We often get asked for book recommendations about subjects related to caregiving, eldercare, and aging. Here are a few that we have enjoyed and would like to share with you:

Solie, David. How to Say it to Seniors. Sept. 2004. 224p. Prentice Hall Press, $10.85 (0735203806).

This book examines communication with seniors from a developmental perspective. By framing the developmental tasks of later life against the differing “missions and agendas” of the family members and professionals who are often attempting the communication, the book offers a better understanding of the underlying issues. As the author states, “the goal of (the book) is to help readers improve their relationships with this elder generation that deserves our best efforts in facilitating their compelling end-of-life tasks. By doing so, we have the privilege of retrieving a world that might be lost to us forever and enriching our lives in ways we can’t imagine.”

Throughout the book, the author uses specific examples and stories to illustrate the theory and ideas he presents. He delves in to the need for control at a time when one if often losing control through physical and other losses and the task of creating a legacy. Using this background, he then touches on some of the communication patterns and “typical” dilemmas many older adults face (housing/living arrangements, managing health, becoming widowed) and offers skills to enhance communication in these situations. The concrete skills and the “how to say it” and “how not to say it” sections provide practical advice for anyone.

O’Dell, Carol D. Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. 2007. 208p. Kunati, $19.95 (1-60164-003-X).

Mothering Mother is not simply a how-to book on caregiving. Mothering Mother touches on what our relationships do to us, how they impact our souls, our beliefs—beliefs about ourselves, about life and the quality of life, about faith and hope and finally, about death.

Mothering Mother is an authentic and “in-the-room” view of a daughter’s struggle to care for an aging parent. It will touch you and never leave you. You will be astonished at Carol’s brutal honesty. Her ability to narrate the feelings of the moment—love, grief, humor and even those moments of bitter resentment—will both reassure and arm you for the day when you may face a similar choice. Find out why, so many say, “I loved this book!”

O’Dell, a member of the “sandwich generation”—made up of boomers taking care of both their own children and their elderly parents—portrays the experience of looking after a mother suffering from Alzheimer’s and Parkinson’s with brutal honesty and refreshing grace. She peppers the memoir with scenes from her past, including meeting her adoptive parents (“The first time I saw Mama, I was four years old”) and the death of her father. With three children of her own, O’Dell is torn in multiple directions, trying to be mother, daughter, nurse, cook, caregiver, maid, and more to five needy people. Mama’s neediness is unrelenting, and O’Dell is at once bitter and sorry that her mother cannot be who she was. When the inevitable end comes, O’Dell wonders why she longed for the free time she now finds lonely and empty. A beautiful rendering of a difficult but all-too-common situation, told with plenty of humor, a touch of martyrdom, and much love. Booklist: “Beautiful, told with humor…and much love.”

Pipher, Mary. Another Country: Navigating the Emotional Terrain of Our Elders. 1999. 328p. Riverhead Books, $24.95. (1-57322-129-5)

“If age is another country, then we must all learn to speak its language”. This book is a “field guide to this foreign landscape”. Dr. Pipher writes from her experiences as a therapist and shows us through her stories, the challenges and triumphs of bridging the communication gap and dealing with the familial impacts of aging.

Delehanty, Hugh & Ginzler, Elinor. Caring for Your Parents: The Complete AARP Guide. 2005. 221 p. AARP, $19.95. (1-4027-1739-3)

A roadmap/resource guide to caring for aging parents, starting with how to broach the subject and covering topics such as scams and protecting your parents, navigating Medicare, physical changes, caregiving help and living arrangements. A good starting point to review key issues and understand terminology and resources that may be out there to help.

We had the pleasure to have Carol speak to our staff and share her experiences with us. She echoed so much of what we hear from the families we work with—the frustrations, joys and the journey of caregiving. At Aging Wisely we are so privileged to be part of our clients/families’ journeys and try to walk hand in hand with them through the tough times. We know how isolating it can be and we hear time and time again about the difficulty of getting good, reliable information when it is most critical. We work hard every day to guide caregivers through what can truly be a maze and hopefully give them the gift of time to focus on their loved one—being that daughter or son, rather than fighting battles with insurance companies, searching for resources, and the endless tasks that can take over being in the here and now. Carol’s words remind us of the importance of this work, and we thank her for sharing her experience both through her book and her presentation.

Q: Why did you decide to write your caregiving story?

