I’m Karen Kelsey, a SCANS Geriatric Care Research Analyst at My Health Care Manager. My sister and I recently turned to My Health Care Manager to provide our family with geriatric care management services for our 79 year old mother. Being a caregiver for an aging parent can be both rewarding and challenging. By sharing my story, I hope to help other adult children who are making this journey.
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Most current research suggests that caregivers should interact with older adults with Alzheimer’s in “their” world to minimize anxiety and frustration. This means not correcting them when they tell you they went to work today, drove to the store or had a conversation with their Mother. It does no good to remind them that they haven’t worked in 40 years, driven a car in 5 years or spoken to their Mother in 20 years. For these events are still very real to them, as the past has become their reality.
My Mother’s retreat into the past affects everything about her life. She is appalled that a BLT is $6.95 on a lunch menu. She doesn’t understand why my Father hasn’t come back from a business trip. She tells medical personnel she is 45. When I am with her, I feel like I have stepped through the door of a time machine that has set the clock back by decades.
Stepping back in time helps me connect with my Mother. We have lively conversations about her job and shopping trips and she glows with pride when I compliment her new hairstyle. I don’t overload her with too much information or share plans in advance. I respond from my place within the time machine, where my Mother is much younger and I am much older.
My Mother’s birthday is coming up. My sister and I have planned a celebration with her friends from her memory care neighborhood. We will have a cake with her name written in sugary icing, balloons, party plates, favors and presents. It will be reminiscent of birthday parties from within the time machine, when the joy of turning a year older with family and friends was all that mattered.
I just returned from a wonderful weekend spent with four friends from college. We have been friends ever since we pledged Kappa Kappa Gamma in the mid seventies, some 30 years ago. We live in four different states and cherish our yearly “girl’s” weekend. Throughout the year, we keep in touch by cell phone and e-mail. However, there is nothing like being together, sipping wine and sharing family news, career challenges, and our love of new shoes. Discussing the pros and cons of reaching the half century mark always comes up too. Among us you will find wives and widows, mothers and stepmothers, and daughters of aging mothers and fathers.
In years past, our conversation revolved around our children. We looked to each other for advice and support as we coped with the terrible twos, middle school independence and aggravating adolescents. Something different happened this year. Caregiving was still a topic of conversation, but centered on our parents, rather than our children. We are all caregivers, with a parent or parents that are facing issues common among older adults: chronic illness, medication management, cognitive decline, financial concerns, fall risk, and driving conflicts.
Each one of us expressed concern and a willingness to help. We wanted to help our parents remain independent and honor their wishes. Yet, we had so many questions!!! All weekend long, we discussed and debated how best to help our parents. Without realizing it, we became a caregiver support group and were comforted by sharing our concerns, ideas and strategies with dear friends. We have continued the support by raising issues, asking questions, and providing updates via group e-mails. We haven’t yet joined the facebook revolution, but have formed our own informal eldercare exchange network to help us cope with our aging parents.
I feel incredibly fortunate to have such a caring group of friends. Their support has helped me through all stages of life and continues to prop me up when I’m concerned about my Mother and how best to help her. I encourage every caregiver to find either an informal or formal support group. Talk to your friends , neighbors and colleagues about caregiving. My guess is you will find someone else who is an active caregiver. Also, explore formal support group opportunities offered by organizations such as the Alzheimer’s Association, local hospitals and/or assisted living and long-term care facilities.
ever seen the Golden Gate Bridge” or “Give every player a penny if they have blue eyes. “ There was a lot of laughter as pennies were lost and gained. To be honest there was some confusion too. One player drew a card – “Take a penny if you have ever visited New York City,” but could not remember if she had been to NYC or not. This is when my Mother shined. For her response was “I bet you have, you should take a penny.” Hoarding is a common behavior exhibited by older adults with later stage Alzheimer’s Disease, and many caregivers will see this behavior in their loved ones. Some seniors hide belongings, some won’t throw anything away and some spend lots of time rummaging through drawers, closets, even refrigerators. In many cases, seniors with Alzheimer’s engage in all of these activities.
