Family caregiving: a personal story

Connie (not her real name) has been caring for her mother for almost a year.  More and more her mother needed assistance with getting around.  Connie and her family investigated alternatives and found that back surgery was highly recommended as a solution for their mother so that she could have her independence back.  Connie’s mom was a perfect candidate for this surgery.  She would be in the hospital for 4-5 days.

However, the surgery did not deliver the independence that they had planned.  A couple of curve balls later and Connie is providing 24X7 care for her mother.  She and 5 other family members have experienced different levels of care giving over the past months.  They supported their mother (and grandmother) in the hospital by rotating visits to time with meals so that they could ensure their mother ate regularly.  They also needed to advocate for their mom because she was very hard of hearing and very disoriented from multiple surgeries and infections.  Her hearing condition affected not only her day-to-day interaction with staff.  After surgery because she was unable to hear and would be disoriented from the procedure, the family was always concerned that their mom would give incorrect signals to the recovery room staff.

After 3 surgeries (2 to remove infections) and 32 days in hospital, Connie’s mom was released.  Rather then send her to a rehab facility, the family chose to bring her home.  They wanted to try to accelerate the healing process by getting her into her own environment.  Connie’s mom came home to a hospital bed with a catheter and a pick line available for the family to administer medications.  Mentally, she had experienced accelerated dementia and had no recollection of what she had been through.  At home, the care was full-on; they monitored her medications, performed procedures, fed her, and managed catheter and commode use. 

Recently Connie’s mom has become more mobile, even though she still lacks the independence that the surgery promised.  Now the family needs to watch so that Mom does not fall and they need to help her manage the extreme back pain that is a result of the surgery. Throughout the entire process, Connie has not only had to manage her stress, but also her mother's stress due to not being able to understand what has happened and why she is in so much pain.

Connie agreed to be interviewed for this article because her heart goes out to anyone who is in a caregiver role.  She thinks about her responsibility constantly and is obsessed with the safety and health of her mother.

Lessons learned
Organizing assistance--Connie is the main family caregiver, but she also has the help of 5 family members.  All 5 caregivers work so no one is available for their mother/grandmother 24X7.  They stay organized with a schedule that a single person is in charge of putting together.  This helps ensure that coverage is complete and caregivers’ time is maximized without excessive overlap between family members.  Another person is in charge of medications in order to eliminate errors.  Medication management has been one of their lessons learned.  They have a list of all of Connie’s mom’s medications available and ready at all times.  They have received mixed recommendations from doctors.  Connie indicates that while they want to rely on the doctors, it has been the pharmacists who have helped them identify prescriptions where Connie’s mom is allergic and thus prevented setbacks. 

Uncovering information--While her mom’s doctors were all certified to go to hospital A, the back surgeon only practices in hospital B.  So Connie and her family did not have the comfort factor of knowing that her mom’s personal physician, who had treated her for years, was monitoring her health and medicines.  Instead Connie’s family took the strategy of getting to know all of the nurses and doctors at hospital B.  They relied on them for news.  Even after her mom came home, she was under the care of hospital B’s visiting nursing staff and doctors.  It was months before they could return to her family physician’s care.  Further, once home, Connie felt that the nursing evaluation should have been an educational process and it was not.  The family made mistakes in their care because of lack of knowledge for caring for a bedridden patient.  For example, tucking the sheet of the hospital bed under the mattress (as one would with their own bed) led to bed sores on her mom’s heels.  On top of that her mom had swollen feet and ankles.  Connie’s family made her mom put her feet up on a pillow to reduce the swelling and get the circulation moving.  This was painful for a back patient.  It was only later that they found out from the visiting nurse how bedsores feel (much like your heels are on fire) and how to treat them, and from the primary care doctor after she was released from the visiting nurses why her feet were swollen (5 vials of intravenous liquid each day).  Connie was frustrated by the process of working through the symptoms to find the source of the issue, in that it meant more pain for her mother, when there could have been some feedback and education from the staff to assist them up front.  She realized that staff do not want to give out misinformation and that they may feel awkward about limiting the help they can provide for legal reasons.  Her recommendation would be to ask up front about symptoms you are concerned with and about your plan of action.  Do not make assumptions and you will get the answers that you need.  Finally, Connie advocates talking to doctors, nurses, and pharmacists about issues the patient is having.  Through these conversations, she discovered she could get a prescription for a wheel chair.

