An excerpt from A Caregiver’s Love Story.
Many people will become caregivers in their lifetime, or on the other hand, may need one. A “caregiver” is anyone who gives basic assistance and cares for someone who might be ill, disabled, or frail. There are a wide variety of tasks done to assist someone in their daily lives. Balancing a checkbook, writing checks, grocery shopping, doctor appointments, giving medication, or helping with eating, bathing, and dressing are all basic caregiving duties. These duties may occur gradually over time or overnight. For the most part, the caregivers are family, friends, and neighbors and do not get paid. This may feel like something that just comes naturally when you love someone and want to help them when they need it, but it can go on for years and take a physical and even financial toll on caregivers and the family.
Many caregivers in the United States care for an adult with cognitive impairment. This person may have difficulty with one or more of the basic functions of their brain, like perception, memory loss, concentration, and reasoning skills. The diagnosis may be slightly different for the patient, but often, the caregivers for any medical issue share common problems and situations, and ultimately strategies.
Cognitive impairment is not only the loss of brain function; it also can affect how a person thinks, acts, or feels. These add to the challenge of communicating with someone with cognitive impairment as an ordinary conversation can become challenging and frustrating with the person who has difficulty remembering from one moment to the next. These folks require special care, including 24-hour supervision, communication techniques, and management of difficult behavior.
You may also be the caregiver for someone who is ill, has been in the hospital and is recovering, in a wheelchair, or has aged beyond their ability to care for themselves. All caregiving situations have some general strategies you may find helpful. I’m also listing some resources for you to get help if you need it when your caregiving has gone beyond your comfort or knowledge level – in other words, if you are at your wit’s end and don’t know what else to do.
1. Establish a baseline of information. If you go to the doctor with your concerns about your loved one, it is helpful to have a more concise time frame for when they started showing symptoms of needing more care. Answering the question, “How long has he/she been forgetting to take their meds?” With, “Oh, I don’t know, maybe a month or two.” Is not helpful. It would be better to have an answer like, “I noticed once a week, for the last two months he/she forgets their pills at night before bed.”
By keeping closer track of what is going on with your loved one, it can give the doctor or health care worker a better guide for helping with the problem and offering advice. Other questions may be, “Do they forget to pay their bills? How long has this gone on?” “Do they eat a normal diet?” “Are they bothering to cook?”
2. Go with your loved one to see their doctor. Get an accurate diagnosis, find out if there is a medication interaction going on, or if what seems like dementia is really Parkinson’s or Alzheimer’s that have some treatment options available. Don’t assume they are just aging, and nothing can be done for them. A confirmed diagnosis is helpful in planning for the future and determining treatment options.
If there has been a surgery or a stay in the hospital, get all the information you can on what an expected recovery time might be, what the nurses and therapists did in the hospital as far as helping the patient get well, such as physical therapy. Have a plan of action when your loved one comes home from the hospital.
3. Talk to doctors, health care and social service providers, or people with similar circumstances to get some help. Education is powerful when you know what is going on and what is expected in their recovery. Read books or pamphlets the doctor may have about the disease or illness. Store all your information in a notebook, so you can refer to it when needed and take it with you to doctor or therapy appointments.
4. Determine what your loved one’s needs are as far as physical help or help with daily activities like cooking, cleaning, shopping, dressing, eating, and bathing. Consider changing the normal times they do things so you can be there or when someone else is available to be there. Bathing in the evening, instead of the morning, for instance. Preparing small meals to put in the freezer to be cooked later, if they can use a microwave or oven.
- Place notes on cabinets reminding them where the dishes or silverware are located.
- Do the shopping or banking for them so they can be at home and resting instead of leaving the house.
- Manage medications by using pill containers marked with the days and times of the week.
- Determine if they need any safety equipment at home, like walkers or canes.
- Install handles in the shower or bathroom to prevent falls.
5. Make an outline of all the care needs your loved one has. This can help formulate a plan if professional help is needed, and a care plan must be made, so an outside caregiver has the best opportunity of helping where it’s needed. Telling a caregiver, “My husband falls a lot, so you have to watch him” is not as helpful or specific enough to get the best care for your loved one. It would be more helpful to tell them, “My husband needs help getting out of a chair, uses a walker and cannot stand in the shower without help.”