A: I believe in a cathartic value of writing. It’s always been my “mode of transportation.” I journal to work out things in my mind, as a form of prayer, as a way to understand myself and others, so it was rather natural for me to turn to writing during a very stressful time in my life–in this case, caregiving. By observing what’s happening in my life (by writing it down), I’m able to see the bigger picture, keep it all in perspective, and feel that I’m capturing some of the moment’s richness and texture on the page.

I think journaling gave me a place to put some of my emotions as a caregiver. I could vent on the page, cry and question and even gather our family memories and feel that I was preserving them. It gave me something to do with myself–something other than the physical work or the mental anguish of having so little control over disease, the dying process and all the fears and frustrations that come with it.

Q: What do you think are some of the top things we (society) are missing that could help caregivers?

A: I’ll focus on one area for today because I believe this message is so important. One of the major glitches is COHESIVE AND TIMELY INFORMATION. There are lots of resources out there for many caregivers in most communities–and yet, they don’t know about it. Caregiving is isolating in many regards–physically, emotionally, mentally. Caregivers shouldn’t have to be the ones to go on the scavenger hunt to try and piece this all together. Every doctor, hospital, home health care, pharmacy, church/synagogue, and other “stations” of the community should all have the same information that’s updated and available to every caregiver, so that when a caregiver steps into their community (of course, it should be readily available on the Internet as well) they find the help they need.

Q: What are some of the things you could have used as a caregiver?

A: As I mentioned above, cohesive and timely information–and then follow-up care. I did receive help with my mother, but it was sporadic and blotchy. She qualified for home health care (under her insurance) for 6-8 weeks after a hospital stay, which was great, but the time and effort it took to set it all up, get on a routine, and feel like we were making some progress was short lived. It was over. I had no choice to continue this level of help or care–even if I offered to pay for it, which I think should be an option. It’s so hard to find care providers who “click” with your family, and when you do, you’d love to keep them.
Also, when I was handed information, it was piecemeal–here and there–with little or no explanation.
You have to realize that as a sandwich generation-er, I was an active mom and wife in my thirties and then early forties. I was busy driving my children to ballet practice, piano and horseback riding lessons. Then, as a caregiver, I was thrust into the medical world with terms such as DPOA, DNR and Living Wills. I had no idea how to connect the dots. I didn’t have the time or energy to catch up on this steep learning curve of medicines, insurance, doctors, home health care, care facility options, medicare, etc. Most caregivers need a few sessions or a workshop/and cohesive materials to be explained to them, so they know what comes first, what choices they have, and to begin to write down a short term and long term plan not only for their loved one, but for themselves–a strategy on how to manage their caregiving years/role. See? Even talking about it sounds complicated and exhausting!

Q: How did the years your Mom was living with you affect you and your family? Positive and negative?

A: I think it defined and redefined how much we were (and are) a true family. I think overall, it was good for our children to feel needed, to have to sacrifice a little bit of time, effort and to share mom a bit. At times, we all perhaps sacrificed a bit too much. Caregiving and family life cannot be controlled 100%. People can’t. If you think it’s not going to get messy, you’re mistaken. If you think you better not try it–get involved because things can get chaotic, scary, painful, then you better not parent or caregiver, because let me tell you, parenting takes a toll on you as well, but you do it because we need each other. We need family life–to be born or brought into a loving environment to live, learn and work out life with people who have committed themselves to us–and us to them. That’s family. Yes, caregiving is yet another aspect of family life. It shouldn’t surprise us that as the old saying goes, “what goes ’round, comes ’round.”

There are times when parenting has been heartbreaking, scary, lonely, overwhelming, and yet, I’m honored and grateful to be a mother. Caregiving is the same way. Even if your loved one’s care grows to be too much for you to physically or emotionally handle by yourself or in your own home, and your loved one needs more care and needs to live in a care community, you still need to be an active part of their life–an advocate to make sure they’re receiving not only proper care, but that they still feel your love and your connection to them.

Even with what I know now. Even as hard as caregiving was at times. I’m glad I did it. It taught me so much about myself, my family, my legacy, my womanhood. I know the price. I know the commitment, and I still say wholeheartedly, I’m grateful for this experience.