Advocating for the patient--Connie feels that regardless of the age of the family member, who is in a health facility, the family needs to advocate for the patient.  Family should ensure the patient is eating and educate the facility staff on what the patient needs if staff are unable to communicate directly with the patient.  Connie lobbies that families should make a point to understand all procedures and medications and the purpose of each.  Further, it is a good idea to bring in supplements and food that the patient enjoys (as long as the staff approves it) to allow the patient to build up both strength and morale.  Connie thinks family should be vocal with their concerns and also express their appreciation to the staff for their efforts after the patient's stay is over.

Hiring caregivers--While it was stressful for Connie when her mother was in the hospital, it was also comforting to know that she was being looked after.  The visiting nurses they hired post-release were very costly.  While the doctor provided a prescription for a caregiver, Connie found that Medicare and her mother’s secondary insurance would not cover the cost, so it was up to the family to find an adult aid for their mother.  They did this by word of mouth recommendations and intend to pass on references for the aid when they no longer need her.  Connie recommends that the family make public the patient’s schedule so that the aid can be part of the caregiving team.  Should the family want the caregiver to be tough with the patient, outline your instructions clearly.  Connie’s mother needed to get up and walk so these instructions were outlined for the caregiver.  Hot buttons, or triggers, were noted for calling family members and calling 911.  Connie encourages you to be honest with your aid.  She told her aid that she was reluctant to leave her mother with someone outside the family, but that she also did not want to lose her job, which helped the caregiver understand the level of detail and hands-on care that the family was expecting from her.

Juggling your own life--Connie indicates that setting expectations for yourself and your family is better than waiting for big surprises to surface.  If you are working, be honest with yourself about the amount of effort that you need to spend as a caregiver.  She recommends considering the option of family leave rather than attempting to juggle a full-time job and full-time care giving.  The former allows the worker more protection in the long run with his or her employer.  Connie feels that every employer will tell you to do what you have to do to aid your family, but what they really mean is for a very brief period of time, and then they expect you will be back to your work with full effort.  Planning ahead can help to reduce the stress that is likely to develop as conditions continue.

Experiencing frustration--When Connie’s mom first went home, the nursing service tried to send the same staff every week, which meant there were only 1-2 staff seeing her mother.  After the family caregivers were trained on giving injections, the nurses came only once per week.  Connie was really pleased that  the same staff consistently came to see her mother.  It was less chaotic than the changes in shift at the hospital and the stress for her mother was reduced both by knowing the caregivers and by being at home.  The negative of this experience is that the family asked questions about their mother’s future that the staff could not answer and this was frustrating for the family.  They knew that their mother was fine mentally and emotionally prior to the surgery, and wanted her back in that condition.  The caregivers did not know Connie’s mother and, therefore, could not offer advice and could only treat according to the hospital doctor’s orders.  What was lacking was emotional support and a recognition from medical staff that something was wrong with Connie’s mom.  Any family must be prepared to experience similar frustrations. 

Individual preferences--While Connie thoroughly supports the idea of rehabilitation stays for recovering patients, it just happened that her mother required very little rehabilitation services. Her feeling is that there is no place like home to get back on your feet.  If her mother had been better able to communicate her needs with rehab staff, then rehab might have been a more viable alternative for her family.  Connie’s idea was to make life as normal as possible for her mother knowing her limitations.  She also thinks it is necessary to focus on the positives for the patient and let them see what is going right.

Caregiving: Advocating for a child

Before we adopted our daughter, we had to attend a set of parenting classes.  The class covering special needs children focused on being an advocate for your child.  I thought, "Great!  I have a big mouth and I like to argue if I think I am right.  I finally found something in life that can benefit from these somewhat negative traits."  Once we knew our daughter's condition, we contacted other parents with hearing disabled children, toured two local schools for the deaf, and lined up doctor appointments with specialists that these sources had recommended.

The adoption was finalized and the process to register our daughter with early intervention was smooth.  She was accepted and put into a remarkable program called Sound Start at Lake Drive Program.  Over the next year we switched audiologists and ear nose & throat specialists to find personalitites in professionals that met our expectations and values.  Our daughter attended sessions at her school, and after she started talking more, had speech therapy at home.  She progressed well and advanced mentally and physically beyond her biological age.  There was little advocating needed.

