Caring for the Caregiver

Terri Corcoran’s husband started being afflicted by FXTAS, a genetic neurodegenerative condition, soon after their marriage. There is no cure for this, just years of slowly wasting away from brain neurons dying off.  Eventually, her husband needed full-time care, as he was mentally and physically disabled.  “I hired aides to help at home, and went through heartbreaking and excruciating years of caring for his every need, while he could barely communicate. I am so glad I could give him care at home – and love – which without me he would not have had,” she shares. Though this experience, Terri became the PR chairperson of Well Spouse Association, a peer-to- peer support organization for SPOUSAL caregivers.

There are an estimated 75 million adults in North America caring for an elderly, disabled or chronically ill family member. The pressure of being a caretaker is all-encompassing, 24/7 job. Caretakers often feel that they know the patient best and that their presence is vital for the patient’s continued survival, which is why many cannot fathom taking a day, let alone an hour to relax or have fun. The issue arises when caretakers devote so much time and attention to their loved one, that they suffer from prolonged stress, which starts to negatively affect their mood and overall health.

Dr. Lynn Fraley, a clinical mental health professional, healthcare speaker and consultant working in Washington understands this all too well as both her parents have Alzheimer’s disease. “There are times when it so very difficult for me to comprehend that my parents are no longer the people I once knew. Acceptance of what is and forging a new relationship is part of the caregiving process,” she says.

“If you were to take a bottle of soda or seltzer and shake it up, what happens? The pressure builds up on the inside. This is what life does to us! And being a caregiver is constantly ‘shaking” us up!’ explains author of A Caregiver’s Toolbox and NJ social worker Carol L. Rickler, who has 25 years’ experience working in hospital care settings teaching stress and caregiver management.

This is exactly what is happening with Mrs. Sara Finkle of Boro Park who had no other option than to admit her husband to Menorah Nursing Care located in Manhattan Beach so he can get better around the clock care after suffering from a stroke several months ago. Mrs. Finkle visits him every day. She was reluctant to place her husband there but felt she had no choice after both of them collapsed while she was trying to lift him off the bed. She realized that keeping him at home was not safe for both of them. “He was hooked up to all these wires and beeping machines and needed help bathing and using the facilities, and I just don’t have the strength to do this,” she said. She admits that this decision has been the catalyst to her own physical decline and depression.

Caregiver burnout can come on gradually and its symptoms are not as obvious as those of a cold or a cough. Oftentimes, individuals don’t even know they have it until someone else points it out. Being on call and feeling the pressure of being responsible for another human being is overwhelming to the point where it can manifest into physical symptoms of muscle pain, headaches, chest pain, upset stomach, skin and hair issues as well as psychological issues of depression, anxiety, anger and feelings of fear.

“When caring for my own aging parents, these signs became evident to me and I knew I had to find a means of coping. By taking time away (or respite) from my caregiving duties to do something I enjoyed, I was better able to relax and recharge,” says Rick Lauber, author of The Successful Caregiver Guide.

Common symptoms include perpetual fatigue, decreased interest in work or social functions or hobbies, feeling hopeless and changes in eating patterns.

Prevention

There is a reason stewardess instruct airplane passengers to give themselves oxygen before the child in their company, and that is because you are of no use to anyone if you are not secure yourself. You may think it is careless and selfish to take time out for yourself and even take a break from caregiving, but doing so recharges your batteries and allows you to continue being the devoted caretaker that you are. An hour, a day or even a week off may seem minuscule to some or too much for others, but it is a way to put stock back into your own loved one.

The ups and downs of caregiving are incredibly difficult. On one hand, you are taking care of someone you share a deep connection with, and on the other hand this person may now be unrecognizable. There are good days and bad ones. If you find yourself on this roller coaster it’s very important to be honest and get help before you hit rock bottom, explains Dr. Fraylay.

This is something Mrs. Finkle can relate to. She says that feels alone as she has “lost” her soulmate and best friend of sixty years. She is planning to go to Miami for two weeks and join a Pesach senior program, a trip organized by her adult children who are always encouraging her to take a much-needed break. “At first I was ashamed,” says Mrs. Finkle. “I should go to Florida and sit on the beach while my husband is in a nursing home? But I also know I cannot continue life like this and I need a mental and physical escape so I can go on doing what needs to be done.”

A small trip is a good preventative measure for caregiver burnout, but may not be feasible for some, so here are some other ideas.

Be realistic. Understand that you’re only one person and that you can only accomplish so much in a day. Don’t feel like a failure if you didn’t get a chance to take your caretaker outside for a walk, of if you were too tired to cook their favorite meal. It’s normal to have feelings of resentment sometimes, and this doesn’t make you a bad person. This is a one-sided relationship and it can be daunting especially when progress is not possible or if no appreciation is expressed. Dr. Fraylay explains that pressure can change your point of view. Things that were once easy to deal with now seem like a burden.

Plan financially. Illness doesn’t just affect the mind and body, but also the wallet. Many illnesses last much longer than expected and this can become costly as insurance may not allow full coverage. “See someone who knows the ins and outs of financial planning so you can take a cold hard look at your finances. This will take pressure off you in the long run,” says Dr. Fraylay.

Have Fun. When you are starting to feel stressed, take time out for yourself. These caregiving breaks can take any number of forms, but must allow the caregiver some personal time away. “Personally, I walked, wrote, and read the newspaper in coffee shops,” says Lauber.

Pray. “If you have faith, hang onto G-d,” says Terri, who became religious after a lifetime of not believing. “I have to say I have proof of G-d’s existence and help as I prayed my way through the years and so many prayers were answered, and I got the help I needed to keep going.”

Ask for Help. You cannot do this alone. Reach out to relatives, friends or organizations for assistance. Don’t assume that because they haven’t offered to help they don’t want to. It’s possible that they didn’t want to impose. Be honest to others about your situation and let them know you need their help. ”If people offer to help (which rarely happens in a situation of long-term illness), TAKE IT!” advises Terri Corcoran. If you don’t have anyone nearby you can turn to for help, confide in others and express your concerns; this will alleviate some of the stress you are harboring. Dr. Farlay recommends therapy. “I am a mental health counselor and even I seek help when things get out of control. Sometimes it helps just to have someone,” she advises.

Patients need a variety of things to secure their health, including medicine, checkups, exercises, scans, and therapy – and caregivers are no different. In order to maintain overall wellness, caregivers must allow themselves respite as this is an integral part of continuing the great work they do.


SIGNS OF CAREGIVER BURNOUT

 Lack of energy or finding anything exciting in life (social withdrawal)

 Constant fatigue or sleep issues (too much or too little)

 Weight loss or gain

 Getting sick often

 Headaches and or upset stomach,

 Irritable, moody and snapping at loved ones

 Feelings of resentment towards caretaker

 Decline in personal appearance, hygiene or care

 Difficulty concentrating