9/25 11:30-1

Estate Planning & Eldercare Professional Women’s luncheon

4th Tuesday of each month

9/19, 3rd Wed. of month

9 AM Hospice of the FL Suncoast

http://pinellasfallprevention.com/

Most individuals hope that they will be able to stay in their own homes as they age, but it is important for everyone involved to understand the care options, and when it may become necessary to consider an alternate living arrangement. There are an increasing number of options and resources to assist someone in maintaining independence in their own home. Most importantly, as chronic illness impacts your loved one’s life, it is important to get a good assessment of the options and the home environment. It is important to understand the costs of care at home and to review how the financial resources and public programs may impact one’s ability to remain at home.

When families are beginning to think their loved one may need to consider a move to a facility, they often don’t know where to begin. The aging resources have changed rapidly over the past decade, and there are more options than ever. The first level of retirement living is independent living, which occurs in many different types of settings. This may provide individuals the opportunity to downsize, remove the responsibility of caring for a home, and offer some amenities. Some places offer meals, activities or outings, and transportation. These are not supervised settings however, and not intended for someone needing assistance.

In the state of Florida, an Assisted Living Facility is defined as “residential care facilities that provide housing, meals, personal care and supportive services to older persons and disabled adults who are unable to live independently.” ALFs are intended to be a less costly alternative to more restrictive, institutional settings (nursing homes) for individuals who do not require 24-hour nursing supervision. Increasingly, ALFs are providing higher levels of care and allowing residents to age in place with more needs. In Florida, there is a basic assisted living license and 3 special licenses, LNS (Limited Nursing Services), LMH (Limited Mental Health) and ECC (Extended Congregate Care) under which facilities can provide additional specialty services. There are also special exceptions, such as a client under Hospice services can remain in an ALF while bed bound. However, each facility also makes its own determination as to what it chooses to handle and the level of care and services it will provide. For example, while an ALF may be permitted to handle an incontinent resident and provide a B & B (Bowel and Bladder, oversight and assistance) program, the facility may chose not to provide this type of service, thus meaning residents would need an alternative facility when they require this level of care.

Many people are surprised to learn that Assisted Living Facilities are not required to have an R.N. in the building. Small ALFs (less than 17 residents) are not required to have staff awake at all hours either. Many ALFs go beyond the minimal requirements, but due to this there is great variation in the level of service and staffing provided by each facility. Aging Wisely reviews all facilities when recommending placement and can provide you with this detailed information. We also visit facilities on a regular basis and keep updated on which places offer which types and levels of service.

In Florida, we also have Adult Family Care Homes, which “provide a full-time, family-type living arrangement in a private home for up to five (5) aged or disabled people, who are not related to the owner. To qualify for an AFCH license, the AFCH provider must reside in the same house as the residents.” This is an alternate arrangement for some care and support, but may be limited in the scope of what services are provided and generally does not provide the types of structured activities that most ALFs do.

A nursing facility provides 24 hour skilled nursing services and can handle more complex needs. Most nursing facilities are also the place where individuals receive therapy services, and may come for inpatient rehabilitation after a hospitalization. Therefore, most local facilities house a mixture of long term residents and short term rehabilitation patients.

It is very valuable to get an assessment when looking at these options, to ensure you have a good handle on the “level of care” needed and which places can best provide for your loved one’s needs. An independent care management assessment looks carefully at all aspects of the situation, from client’s medical needs to disease outcomes to family preference, lifestyle choices, location and finances. It offers an unbiased opinion and outlook on facilities and what is best for the client. Care managers also help counsel families through what to expect and how best to make the transition.

We have provided a sample story below that provides important lessons in this process. Also, keep an eye out for future articles about the costs and payment options for various care facilities.

Story: A client’s family member contacted Aging Wisely with concerns as their father was having some trouble at home. His wife was attempting to care for him but becoming overwhelmed. She had a home health agency helping most days, but he had started getting up at night and she was concerned for her safety, and her health and need for rest. She decided to look at assisted living facilities but did not choose to get any professional help at the time. She toured several places and asked friends and her doctor for recommendations. She found a place that she liked best and arranged for admission. She brought the client to be assessed and answered questions about his needs and behavior. Note: It is often tempting as a family member to minimize problems and these brief assessments done in this manner often lead to an inaccurate picture of the situation. Her husband was placed in the Assisted Living. Within two weeks, he had two falls and was found trying to leave the facility. He was hospitalized for some underlying medical conditions and now the facility refuses to take him back as they acknowledge they cannot meet his needs. Now the family is faced with another possible move and beginning the process again—and they are now rushed as he will have limited time in the hospital.