Then came preparations for turning 3 years old.  In New Jersey there is a clear delineation between our early intervention services and preschool services.  Each child needs to be re-evaluated prior to turning 3 and meetings are held with the local school system to determine what, or if, any services will be provided.  We were given a procedure manual, which was also explained by our early intervention case worker.  We had heard stories from other parents about their experiences.  The common thread was that it was not a simple, stress-free experience, and, most likely, it would entail a lot of advocating.  At the same time, our daughter was starting the evaluations for transition, her doctor recommended a hearing device based on her recent reactions to sound.  These two events have led me to really understand what it means to advocate for a child.  We have had help from some remarkable people most of whom we have met during this process.  All were very willing to support our daughter's cause.  So here are our recommendations when advocating for your child:

• Network with other parents in a similar situation.  We have benefited from hearing other parents' stories, and have, hopefully, been able to share some value with parents following us in the process.  It is sad, but at the same time re-assuring, to realize that other families are facing similar situations.  For example, we learned that it is common for hearing test results to vary from visit to visit and it is common to change doctors if you feel uncomfortable with a practitioner and his or her recommendations. 
• Call specialists and ask if they can support you in any way.  Not only did our daughter's school help us, but the other school for the deaf in the area did as well.  Even though we had no connection with the Summit Speech School, the executive director assisted us by suggesting a new type of hearing evaluation and, after a review of our daughter's case, provided suggestions on the type of services that were needed.  Further, when we had issues obtaining my daughter's hearing device, I phoned clinics around the state asking them if they dealt with the device.  Every time, even if the staff could not help me directly, they gave me suggestions and phone numbers of further places to call.
• Do your research.  Our daughter's school pointed us to some scholarly research for children with hearing loss.  By adding our own research we were better able to articulate the long term effects of our daughter's condition and identify methods for aiding her.  Further, we now know the developmental areas where she is at risk, and can monitor those areas more closely.  
• Persistence pays off.  First, we were persistent with the local school system in separating a disabling condition from developmental delays.  While there may not be a need for some special needs children to have special services if they are not developmentally delayed, a hearing loss is a situation where it is necessary to have special services if a child is going to succeed in an integrated classroom.  Throughout the evaluation process, we learned more questions to ask and built up our case to a point where the school system agreed to classify our daughter for services.  Second, we were persistent regarding complications in obtaining the hearing device.  The rehab center we were sent to was unresponsive, could not schedule appointments less than a month in advance, and had an inappropriate number of audiologists (1 instead of 2, for a 3 year old patient) attend the appointment, which caused the process to be drawn out further.  I phoned the ear nose and throat specialist and asked if we could go somewhere else.  I was given the director's name for the program at the rehab center.  When the director was no better than the other staff, I phoned the doctor again and asked to go elsewhere.  He really listened.  He phoned me at home after-hours and listened to all of my concerns.  He then took over the case himself, opening an account with the manufacturer.  His audiologist also kept the process moving for us when the manufacturer had issues delivering the hearing device on time. 
• People care (even if their job requires that they say no to you).  Every person throughout the process supplied us leads and assistance.  It was remarkable.  First, with regard to funding, the device is pretty costly, even more so than a normal hearing aid.  The school system who was declining services gave us names to call; the early intervention people put together a request to the state for us; the doctor wrote to our insurance company;  the manufacturer of the device offered advice.  We talked to people in state government roles, and family members gave us ideas. In the end, we did not get financial aid, but I am truly overwhelmed by the number of people who offered advice and wrote letters on our behalf.  Second, people helped us lobby for services.  The rehab center that was having issues getting us the hearing device, offered to write a letter to the school system.  Our daughter's school and the other school for the deaf wrote recommendations for us to submit.   We are awed by the willingness to help others that was shown to us and hope that we can do the same for other families when they need it. 

Overall, we have had it easy in the care-giving arena.  We have had about 7 months of chaos in a little over 2 year period.  Our daughter is healthy and advanced in her development.  But the adoption agency was right, advocating is the major responsibility in a case like ours.  We hope that our experience will aid others when they face a situation with their child's health or development.


To better understand the issues of educating a child with special needs, start with browsing the National Dissemination Center for Children with Disabilities.  Their website offers information on disabilities, education of special needs child, state specific programs and offices, and much more.