Experts have suggested that seniors with Alzheimer's engage in these behaviors because they:
became a good time to reorganize and go through the apartment contents to ensure that we moved the items she was currently using or had sentimental value. I thought this would be a relatively easy task, but I couldn’t have been more wrong. As I began the process of packing, I soon found items in strange places. For example, I found a set of silverware in my Mother’s dresser, framed family pictures in her purse and a shopping bag with shoes, figurines, and greeting cards behind the couch. I also learned to look through everything, such as old purses and jacket pockets, to make sure I didn’t give away anything important – and it’s probably wise for other caregivers to do the same. For example, I found my Mother’s Medicare card innocently wrapped in a scarf at the back of a dresser drawer.
“Still Alice,” a wonderful novel written by Lisa Genova, is about a woman named Alice with early onset Alzheimer’s Disease. The author, who is a neuroscientist, weaves scientific and emotional details of the disease throughout the story. The story is told from Alice’s perspective – a 50 year old Harvard professor who begins to show symptoms of Alzheimer’s disease. The book follows her journey from her initial assumption that her forgetfulness is due to menopause, through medical exams and testing, to telling family members and friends of her diagnosis, to living a life she had not expected. As the story evolves, the reader learns how Alice feels as she struggles with day to day activities such as getting dressed, taking a walk and using her Blackberry. The reader also experiences the pain felt by family members who learn how to be caregivers for Alice while coping with the knowledge that they may have inherited the gene that causes the disease. The awkwardness expressed by former friends and colleagues jumps off the page as they struggle to interface with an Alice who is different from the Alice they remember.
My Mother has lived in an Assisted Living facility for almost two years. In many ways she has adapted well and I think she is comforted by the fact that I live nearby. However, as her Alzheimer Disease progresses, I often hear “I want to go home.” In talking with others, I’ve learned that this is quite common... yet hearing it tears at the heart of every caregiver I know.
Following are some tips you may find helpful when the senior in your life tells you repeatedly: “I want to go home.”
As a caregiver, the responsibility for decisions regarding your parent’s care falls to you. Often you wish you could discuss the options, choices and next steps with your parent, just as you discussed so many choices in the past…where to go to college, where to have your wedding reception, which neighborhood to select. But parents with Alzheimer’s cannot help with current decisions as their ability to reason, compare and choose has been ravaged by the disease. Sadly, dementia robs them of their ability to chart their own course.
So, what should caregivers do when faced with a variety of paths – how do you know how to choose what is best for your parent? How do you know when a parent’s living environment is no longer safe? How do you know when a parent needs more assistance?
Here are a few suggestions:
Once you have gathered the above information, spend time thinking and talking to others you trust about the findings. Choose the next step based on what you think is best for your parent at this moment in time. For instance, if you determine that they need more assistance, think about the pros and cons of providing additional assistance in their current environment vs. moving them to a new environment such as a Memory Care Unit. There is no “right” decision. Take comfort in the fact that you have been both thorough and thoughtful when you made the decision. Always remember that your parent is better off when you address concerns as they arise vs. postponing decisions until a crisis arises.
My Mother has declined precipitously during the past six weeks. We’ve watched helplessly as her confusion increased, her mobility worsened and her sense of time and place evaporated. Yet, a routine Doctor’s appointment and lab work did not reveal any treatable physical changes.
Yet, everyone around her noticed the decline – my sister, the companion, her Health Care Manager (a geriatric care manager from My Health Care Manager) and the nurses at the Assisted Living facility. We were saddened to see my Mother struggle with this new stage of life and worked together to offer additional support. We all ASSUMED that this was the natural progression of the dementia.
Our Health Care Manager was puzzled by what my Mother was experiencing. She had worked with many, many seniors and felt that my Mother’s cognitive decline did not fit the typical pattern. She felt that the changes my Mother started to experience happened overnight vs. being a gradual process. It bothered her, so she sent a letter to my Mother’s physician and explained her concerns. This led to a conversation between my Mother’s Doctor and the Health Care Manager. As they reviewed my Mother’s case, a light bulb went off. My Mother had a medication change in December….was it possible that the med change was negatively affecting her current physical and mental state? Was it possible that the changes we’d noticed were not necessarily caused by the next stage of the dementia, but a medicine interaction?
