the J-PEG. You give shots. You change dressings. You pray that you are doing it right.
Meanwhile, your siblings, who are not involved, have no idea of how much you do and what a toll it is taking on you, on your family, and on your ability to earn and save for your own retirement.
Maybe you should give them a checklist. They might better understand the need to help out or chip in. They may not complain when Mom signs a Lady Bird Deed leaving the house to you (free of Medicaid Estate Recovery).
Have they any idea what do you do every day? Maybe you should write it down for them.
Daily Plan for a Caregiver
- Bathe, dress and groom your loved one. Help them use the toilet. Change their diapers. Help them move from one place to another, providing “stand by” assistance to catch them when they fall. Supervise them to prevent wandering. Cook. Make sure they get the right kind and amount of food, cut up or run through the blender. Make sure they get enough liquids.
- Chart their blood pressure, temperature, weight, sleep patterns, bowel movements, urination, appetite and meals.
- Make sure they take their medicines at the right time in the right doses. Place and replace the catheter. Change sterile dressings. Apply lotions and massage their hands, feet and limbs. Make sure they move or are moved every two hours to prevent bed sores.
- Schedule medical appointments, religious and other activities, nursing care, therapy, certified nurse’s assistants and time with family and friends.
- Attend medical appointments, bringing a list of questions and information to share and taking notes. Keep these in a notebook together with other medical information, insurance information and a copy of the Durable Power of Attorney, Medical Power of Attorney and all other medical directives.
- Buy groceries, medicine and medical supplies. Clean house. Cook. Do the laundry. Iron. Walk the dog. Change the cat’s litter box. Feed the fish.
- Train substitute and additional caregivers including new home health care workers. Make lists for them. Check that they are following through.
- Make the home as senior friendly as possible, researching and buying door levers and grab bars, magnifiers, arthritic-friendly utensils, hearing aids and enhanced telephones, bedside alarm mats and a wheelchair with brakes (not paid for by Medicare).
- Provide mental stimulation and help with physical exercise.
- Educate yourself about chronic conditions and health changes. Research new approaches and technologies.
- Try to schedule 30 minutes each day to take a walk.
- Try to schedule one activity which gives you pleasure and takes you out of the situation.
- Try to schedule five days of respite, temporarily transferring them to an assisted living facility or skilled nursing home.
- Combat feelings of guilt that you cannot do more for the people who did so much for you. Combat resentment and anger. Combat fear about what will happen when you grow old.
Some days you may feel like giving up. Someday, particularly if there is severe cognitive decline, you may have to: we all need to sleep.
For now, and later, when your job is done, you know that you are someone your parents – and you – can be proud of. You know that, despite the daily challenges and the overwhelming fatigue, you are the person you want to be.
Elder law attorney, Terry Garrett, is a member of the National Academy of Elder Law Attorneys and is an Approved Guardianship Attorney. She assists people in elder law, estate and special needs planning, guardianship and settling estates. She graduated with honors from Cornell University. She was on the Dean’s List at Wharton Business School. She earned her J.D. at Columbia Law School, receiving the Parker Award and a Mellon Fellowship.