Laurie Newbound: While you have worked and continue to work with different kinds of patients, you seem to have been drawn specifically, at least for much of your career, to older people and their families. Why do you think that is?
Cathy Goldfarb: I have always had an affinity for the aging population because I was incredibly close to my grandmothers. I have learned that many of us in this career started out because of close relationships with grandparents. Both sets lived very close to where I grew up and I spent a lot of time with them. They were an integral part of my life. We grew up respecting them, respecting who they were, how they grew up, and loving them dearly. As with any relationship that is meaningful, time, interest and care is involved. When I decided to pursue my clinical licensure, I chose to work at Jewish Family Service in Senior Services. Once I earned my license, I worked with a friend/colleague who had a private geriatric care management practice. I was with him over eight years until I moved onto my private practice in professional geriatric care management and psychotherapy.
LN: From your end, how would working with a family begin and what role does the elder care manager initially play?
CG: For the most part, a long distance family member calls asking for assistance. I would notice that after a holiday there was usually an increase in the volume of calls…after families had gotten together. In the beginning it was often daughters or daughters-in-law who would make the first call, but this has changed over time. As years have passed, there has been an increasing numbers of sons who have called. Often the concerns included shifts in cognitive and/or physical functioning and other health issues, and the relative was struggling with a lack of knowledge and what to do or where to start. Entering this world is like a maze and oftentimes my assistance would guide the family member through it in a more informed way. A care manager can be a wonderful source of information and education about the aging process and can give the family advice as to health issues, symptoms to look out for etc., and can provide an enormous amount of information regarding resources and options. Care managers are connected into various parts of the system, i.e. health care professionals, programs, in home care agencies, placement services, housing and care facilities, elder law attorneys. These relationships are priceless in being able to access and facilitate necessary interventions.
Over the history of my practice, I saw more and more cases which involved local family members/caregivers who could not attend to their parents’ needs sufficiently because they had their own full lives, often sandwiched between caring for their kids and working outside the home. Sons had wives who were dealing with the same or similar issues with their parents at the same time. Often, cases involved a resistance by the elder relative to any kind of change. Examples included not wanting to stop driving, not wanting in home help, not wanting to see a doctor.
LN: From the family member of an elder relative’s point of view, when does it make sense to contact an elder care manager. Where do they find a good one, and what should they look for?
CG: There is always a good time to consult with a care manager. Often, people are in the process of planning for retirement and they want to get all the necessary areas covered, such as estate planning issues involving advance directives, power of attorney, information regarding price ranges of housing options (independent living, assisted living, skilled nursing), insurance considerations for supplement to medicare, long term care insurance. People often want referrals to elder law attorneys, insurance brokers, placement services, etc. In terms of looking for a care manger, a great place is www.aginglifecare.org which was formerly known as The National Association of Professional Geriatric Care Managers. The name was recently changed because there are so many different people referring to themselves as care mangers but who do different things and it has gotten confusing for people. We take great pride in our profession and in our credibility as professionals who must meet specific criteria in order to become a member of this association. Each member has an on-line profile which specifies what areas of specialty they practice. Anyone can find a care manager or aging life care professional in the geographic area of need. This isn’t the only association but it is the one in which I hold a membership and it is a wonderful resource.
LN: You were doing this kind of work for almost twenty-five years. What are the biggest changes you have noticed in the way we deal with elder adults in our society?
CG: Culture plays an enormous role in the ways in which we understand how we care for our elders. First and second generation immigrant families tend to have their elders in their homes with them and take care of them themselves. There are various ways of understanding this. Elders tend to be held with respect and honored. Generations live together and are not separated. However, there is often a resistance to seeking help outside the family when, if fact, assistance is greatly needed or could dramatically increase in the quality of care that families can provide.
As I said before, there is an increasing number of sons who call for assistance, when, in the past, it was mainly daughters or daughters-in-law who were the primary caregivers. The norm tends to be that both adult children are working outside the home so everyone is torn in a number of directions. People are living longer so we have a daughter who might be in her late 70’s caring for her mother who is in her 90’s. The daughter might be caring for her grandchildren while their young parents are working and/or have health or mental health issues with which they are dealing. More and more grandparents are the primary caregivers for their grandchildren, as well as caregivers for their own parents or elder relatives. Certainly now, the baby boomers are in the phase of dealing with their own elder issues, and private resources are booming because of this. However, the governmental resources are not booming, in kind. So I see that people very much need to be financially secure in order to utilize the enormous amount of resources and products that exist and that are being created.
When people are thinking of retiring and/or moving, I always inquire about the geriatric medical resources that are available in the community to which they are investigating. On a personal note, I often think that when the day comes when I am no longer able to work, I will probably move back to Texas, where I have family. However, the medical resources in my hometown are lacking so that is of concern. On the other hand, the cost of living is so much lower that it makes it more affordable to live. This is an example of the ideas to consider when planning for the future.
