(This column is part of “The Light of Faith and Care at the Sunset of Life,” a series on the Catholic Standard website and newspaper on the Catholic response to end-of-life issues. This series is done in coordination with the Office of Life Issues of The Roman Catholic Archdiocese of Washington.)
At the age of 39 with duties as a wife, and as a mother to four young children, my world turned upside down when my mother’s physician told me that my mother had lymphoma in addition to vascular dementia. My brothers and I were keenly aware of the fact that Mom had been very forgetful over the past year – as she would frequently lose her car, insist the car was stolen, forgot to cook the Christmas turkey, or call us repeatedly, telling us the same news over and over again. However, in our eyes, Mom was still physically able to live in our childhood home alone, drive and take care of her daily needs. What I didn’t realize was that my life was about to drastically change as I was thrown into the role of primary caregiver for her – a role I had to disguise from her because in her eyes, “she was fine.” For 10 years, I navigated the world of dementia with my mother as I continued in my full-time role as a spouse and mom to my family.
Although I have been a geriatric social worker since 1991, being thrust into the role of primary caregiver for my mother opened my eyes to dementia care through the eyes of an adult child, rather than a provider. Technically by today’s standards, my mother was relatively young to receive a dementia diagnosis. She was just 71 years old. Her very attentive geriatric primary care physician suggested a brain scan to determine the type of dementia. We did follow through with this, although we had to creatively coax my mother to the CT scan. It was determined that she had vascular dementia and not Alzheimer’s. While both Alzheimer’s and vascular dementia can show in very much the same way, it is always good to rule out Alzheimer’s as there is a genetic component to this diagnosis which is good for other family members to know.
Whether or not your loved one has vascular dementia, Alzheimer’s, frontotemporal dementia or Parkinson’s dementia, assuming the role of primary caregiver is challenging.
Dementia is a progressive disease. The care needs of an older adult in the early stages of the disease process might simply be supervision – ensuring that they are safe in the home, are eating their meals, taking their medications, showering, etc. In my role as a caregiver as well as a geriatric care manager, the first stage of dementia can be the most difficult for family caregivers. Your loved one is forgetful but gets angry when corrected. Your loved one may get lost when driving but resists when you attempt to take the car keys away. Your loved one may no longer want to shower and may wear the same clothes repeatedly.
Important services at this stage could include adult daycare, in-home caregivers or placement in a memory care assisted living facility. Many of the private duty agencies that provide in-home care also offer companion care if personal care or “hands on” care isn’t necessary.
Adult day programs are an excellent way to offer engagement to your loved one and respite for the caregiver. There are medical day programs as well as social day programs. In the D.C./Maryland area, some excellent adult day programs include Holy Cross Adult Day Care, Winter Growth, the Jewish Council for the Aging’s Kensington Clubs, Easter Seals, Iona Senior Services, Genevieve N. Johnson Senior Day Care Center, Brookland Senior Day Care Center, Crescent Ridge Adult Day Health Center, Helping Hands Adult Day Care and more. The day program is normally from 9 a.m. to 3 p.m. and is far less expensive than private duty care in the home. Remaining at home with one-to-one care can often be isolating. Adult daycare offers engagement, socialization and dementia-specific activities.
Medical care
Dementia affects the brain which ultimately affects behavior. Having a good geriatric psychiatrist or neurologist on board is essential. “Treating” dementia involves treating the disease (medication) and integrating behavioral based therapies to treat the behaviors (reduce triggers, offering reassurance, redirecting, repeating instructions, etc.).
As the disease process progresses, it is often more difficult to take your loved one out to physician appointments. Over the past 15 years, a number of primary care, “house call” practices have emerged, helping home-bound older adults receive primary care services in the home. Most practices have nurse practitioners who come to the home every six to eight weeks. In addition, lab work and X-rays can be performed at home, negating the necessity of going out for medical care.
