Elder care overview: where to start, what to do
by Carol Bradley Bursack, Editor-in-Chief
Caregivers Need Support: Get Help along the Way
Every caregiver's journey is different, but we share many situations that help us understand one another. Some of us watch while our elders slowly lose ground and need more assistance as often happens when people have dementia. Some of us find ourselves caregivers overnight, as can happen if a loved one has had a debilitating stroke. Because my personal elder care journey spanned two decades and involved seven people, I've been through both types of experiences.
Many, if not most, caregivers struggle with isolation. If there was a dramatic event that threw you into caregiving, you may have had a lot of support right away, but then people must get back to their own lives and often the caregiver feels abandoned.
If caregiving quietly tip-toed into your life via the needs of a loved one with a progressive illness, it's possible you may never have had much support. Either way, support is what we at ElderCarelink.com want to provide.
Support Comes in Many Forms
One of the first forms of support many caregivers need is a listening ear. Most of your friends, even though they may never have never walked a caregiver's path, will kindly try to understand the stresses of your days and they will try to be supportive. However, if they have not been in a similar situation as the one you face, they may not really understand. They could even, eventually, get tired of listening to your sad saga. That's where support from other caregivers, and from trained agencies, becomes vital.
The First Step Is Often To Seek Emotional Support
Please do share your caregiving woes - and joys once you recognize them - with your family and friends. It's important that they know how you feel if they are to support you the best they can. If you are a member of a faith community, contact people you trust there. Many faith communities are very responsive to caregiver's needs, and most are trying to be more accommodating than they have been in the past.
Next: Get Educated
Most of us go into caregiving blind. We just grab the job and go with our gut. However, going it alone can backfire. We can burnout from exhaustion and we can also find that, well-meaning as we've been, we could have given better care if we'd looked for help outside of our hearts.
Where Do We Find Specific Help on Diseases?
If the person you are caring for is suffering from a specific disease such as Alzheimer's disease, diabetes or stroke, you will likely find an organization devoted to the disease you are interested in. Most are non-profit sites and are packed with information.
For Alzheimer's disease, you can go to the Alzheimer's Association or the Alzheimer's Foundation of America. If your loved one has Parkinson's disease go to The Parkinson's Disease Foundation. For arthritis, there is the Arthritis Foundation. For diabetes go to The American Diabetes Association. You get the picture. Nearly every disease has an organization behind it.
You'll find here on ElderCarelink.com a growing body of helpful articles sharing information on personal journey's with specific diseases as well as overviews and quick facts. For Alzheimer's try Erasing the Stigma of Dementia, Rough Caregiver Nights and Sundowning, or The 7 Stages of Alzheimer's. For diabetes try Understanding Health Issues for Diabetic Seniors or Senior Care and Diabetes Management.
Reach Out to Professional Care Agencies
My first caregiving experience was with my neighbor Joe, an eighty-year-old, completely deaf widower who had only one son and that son lived more than a thousand miles away. My kids and I basically adopted Joe and for five years we were his family. During that time, I learned that I needed the services provided by in-home help, and eventually a nursing home, in order to give Joe the best care possible.
After Joe died, my aging aunt and uncle, my in-laws and my parents eventually came under my primary caregiver wing. Throughout the journey, I learned a lot on the fly. Since those days, caregiver support and health care options have exploded. While these options can't always salve the pain you, the caregiver, feel as you attend to your elders' needs, the support from fellow caregivers and from professionals at care agencies can help smooth the road. Always remember that you are still a caregiver even if you get outside help.
The first step for getting outside care is often in-home help. I got a few hours of help from an in-home agency after Joe fell and dislocated his shoulder. I eventually made use of in-home care for my uncle and my mother-in-law as well. This type of help made it possible for them to remain in their own homes longer.
Adult Day Care
Adult day care centers can give home caregivers a break and they offer peer interaction to elders. Often they are used as a first step toward assisted living or nursing home care. Assisted living centers vary in what they offer, but many elders like the programming and caregivers like the safety aspects. Adult day care can also work as a transition for the caregiver, especially a spousal caregiver. Check out Adult Day Care As a Transition for Spousal Caregivers.