Speaking of finances, this seems to be another change I have noticed over the years. My parents, for example, were able to bring up four children and put them through college AND save money for the future. My father sold life insurance, he was a man who planned and thought ahead. He was also able to save so that we could care for him and, in turn, now we can care for our mother. He made sure of that. I can have all the best intentions but I can’t save like that! In Los Angeles, we see people who have a great deal of money. What can’t be denied is that it is easier to be creative in our caregiving, to examine many options….as long as we have money.
LN: What do you think are the most important things for adult children and their aging parents to take care of BEFORE parents start to decline?
CG: It is difficult to think about the time when we will need help and not be able to care for ourselves. But, we have to. Parents and their adult children should really try to sit down and discuss these matters:
- Who will be the attorney for finances and healthcare?
- Do we have our advance directives in place?
- Do we know what we want done and not done? When we are in a position when we can’t decide for ourselves, do our family members know best how to follow our wishes?
- Do we want that burden on our children because we haven’t been able to think about these things?
- In fact, do we want the burden of our care and well being to be placed on our children?
- Are our children knowledgeable about our bank accounts and general finances?
- Is someone a co-signer so that if I am incapacitated, someone I trust can access my funds to take care of me?
- How can I financially take the best care of myself and those closest to me?
These are all difficult but important issues to face. When our health declines and we become more limited in our abilities, won’t it feel better if all of these concerns have been addressed? When these changes take place, they can be very frightening and difficult to manage emotionally. It is best to put our energy into taking care of these things ahead of time so there is a plan that loved ones can follow.
LN: What are older people’s biggest worries and concerns going into this time of life? How can we, their children, help them accept their limitations while still supporting their wish to live an independent and meaningful life?
CG: Everyone is different. All elders are not the same…obviously. But sometimes we need reminding of that. One important point to remember is that we don’t necessarily change when we get older, unless we have had a stroke or something like a traumatic brain injury. What happens is that our characteristics become more exaggerated. So, if your mother was always anxious, she will become even more so. The more clearly we can see our parents as separate human beings, not just as our parents, the better it is for everyone. In addition, as an adult child, I strongly suggest doing your own personal work, separate from your parents, and work out your childhood and current issues with them so that you can come back to these relationships in a way that feels better to you. See them for who they really are, not for who you long them to be. That doesn’t help anyone.
We all have our issues, our longings, our needs and desires. Acknowledge and accept them in yourself and in your parents. Even though, as they age and become more frail and their behavior perhaps more childlike, they are not children. Do not think of them that way and do not speak to them as if they are children. They are your parents and you will always be their child. Try to feel empathy, try to put yourself in their place and imagine what would help you feel safe and well taken care of.
In terms of independence, the biggest resistance we commonly see is the one to stop driving (especially in Los Angeles). If their patient has a cognitive or medical limitation that makes them unsafe to drive, doctors in California are mandated to report this to the DMV. Sometimes adult children will need to go through the doctor to intervene.
As a care manager, my style was always process oriented. I did not come in like a bulldozer. Change is hard for most of us. I would focus on developing the relationship with the elder relative and with the children. Through trust, little changes (baby steps) could bring about meaningful and positive interventions. Remember that under all the resistance, the fighting, the anger, etc. is probably fear of loss of independence. Remind yourself that, if there are cognitive limitations due to medical reasons, alcohol or drug dependence, that following your parents’ wishes is like trusting someone with impaired judgment. This isn’t the best thing to do because they aren’t only endangering themselves but those around them, as well. Depression, isolation, and loneliness are not uncommon. All of these can be attended to and treated.
LN: What do you think is the best situation for older people with regards to their day to day care, social relationships and living situation? Is staying in their own home really the best way? And if they are going to consider moving, when does that make sense?
CG: There is not a one size fits all. I think you want to think of this as step by step. What are the financial resources? What are the community resources? Who is your parent? Is he a social person…a joiner who loves activities with others? Is she more solitary or not so social? What kinds of activities has she always liked? Again….step by step. Sometimes, bringing in assistance in the home hourly might be a good start. That might lead to more assistance with increased hours. Then, you might find that for whatever reasons…cost, on going supervision of the in-home help, problems with personalities, etc. might make things more complicated so you might consider supplementing with community programs. For example, if your parent has Alzheimer’s, 2-5 days a week could be supplemented with a day care program.
Structure is very important. Sitting in front of the TV all day is the worst thing, particularly if your relative has dementia. Physical exercise is extremely important and especially crucial in slowing the progression of dementia.
LN: In my own life, and with many of my friends I find that the hardest decision is whether an older parent should stay in the home or move to an assisted living care place, and it seems to rarely go smoothly. What are your thoughts on this?
CG: We have often thought that keeping our loved ones in their own home is the best possible plan. Not so. I have often seen a person come to life once we have moved them to an assisted living situation. The social stimulation can make an enormous difference. In addition, someone is always there and can access help if necessary.