There has been much written about “the language of dementia” and how to talk to your loved one with dementia. Teepa Snow is an excellent therapist who has written books and gives talks on this subject. It is well documented that “reality therapy” does not work with older adults with dementia. A better approach is to “get into their world.” In my practice, I have often heard family members say, “Mom really needs to know that she has dementia.” First of all, no person with dementia will ever understand or accept the fact that they have dementia. Emphasizing this fact with them is a lost cause. Teepa Snow recommends, as do I, that you need to get into their world. If your loved one is on a cruise, you are right there with them. If they are looking for their mom or dad, you offer to help them and redirect the conversation to reminiscing about mom or dad. I remember an excellent geriatric psychiatrist telling me to assess the “benefit versus burden” of what you feel you need to tell your loved one with dementia. It is important to ask yourself, “What will they gain from knowing this information?”
Once, I picked up my mother for an appointment and she was highly agitated when she got into the car. She shouted, “I can’t believe they let me out.” I thought about this statement and responded, “Where were you?” She responded, “jail.” Knowing that she had just come from her memory care home, I didn’t correct her, but rather asked her, “What did you do that landed you in jail?” At this point, she began to laugh, and we were then on our way to the doctor’s appointment. Getting into their world and meeting them where they are diffuses difficult situations and anxieties much faster. I was able to teach my children subjects to discuss with “Gama” and those to steer clear of. For 10 years, my children learned the “art” of dementia talk as they visited with “ga-ma.”
With many spouses and adult children, care for their loved one with dementia at home can become overwhelming and isolating. It’s important that the caregiver has support. Too often, we see caregivers declining because of their caregiving responsibilities. Caregiver support groups are a good option and are offered virtually and in-person throughout the DMV. How do you find a support group?
The Eldercare Locator, a service of the government’s Administration for Community Living, has a hotline at 800-677-1116 that can help find services in your area. Also, each local chapter of the Alzheimer’s Association and the Parkinson’s Foundation have listings of local support groups. Lastly, it is important to know that each county has an Area Agency on Aging which is a clearinghouse or central location for all programs and services for older adults in that county.
Respite care is another option available to caregivers. Should you need to go away for a short period of time or simply need a break from caregiving duties, there are assisted living facilities in the area that will offer a short-term respite stay if they have availability.
Hiring a private duty aide
Hiring a private duty aide in the home to help with the personal care needs and supervision of the adult with dementia can be helpful. It is, however, costly. On average, private duty aides can cost between $35 to $38 per hour. Most agencies have a four-hour minimum during the week and a six-hour minimum on weekends. As a geriatric care manager, I recommend interviewing all potential caregivers to make sure their personality and experience are a good match with the adult needing the care. Once a private duty aide is secured, the agency should develop a plan of care to help direct the aide on his or her duties.
Perhaps one of the most difficult aspects of caregiving is the feeling of guilt if one must place their loved one in memory care. Dementia shows itself differently in every individual. If behaviors cannot be managed safely in a home environment, placement is often necessary for the safety of the patient. A caregiver support group is a good means to work through the feelings of guilt, talking with others who are on the same journey.
My mother had ingrained in us as children that she was NEVER to be placed in a nursing home. However, she most likely never imagined that she would have dementia nor that she would ever run out of the house at 2 a.m., looking for “her home.” At this point, for her safety, we needed a more secure, dementia-specific home for her. Serving as a caregiver can mean providing one-to-one care in the home or visiting your loved one daily or weekly in a senior community. I felt a significant amount of guilt when I placed my mother in memory care. Through conversations with other caregivers, I came to understand that placing someone with dementia in memory care is giving your loved one a beautiful quality of life, as living at home can be isolating. It provides care by trained professionals in dementia, offers daily engagement and continues to allow family to be the advocates.
Memory Care
Memory care facilities come in various shapes and sizes. There are larger communities that offer different levels of care, including memory care. There are also free-standing facilities that specialize in memory care. Also, there are small residential or “group homes” that specialize in memory care with eight to 10 residents per home. When placing someone with dementia into memory care, it is important to look beyond the chandeliers in each facility and focus on staffing levels and quality of care. As we say in our practice, “chandeliers do not provide good care.” It might be helpful to talk to current family members who have loved ones in the facility. It’s important to be aware that there are placement agencies that are paid by facilities to place residents. While this is a helpful service, it is important to keep in mind that they receive monetary compensation for each referral to a facility.