Assisted Living Centers
Assisted living centers are, for some people, wonderful social groupings much like any retirement center. Often an elder will fight moving from the old homestead which is no longer practical or safe, but once in a good assisted living center with peers to interact with and meals just down the hall, they learn to love the place. This doesn't always happen, of course. But I've seen it often. Change is hard for everyone. For an elder who seems to lose something at every turn, moving from the well known home into a strange facility involves a major mental adjustment. Caregivers can't expect the move to be seamless. Still, this is a wonderful option for many folks. You will find many options for assisted living ranging from small groups of four or five residents cared for in private homes to large complexes attached to nursing homes. Many people would like one type of set-up and hate another. If you have some warning that assisted living may be needed, look around at the many options.
The "don't ever put me into a nursing home" promise still haunts many caregivers. Their parents remember the old style, military formatted nursing homes. Unfortunately, there are many of them still around, but they are slowly becoming a dying breed. Today's nursing homes are striving to become models of resident centered care. Most are now offering many meal choices and different times to eat. Instead of just the old standby entertainment, bingo, many nursing homes offer Wii bowling, movie nights, wheelchair dancing and creative art opportunities. Some have exercise rooms.
Ideally, you'll want to tour homes early and often so you get a feel for the centers in your area. My family was fortunate. We had an excellent facility within two blocks of my home where, over the course of 15 years, one to three of my loved ones at a time, resided. I could visit them all every day, during my "rounds" of apartments and condos where my other elders still lived. Was the nursing home perfect? No. But it was ahead of its time. I am still close with many of the staff, and I see them remodeling and retooling as they become more resident centered day by day.
For tips on how to choose a nursing home you can read 5 Things to Consider When Choosing a Nursing Home.
We will all die. The best medical care in the world can't change that. However, we can, with help from the growing community of hospice agencies, get for our terminal loved ones what is called palliative care. Palliative care simply means helping someone die with the least amount of pain and in the most peaceful manner possible. Accepting palliative care means that medical people, caregivers and care receivers have accepted the fact that a cure is no longer an option. Both of my parents died under hospice care, and I can't say enough kind words about the wonderful hospice agency that helped us. For an article on my hospice experience you can read Hospice Care as Seen by a Grateful Daughter.
Financial and Legal Help
The last thing most of us want to cope with while caring for our loved ones are the legal and financial issues, often tied together, that come with paying for medical care, care agency help and eventually funerals. But we must.
The sooner these issues are addressed the better. Those of us whose elders took care of the legal work early are the lucky ones. If we have a Power Of Attorney for finances and one for health care - often called a Health Directive with a Living Will - we are ahead of the game. We can make the tough decisions needed to best care for our loved ones.
If the legal work has not been done, we sometimes have to go to court to get guardianship, which is expensive and emotionally difficult, so if you are still in a position to encourage your loved one to see an estate attorney and get the papers drawn up, please do so. For some tips and advice, you can read Talking With Parents About End-of-Life Issues and Do You Really Need An Advanced Health Directive?
Well, my friends, you can see that caregiving is not simple. What starts as an act of loving care or just a necessary step in your life can turn into a confusing maze. We here at ElderCarelink.com will continually be adding articles to help guide you and blog posts to help you communicate and relate to real caregivers who are also experts in their respective care fields. Each of the bloggers has hands-on experience. They know first-hand what you have to deal with.
You can get emotional support by returning to the site again and again. The time of day won't matter because we are always home. You can choose agency help by filling out a survey found at the top of the home page. That survey will help you narrow down your current needs. After the survey, you can talk with a live person to further refine your needs and those of your elder.
Our fast growing archive of helpful articles will help guide you as you and your loved ones take this caregiving journey - likely the last journey you will ever share - together. We are here to help make it easier for you and for your loved one. Welcome to ElderCarelink.com. Let us know how to better serve you.