"[My dad] is 77 and maintains responsibility for taking care of my mom, who is 82. She has rheumatoid and degenerative arthritis. She recently had her hip replaced, which will hopefully alleviate some of her pain, improve her mobility, and enable my dad to have some personal rest and relaxation time. I do as much as I can, but have been diagnosed with terminal systemic lupus. I always promised myself I would make sure to take care of my parents; that they would never be faced with the prospect of having to enter a nursing home..."
"I am the primary caregiver for my mother who is an 81-year old African American with Parkinson’s disease. For several years, my mother was subject to numerous diagnostic tests, evaluations, and prescriptions — some redundant and/or unnecessary — in an attempt to identify the cause(s) of her symptoms. In addition to the lack of coordination between the disciplines, my ‘ah-ha’ moment was when I became aware that, besides the lack of coordinated care, few of the health providers with whom she regularly interfaced had the cultural competence to maximize their interactions with my mother and expedite the diagnosis process."
"[My mother] had been seeing several doctors in Florida and was receiving a number of drugs. Her new doctors in Pennsylvania have discovered she didn’t need many of them. Her medications are monitored, but because she is no longer capable of understanding what she takes or why she takes it, my husband and I have been making sure she gets her medications twice a day...She has a cell phone around her neck and I call her twice a day. I have a "key" where each medicine bottle is and tell her over the phone where to go to get the bottle. I ask her to read what it says on the bottle to make sure she is taking the right meds. This is the only way we can get her to take her meds without being there... I spend at least 30 minutes by phone helping her prepare coffee using the microwave, heating meals, pouring cereal and juice, etc. We receive all of her mail and pay her bills. This has not been a treat for us, but it’s working. I’m not looking to abandon her, but we could really use a break."
"Continuity of care. If patients could receive the care that they need in a systematic way that made sense to all and could be followed by all, so many mistakes could be avoided. No one would have prescriptions for the same thing at five different pharmacies because each pharmacy could look up and check."
"I have been caring for my father since 2000 and he is 90 years old. I started taking care of him...after my mom had passed away. I also took care of her until her death from cancer. I need a break from caring for my dad. I am burned out and need a vacation. I get no help. I gave up my income 11 years ago to care for him. I need medical equipment for him but some require a doctor’s prescription...on top of everything we are living on a fixed income, barely getting by with savings...I need a break."
"I work with family caregivers who have loved ones with dementia who are in the hospital undergoing routine medical care. Since there are no specific services or supervision for the patient with dementia, these family members end up staying at the hospital for sometimes days or weeks to make sure their loved one stays calm. There needs to be attention given to the hospital routines for patients with dementia. There also needs to be more support for their family caregivers during these stress-filled times."
"I’m so frustrated with the doctors at the skilled care facility my mom is in. My mom has Parkinson’s and, recovering from a broken neck, was in rehabilitation. The doctors lack communication with each other and with our family. The primary care physician for my mom stopped therapy while my mom was in a neck brace without even consulting or looking at the notes from the orthopedic doctor. The primary care physician also was signing off on medication saying my mom was receiving it when she had not for 3 months! The doctors need to communicate with each other!"
"Before my husband went to the nursing home I collected huge files on all his medical care and insurance reimbursement. Since he has Early Onset Alzheimer's Disease I've been responsible for all his care with no support here on the East Coast. All my family moved out West years ago. My mother and I compare notes; my Dad in CA has dementia as well. One of my husband's music students saw the medical file and the light bulb went off in him that every paper represented another doctor's visit... There isn't enough being done to help family caregivers organize their lives and the medical needs of their loved ones."
"…I was on call 24 hours a day, doing treatments when aides didn't show up…driving to and from doctors' appointments, worrying when or if the handicapped van would arrive on time or fitting our schedule into theirs… It also meant monitoring medications and researching new ones."
"Additionally, doctors did not suggest that we change our daily lives in any way to help his back. These we had to learn through trial and error on our own…If doctors were taught about these types of things that could help, or thought outside the box of simply medicine, perhaps we wouldn't have had to go through years of trial and error."
"Once a diagnosis was made, all that was offered was a prescription for Aricept (no samples or product literature that would have at least referred me to social supports). No direction to their dementia support program...I learned of a family caregiver resource center only from a newspaper article that featured a friend whose husband was diagnosed with a brain tumor."
"Currently I am assisting my wife with her health care for a persistent neck and back condition. She has several practitioners, appointments and medicines. The medical coverage has been good, but coordination of the services is often difficult. Since she is in pain, she needs help to get to appointments to keep all the information straight."
"I work with MANY elders who cannot get their doctors to have clear conversations with them, who have multiple doctors who are not talking to each other, and who need much more care than they have access to…The impact on [their] lives is frustration, along with fear and physical, mental and emotional suffering."
"I'm worried about a day where I could conceivably be taking care of my grandma, my dad, and my brother, not to mention any children I might have in the future."
"During my years in medical offices and hospitals, I have seen how coordination of care is minimal. When I was working before moving my mom in with me, one thing I made sure of for patients was that their discharge planner was held accountable and if I found a big hole in their "plan", I let them know about it. You can't assume that people always have support when they leave the office or hospital."
"My 79 year old mother had knee replacement surgery last year and was given the wrong information/instructions about taking Warfarin after her surgery. It turned her leg black and could have re-hospitalized or injured her. Her surgeon didn't coordinate with her after-care doctor about how to use the Warfarin. If there had been any kind of better coordination between doctors, this wouldn't have happened."
"My daily life is spent trying to cope with the huge responsibility of caring for myself and my mom, and it's a really hard fight to not just give in to the depression, anger, frustration & discouragement."
"I was on the phone most of the time trying to get the attention of anyone who knew how to/cared enough to coordinate care for my mother."