Thanks to the Health Care Manager’s detective work and follow up with the health care provider, we’ve stopped the new medicine that was added to my Mother’s care plan in December. We have our fingers crossed that we will see a difference and that some of the decline will be reversed. It is possible that there are other causes – a series of small strokes, for example. But for now, we are addressing what the Doctor thinks is the most likely cause.
We’ve learned a good lesson. Never assume that even small changes are “normal” …question everything! And seek professional help whenever necessary.
Remember Hillary Clinton’s book It Takes a Village which was written to address caring for children? I find this same approach applies to the senior population. It really does take a group of people, making a concerted and coordinated effort, to assist seniors as they age. It takes time and careful thought to build a “village” for your parent. Following are a few ideas to help you get started:
Care assistance and expertise is available from many sources. Plan your village now - don’t overlook the many ways a support system can be built for your parent.
The irony is that I remember my Mother reading Passages when I was in high school…probably about the time my Grandmother came to live with my parents. A quick look on Amazon revealed that the Passages book was written over three decades ago. It has been re-released as a 30 Anniversary Edition with an updated introduction. A quick review of the Table of Contents revealed its relevance. The chapter titles resonant with my life of 50-odd years and I plan to read the book. I think it is about time I learn more about Passages – Predictable Crisis of Adult Life, as I feel I’ve experienced a few already!My Mother turned 80 about two months ago. When we celebrated her 
birthday, she kept repeating the fact that she couldn’t be 80, as she didn’t look or feel 80 years old. She is right – she doesn’t look 80 and I am glad she does not feel 80. But the fact remains that at 80, my Mother is not quite the same woman she was a decade ago. Thankfully, she is still kind, warm-hearted, gracious and funny. Yet, her cognition is not what it once was and due to memory loss, the memories she recalls are an odd jumble of past events, friendships and family ties. Lately, she tells me she wants to “visit” her Mother and speaks of my Father in the present tense. Unfortunately, they have not been with us for over twenty years.
While I have gotten used to my Mother’s forgetfulness and oft repeated questions, her recent conversations which include a description of an outing with my Dad are unsettling. We all miss him terribly and it is hard to know what to do when my Mother speaks of him as if he just left the room a moment before. Sometimes, I try to gently remind her that Dad has passed on. But most of the time, I just let it go and let her enjoy a past recollection ….as if it happened yesterday. I’ve decided this is the kindest approach and I’m hopeful that the scattered memories bring her comfort and joy.
For the past year, I have been doing my Mother’s laundry. In the beginning I did everything – sheets, towels and personal laundry. Soon that became too much – and I made arrangements for the Assisted Living facility to wash the sheets and towels. But, I still did my Mother’s personal laundry because she did not want other people “touching” her things.
This plan worked at first, but proved to be very time consuming. It seemed that I was always behind on laundry. I tried putting loads in before work and drying them when I got home at night. I tried doing multiple loads on a Saturday AM. I tried picking it up from my Mother more frequently and doing smaller loads at a time. I tried multi-tasking by doing laundry and paying bills in the same evening. But the laundry was ever present and the pile seemed to grow each day, despite my best efforts to take control of a seemingly easy task. My frustration piled up too.
I finally accepted the fact that “doing the laundry” was a task that could easily be done by someone else. All I had to do was convince my Mother that someone else could do it too. First, I talked with the administrator at the Assisted Living facility. I learned that they could do the laundry and that they did each resident’s laundry separately. They also used the detergent provided by the family, so that the laundry did not come out with an industrial smell and feel. Finally, I had a frank discussion with my Mother and told her that I was having a difficult time finding the time to do her laundry and tote it back and forth. I suggested that we “try” having her clothes washed on site.
Thankfully, she agreed and so far so good. I have been “laundry-free” for two weeks. I cannot begin to describe how getting rid of this chore has improved my caregiving outlook. My Mother has adjusted very well to the new arrangement.