There are various types of living situations available. Before it is necessary, try to familiarize yourself with options. Here in LA, I like to refer my clients to a placement service, one in which I trust. They will provide you with options of places, and we recommend that you visit them to understand what the options are and if you can see your relative living there. The people who operate these placement services have relationships with the administrators and owners and can advocate on your behalf. As a care manager, going to the home and assessing the situation, I then educate all involved to the options available and explain for clarification. Sometimes, doing the homework, like going to see the places first without your parent, might be the best plan. Strategic planning, in other words. All of this is dependent on the particular situation, who your parent is, what his or her needs are, what their financial situation looks like, what community resources are available…creative caregiving. As care managers, we are involved in this always. As adult children, we could always use the education, support and help. Things will always be changing, and if you’ve got a good team in place, this can make a difficult situation a bit easier.
LN: Why did you end the elder care management part of your practice? How did your own parents’ aging issues influence this decision?
CG: Care management is work that is highly labor and time intensive. Managing a person’s care involves attention on many different levels….attending to the needs and quality of life issues regarding the elder relative, securing and supervising in home help, being a liaison with the medical team and other resources and programs, crisis intervention, education for the families and the emotional piece that is attached to all of this that is involved. For many years, I felt passionate about this work. I absolutely loved it. I felt like I could really make a difference and help a person have a meaningful and satisfying last part of his or her life. Being an advocate for my client at a time when they could not do it for themselves meant everything to me. My whole heart was in this. But, I am tired. The loss involved in this line of work is enormous. And, speaking of loss, that is the one word that describes a great deal of this work. As a person ages, he or she experiences loss, loss of loved ones, loss of the same physical, cognitive and emotional capabilities she once had. Can you imagine what it must be like to have lost all of your friends….and your life partner? When my father lost one of his last close friends, I think he lost the strong will to live even though he had a very loving family around him. He had major surgeries which changed his life tremendously ten years before he died. Those ten years were some of the hardest he ever had. He lost his mother, his ability to work in the same way he was used to, he lost the feeling that he was necessary in the world.
My father died about 4 ½ years ago. I miss him more as time passes. My mother is still living but I have been losing her over the past few years. Fortunately she still knows us but her memory is fading. She used to be the historian of the family, and she no longer is. She is what used to be referred to as a brittle diabetic. I am so grateful she always took care of herself, because it would have been a lot worse if she hadn’t. But she has numerous health issues and is now challenged in feeding herself, and all of these health issues affect her cognitive functioning. This breaks my heart.
So, all of the experience I have had over these many years goes flying out the window when it comes to my mother. It is too close for me. It is taking a lot out of me to find a way to manage my concerns about my mother long distance, to manage my feelings of sadness and loss, to manage not being able to manage her care from this distance and to have to entrust that care to others. All of this has helped me develop even more sensitivity and understanding from the inside out for the families with whom I have worked these many years. I wish I had a clone of the Cathy of ten years ago to take care of my mother now, but I don’t. So this has taken a toll on my ability to give it my all as a care manager. I have a high standard, and I can’t seem to meet it. Therefore, I am taking a hiatus from this work and giving my all to my psychotherapy practice. This is where my passion lies. Currently, I still work with people around these issue, families, elders, etc. I help them with their emotional issues and concerns, and I love it. I am just not able to manage a person’s care at this point.
LN: Many of those that will read this are in the thick of caring for parents, children, spouses…it can seem at times like they are taking care of the world. How can they help themselves get through this time?
CG: On a practical note, as an adult child, moving in with your parent or having a parent move in with you is something you really have to put a lot of thought into. It isn’t always the best idea. How might that affect your own family, your spouse? Have you talked it through with everyone? As a clinician and a care manager, I found that I would always try to help the adult child with boundaries, to help him or her think about what she needs in this picture. As a primary caregiver, one must be aware of not burning out in caring for your loved one. If you are doing everything and not taking care of yourself in the meanwhile, I can’t tell you how often I have seen the caregiver get sick and die before their loved one. This is crucial! Support groups exist for adult children, for spouses, for family members, as well as for their loved one. Please do not forget your own care.
LN: Cathy, I can’t thank you enough for taking the time to give out so much information. The care and empathy and passion you bring to your work is clearly evident. Any last thoughts?
CG: Independence is a value that our society has held and continues to hold as sacred. Interdependence is what I value. It takes strength to ask for help and to accept it. We help each other. Our world is moving quicker and quicker, it is hard to keep up. As I have described, life stressors include raising children while trying to make ends meet and also trying to meet our own goals and ambitions. Our parents are living longer and in the best of circumstances they are living healthier. But there comes a time, usually, when illness in some form or another hits. How do we keep our parents living the best possible way for themselves? Isolation for any of us is not the answer. Intergenerational living and programming is valuable. When a young person has never spent time with an older person, that kind of relationship is foreign. As with anyone…be curious and interested in relating to the elders in your life, and model that for the next generation. For our children, we want them to develop curiosity and interest, too. In older relatives, we want their worlds to be active and stimulating…of this life. Living together is not always the best answer, as I said, but living nearby, either in their own home, or a facility or even a rear house on our property, creates opportunities for interacting and relating and they are extremely important. Which I guess goes back to where I started, growing up with both grandparents nearby, which was the beginning of all of this for me.