Family caregiving is more of an art than a science. Most people who take on the challenge of family caregiving do the best that they can under their unique circumstances, yet, they often receive criticism, sadly even from other caregivers. How can family caregivers who are already doing so much for their loved one(s) weather criticism from outsiders about how they provide care?
Issues between brothers and sisters often seem to come to a head when a parent begins requiring care. While siblings who have always had a healthy relationship generally find ways to work through their disagreements, many who never truly got along can find themselves frustrated, hurt and even completely estranged from one another in the end. In either scenario, objective, professional advice can be helpful for those families who are experiencing conflict at a time when everyone should be cooperating.
The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards
Dear Carol: My mother has Parkinson’s disease but still lived alone in the family home until she took a bad fall. Now, she needs around the clock care so we’ve moved her to a nearby nursing home. The care is good, so that part is fine, but her home must be sold which means that I, the only adult child nearby, must clean it out. This is a large home with four bedrooms, all of which have somehow filled up with “stuff.” The basement is packed. The decisions about where to start are overwhelming. Sometimes I just want to dump everything, but this is the home where my parents lived and where my brother and I grew up and there are things of value buried beneath the junk. I know that I need to hire help but I also know that I must make many of the decisions myself. Where do I start? – DG
An amazing book of stories that will touch your heart and encourage you, especially if you are a caregiver. Carol Bradley Bursack also has an excellent website devoted to the elderly and their caregivers. - Carol Heilman
Over the past several decades, I’ve been a care provider for many people. Most of my care receivers were elderly, including one neighbor, an aunt, an uncle, two in-laws and two parents. Each one needed varying amounts of care across different settings. Through it all, though, I’ve had a hard time accepting the label of caregiver. My experiences growing up in a multi-generational household may be one reason why I struggled with this concept.
Every person who becomes a caregiver will have unique personality traits, yet we nearly always share certain feelings and experiences as we travel a road similar to one another. That’s one reason that caregivers often turn to other caregivers for support. It’s a version of the adage that we need to walk in another’s shoes in order to truly understand what they feel.
One of those shared experiences is a certain amount of stress. Some personalities cope with the ever-changing, nearly always challenging, business of caring for another adult with health issues better than others. A positive attitude and a flexible approach can go a long way as we feel our way along the sometimes uncertain path a caregiver must follow. But even the most laid back person is going to feel stressed by the responsibilities of caregiving from time to time. That’s normal and to be expected. With some care, people generally bounce back. What caregivers need to watch for is burnout.
Originally asked by HealthCentral Community Member EastCoastAir
I am the eldest of four children. I am our nearly 85-year-old mother’s healthcare surrogate and have for decades, paid all her living expenses. In the last few years, her memory has steadily declined. Her personality has changed and she has been physically assaultive and verbally abusive to people in public as well as to all of us. She is intelligent and able to “present well” in front of her physician when she sees him for ten minutes. However, at her senior center, she has had to be subdued by the police, taken in an ambulance for “heart” problems that are due to hysterical screaming and behavior.
Nearly everyone involved in caring for aging loved ones is experiencing grief. Often, however, we're not aware of this grief. We have a parent who used to be strong and capable begin to ask for a little assistance. No big deal, right? We're happy to help. But underneath, often unnoticed, there's a knot in our hearts. We're grieving the loss – the loss of function that made our parent need to ask for help. Weren't they the ones who helped us? Weren't they the ones in charge? Generally, these changes are subtle, the grief sneaky.
Can caregivers get so drawn into the world of the care receiver that their mental health is at risk? I received a private email from a reader that made me think more deeply about this possibility. The reader said she’d been caring for her mother in her mother’s home for three years. The mother has middle stage Alzheimer’s and can be quite "creative" about reality. The caregiver told me that she does what experts often suggest and tries to join her mother in her mother’s dementia world. She loves her mother and doesn’t mind that she spends most of her time caring for her, but is afraid that she is becoming so drawn into her caregiving that she may be losing touch with the non-caregiving world.
... So, with some guilt, we start looking at other options. For some people, this means having your parents move in with you. If there is enough room that everyone has privacy and the personalities blend, this can work. However, before making such a move, make sure your head is as engaged as your heart. While you are considering this option, you also may want to read "Living With Elderly Parents: Do You Regret the Decision?"
When a person succumbs to any form of dementia, it is hard on family and friends. It is difficult to see the diminished capacity of a loved one and the unbearable frustration it brings. However, one of the worst things we have to cope with is the fact that this person has a flawed memory, and this flawed memory can cause them to tell others terrible things about us, simply because their brain isn't working correctly. No matter how far-fetched their stories and accusations may be, to them, what they are saying is true.