My advice to all caregivers is to evaluate the many tasks on your plate and try to find ones that can be done by others. Whether it is laundry, grocery shopping or driving a parent to a weekly physical therapy appointment – enlist or hire someone else to assist with these tasks. You will be so glad you did. You will be better able to face the next caregiving challenge because your reserve of time and patience has not been depleted by routine tasks.
In most practices, doctors are busy, the front offices are short staffed and the nurses are swamped. Is it any wonder that calls don’t get returned promptly or orders don’t get faxed in a timely manner? While there is an easy explanation for these delays, it can be frustrating to a family that is anxiously awaiting test results or a prescription change for their parent. 
I hear it all the time from everyone I know. “I can’t get through to a nurse…I left a message on voicemail and haven’t heard back from anyone…I am tired of pressing 1 for this and 3 for that and never getting any real information or a live person.”
These experiences are especially troublesome when you are worried about your parent and want information as soon as possible. It can also be difficult to find times to talk privately during the work day, except for a lunch hour or during a short break, so waiting for a call can be very hard to manage.
So what do you do?
These suggestions are based on my own personal experience and I hope you find them helpful. They are meant to help facilitate communication between a physician’s office and a senior’s family when a voicemail culture seems to be impeding communication.
Asking for help is difficult. Accepting help can be difficult too. For some of us, asking for help feels like failure – i.e. if we can’t do it - we must not be smart enough, capable enough or care enough. However, nothing is further from the truth. Asking for help is sometimes the absolutely best thing caregivers can do….not just for themselves, but for their parents.
It is impossible for any one person to be an expert on everything. It is impossible for any one person to manage a huge number of caregiving tasks, in addition to managing work and family responsibilities. Sometimes going it alone is not feasible or practical.
Finding help is not difficult. Tap into all the resources you can think of – use your informal network of friends, neighbors, and co-workers. Consider developing a formal network with case workers, companion services, home health agencies and geriatric care managers. This week, I estimate that the Geriatric Case Manager I work with here at My Health Care Manager saved me about 8 hours – by making phone calls to share concerns about my Mother’s declining health with the doctor and the assisted living facility. Then she followed up to make sure the doctor’s recommendations were followed and the tests he recommended took place. This represented hours of work that would have been very difficult for me to accomplish in the midst of a very busy work day.
The bottom line is that my Mother’s care is better when I utilize help. Problems are more quickly identified and addressed. Our Health Care Manager always keeps my sister and me informed, so we don’t feel disconnected from the issues surrounding my Mother’s health or care. Additionally, our Health Care Manager offers suggestions and insight based on years of geriatric experience that help us provide the best care possible for our Mother.
Don’t be a hero by trying to go it alone. Caregivers don’t look good in capes.
Ask for help!
Since I don’t have a healthcare background, I had a very limited understanding of physical therapy. I thought it was only “prescribed” after an injury or surgery to help with rehabilitation. I didn’t realize it could be “prescribed” to treat on-going issues often faced by seniors, such as loss of mobility or balance deficiencies.
We became concerned when my Mother became increasingly unsteady on her feet and had difficulty getting up from a chair. We thought these symptoms were signs of progressing disease or advancing age and “came with the territory.” When we shareed these concerns with my Mother’s gerontologist, he ordered a physical therapy evaluation and three physical therapy sessions a week to increase her mobility. My sister and I were thrilled to learn that exercises could help and that my Mother could be taught techniques to help her get in and out of the car and move around more safely and easily.
Mother has been attending her “exercise class” for about two weeks. She told me she likes it and that they do most of their exercises while sitting in a chair… so it is not too difficult. We are thrilled she is paying attention and participating. Earlier this week, I took my Mother out to dinner. We were seated in a long, low booth. As we went to leave, I offered my hand to my Mother to help her up. She looked at me and shook her head and said “No, I need to use my legs.” And I watched in amazement as she positioned her feet and pushed up with her legs and got out of the booth. We both reacted with big smiles – because she had “done it herself.”
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Eric Tinsley
Alan Stanford 
Jean Bandos
Karen Kelsey
Natalie Crohn
George Slater
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