These plans are always subject to change, either adding or subtracting required needs for the patient. Be open to these changes. Have a backup plan if a caregiver other than yourself gets sick or can’t help you on a scheduled day.
6. Get a full and accurate look at finances. This is always difficult to ask if you have not been involved with them from the start. Find out about long-term care policies that may have been paid for, current obligations as far as house and car payments. What are the expenses for running the house?
You might consider getting a lawyer or financial planner to help with this as it is easier for them to ask the tough questions and reduce family tensions over money. Make a list of savings and checking accounts, investments, and credit cards. Make sure your name is on all accounts so you can make changes to them if needed. Keep all these records in one place so you can refer to them when the time comes to make changes or move your loved one to another level of care, such as assisted living.
7. Review all legal documents. This can be a delicate subject but will ensure your loved one’s final wishes are carried out. You may want to have an attorney bring up these issues and oversee the paperwork. This will take the pressure off you and help you be reassured you are legally prepared for the future.
You will also want to put Social Security numbers, birth and marriage certificates, divorce decrees, property settlements, military records, income tax returns, wills, trust agreements, and burial arrangements in a safe, easy-to-access place.
8. Safety proof your home. Make special note of safety hazards when helping an impaired patient. Take special care with the following:
- Fire hazards: stoves, cigarettes, lighters, and matches
- Sharp objects: knives, razors, and sewing needles
- Poisons: medications and hazardous household products
- Remove loose rugs, furniture, and cluttered pathways
- Check lighting at night in hallways
- Lower the water heater temperature to avoid burns
- Cars and driving: Do not allow an impaired person to drive
- Remove hoses, tools, gates, uneven pathways outside
- Watch for clothing and footwear that may cause falls
- Mark emergency exits
- If your loved one wanders, place a door alarm on all exits
- Identification bracelet
- Bathroom grab bars and grips
- No rugs in the bathroom or on hardwood floors, or use non-skid rugs or mats
- Use paper cups rather than glass
- Supervise food and diet to monitor a healthy intake of food
- Keep emergency phone numbers handy
- Manage all medications
- Supervise alcohol and pain medications to prevent falls
9. Connect with others. Join a support group for social and emotional support as well as sharing practical information and advice. They are also safe and confidential places for caregivers to vent frustrations, share ideas, and learn from other caregivers. If you can’t leave the house, there are also online support groups that give the opportunity to meet with other caregivers nationwide.
10. Be sure to take care of yourself. This may be the last item on the list, but you will find it to be the most beneficial to your mental health while you are caring for someone else. Caregivers are more at risk for depression, heart disease, high blood pressure, and chronic illness leading to general poor health.
Here are some guidelines for yourself while you are caring for your loved one:
- Exercise daily. Even twenty minutes a day will decrease stress, help with sleep, relax muscle tension, and increase mental alertness and energy.
- Eat healthy meals and snacks. Caregivers often eat on the run, snacking on junk food or skipping meals. Try to make a habit of eating fruits and vegetables every day.
- Get adequate sleep. Lack of sleep results in exhaustion, fatigue, and low energy, and this all leads to more negative feelings, irritability, sadness, anger, and stress. Ideally, try and get six to eight hours of sleep in a 24-hour period. Arrange for someone to fill in for you during the night if you are up a lot with your loved one.
- Take care of your own medical needs. Get regular medical and dental check-ups. Inform your doctors of your caregiving role and let them know how you are coping. Caregivers are at a high risk of depression, lingering sadness, and apathy.
- Take time for yourself. Recreation of any type is necessary for renewal. Once a week, take time for yourself. Read, go out to lunch, or go for a walk, anything that takes you out of the caregiver role.
- Don’t forget to breathe. Deep breaths frequently during the day with some meditation is very helpful. There are apps you can put on your phone to help you with both.
- Remember when your life seems like it is surrounded by suffering, assess the situation, learn to live with it, and then embrace it.
Nancie Wiseman Attwater is the author of A Caregiver’s Love Story.