Another option is to consult a geriatric care manager. Geriatric care managers are paid privately by the client. A good geriatric care manager should have a “pulse” on the community’s geriatric services and should be able to recommend only the facilities and services that are of good quality. You can search for a geriatric care manager in your area here: ALCA(Aging Life Care Association).org.
Because dementia is a progressive disease, what one might need when they have mild or moderate dementia is different than what they might need with advanced dementia. Some larger memory care facilities tend to group all adults with dementia on the same unit. However, other communities effectively group residents based on their cognitive level. The smaller residential homes can more easily group residents based on level of cognition.
Geriatric care management
As a geriatric care manager, I would be remiss if I didn’t discuss the benefits of hiring a geriatric care manager to help “navigate” and coordinate care. Although I was a geriatric social worker, my brothers and I decided to hire a geriatric care manager to assist us with Mom. Having this “third party” on board was helpful. Mom saw my brothers and I as “kids.” What do we know? Why were we telling her what to do? However, she listened to our geriatric care manager, who had worked hard at earning her trust. Our geriatric care manager provided so much perspective and support to my brothers and me. Certainly, not everyone can afford a geriatric care manager. They bill by the hour which can be cost prohibitive. Services offered include crisis intervention, in-home assessments, referring, coordinating and managing household and healthcare services, referrals to geriatric specialists such as elder law attorneys, financial advisors and physicians, counseling and support for seniors and caregivers, housing and relocation planning and overall advocacy for the client and caregiver.
Resources:
Positive Aging Sourcebook (free), call 800-394-9990 or go online to positiveagingsourcebok.com
Montgomery County Seniors Resource Guide (free in most libraries and published by the Senior Beacon) or you can order a copy for $6 by calling 301-949-9766
Montgomery County Aging and Disability Services, call 240-777-3000
The Department of Aging and Community Living has a senior service directory of agencies providing a variety of services. Call (202) 724-5626.
Calvert County Office on Aging, call 410-535-4606 or 301-855-1170
St Mary’s County Department of Aging and Community Services, call (301) 475-4200
Alzheimer’s Association, call 800-272-3900 or go online to alz.org
The Parkinson’s Foundation, call 800-473-4636 or go online to parkinson.org
In the 10 years I cared for my mother, I often described this experience to others as a “roller coaster ride.” Sometimes things were on the straightaway and nice, smooth, no urgent phone calls, behaviors manageable and mom agreeable to showering and help with personal care. At other times, we had major ups and downs and had to adjust our plan of care or the way we approached Mom. Certainly, she kept me on my toes. While this 10-year experience caused me many tearful days, in retrospect, it also taught me everything I know today as a geriatric care manager.
Perhaps the greatest gift I was given was sitting at my mother’s bedside for two weeks as her life was slowly ending. In my previous work in hospice and as a Catholic, I have come to learn that the dying process is a very holy time. In my anxiety about leaving my mother alone, the hospice chaplain told me that my mother was not alone. She told me that the room was full of all those who had passed before her, helping her transition from this world to the next. The hospice chaplain went on to say, “This is a very holy time… when the veil between this world and the next is very close.”
My late father used to play “The Alley Cat” song for us as children. As I sat bedside with Mom, there was an accordionist playing music at the memory care home. He proceeded to walk down the hallway and began playing “The Alley Cat” song outside of my mother’s room. I whispered into my mom’s ear, “This is Dad’s song.” As I watched Mom take her last breath, her motionless face broke into a beautiful smile. At that time, I knew that I was watching my mother enter the arms of my father and our Lord after 10 years of this long goodbye.
(Mary Murphy Petrizzo, a Licensed Masters Social Worker, is the owner of Compassionate Care for Seniors, a Geriatric Care Management company in Montgomery County, Maryland. She is a parishioner at St. John the Evangelist in Silver Spring, where her husband Joe serves as a deacon.)
