I was confronted with a difficult realization today when talking with a co-worker. We were working with an older couple, the wife has Alzheimer’s dementia and he is her very devoted caregiver. My Coworker and I discussed the husband’s reluctance to provide needed information to access services. She pointed out to me that they were African Americans from the deep South and may be fearful of outsiders, based on past experiences with systematic racism. I then realized that so many old wounds are being opened with the recent public demonstrations of white supremacy/white nationalism. Older people are reliving the racism of the past.
Here is a great article with information we can all use. You don’t need to be a full time activist, but all of us ordinary people need to DO SOMETHING!
Does anyone else get overwhelmed with the needs of others? How do you manage to remain compassionate over the long haul without burning out?
I have the week off and we are on a family camping trip. I was looking forward to a week with no cable news or cell phone notifications. Turns out our campsite has a signal!
While I’m not a caregiver for any older adult per se, I spend a good deal of my work days entrenched in the specifics of people’s functional deficits. And a little break from it feels healthy.
I believe the most important self care practice is to know your own limitations and what helps you. It is not selfish to take time for yourself. Getting out into nature is a great way to take a break.
Now, back to the campfire…
Everybody has a different reaction to health problems, but one response I consistently hear is, “why me?” A fair question. Life isn’t fair.
Another person recently stated over and over, “I’ve fallen apart, mentally and physically”. When he learned that his assets were depleting, he told his friend and POA, “just take me out back and shoot me.” I told him we could do a LOT better than that for him while thanking him for his service and explaining the publicly funded long term care available to him.
Another visit comes to mind when I was talking with a woman in a nursing home who just had her leg amputated. I saw her staring at my feet, exposed due to the sandals I was wearing. I was suddenly aware that I was reminding her of the leg she will never have back. Why me, she seemed to be thinking.
Then there was the individual I called to remind of some needed paperwork he had not submitted. “You have no idea what it is like to be disabled”, he stated. There is no response to that statement.
There is no place to hide when discussing matters of such importance with people. It is a part of being human myself and acknowledging the humanness in others. Again and again, I am reminded of how fortunate I am and how I must come across to people, many of whom are isolated and have little contact with people other than care providers. It is at these times that I realize the significance of this type of work, even though it is not very glamorous.
Many of the people who need Medicaid funded long term care services have a family member or friend who is assisting them and advocating for them. However, not infrequently, there are people who are alone in the world. They often come to the attention of the resource center through hospitals, meal programs, homeless shelters or other community agencies. They are often the most in need of services. Without help, they likely continue to struggle and suffer on their own or wind up in the hospital, an expensive way to address the problem. They are under the radar until an event causes them to come to the attention of “the system”.
One such person is Joe, an 83 year old man I saw at a local men’s homeless shelter. I had trouble finding him because, despite his arthritis pain, he had to leave the shelter during day time hours and could not hear well enough on his free cell phone. He later said he usually goes to Starbucks or McDonald’s. When we finally were able to sit down, he told me a very sad story of how he had seen his grandson become a victim of violence and it caused some mental health problems. He did not seek help as his social support network deteriorated, leading up to homelessness. It is hard to imagine how a frail 83 year old could get by on his own. Fortunately, he was able to enroll in a long term care program and was assigned a case manager to help him stabilize his housing situation and connect him with a primary care clinic.
Over recent decades, great strides have been made to design innovative long term care programs using Medicaid dollars for this group and they work to save taxpayer dollars and prevent unnecessary crises and suffering. Some programs are based on managed care principles, including capitated funding to community agencies to provide case management and direct services, so they are cost effective. These programs need to continue their good work for people like Joe.
Here is a link to some information about the Family Care program in Wisconsin…
Abuelita translates to mean “dear grandmother” in Spanish. I visited the adult day program for older Hispanics recently and found several abuelitas there. I was meeting with a woman who had three younger generations there with her for the meeting, including a newborn, the baby’s mother, grandmother and great grandmother, all taking care of each other.
Around the Center, some men were playing dominoes and some of the women were helping with chores-sweeping and wiping down tables, occasionally breaking into song, singing along to the Spanish crooner playing.
Having dementia is difficult, but when compounded with a language and culture barrier, its even more so. There is a commonly held belief that Hispanic families are tight knit and don’t institutionalize their elders. This may have been true in the past, but now, family members may or may not be available to care for Abuelita 24/7. Adult Day Care is a great resource for many, but is an absolute necessity if an older family member needs 24 hour care and the Caregivers are working or in school. It also helps to give caregivers a respite break.
NADSA link Adult Day Services Locator
The long term care programs that cover the cost of adult day programs are part of the Medicaid dollars that are proposed to be drastically cut. Please consider contacting your Senator and asking that the Medicaid funding cuts are taken off the table!
One of the most wonderful parts of seeing clients in their homes and connecting older adults with long term care programs is supporting individuals and families in home settings. Along with keeping families together, it allows older adults to have their pets around, improving quality of life for all involved.
One of the most memorable pets I’ve met is Terry the cat-a very large grey cat. His owner, Marie, lives alone and has a limited support system. She told me that he comes running when she calls him Baby.
On one occasion a few years back, I brought my puppy into my workplace, which was an adult day center. One frail woman fell to her knees when she saw the puppy and held the dog with tears in her eyes. “I used to have a dog just like that and I miss her so much”, she said.
In the book, “A Man Called Ove”, there is a heartwarming subplot about his relationship with a stray cat. When Ove peacefully passes away, the cat curls up on his chest.
Pets help us to live in the present moment. It’s important to remember even when someone may be older, possibly ill or have a dementia, animals will likely provide the joy and feeling of connectedness.
I hope you enjoy this slideshow that outlines specific reasons why animals are wonderful companions for older people.
The care system for older adults has elements of paternalism that should be challenged. There is nothing more personal than experiencing illness and making decisions for your self about where to live and how to receive care. Older people still have the right to self direct and make autonomous decisions, even if they are sick with a terminal illness or have a cognitive impairment.
Oh, and guess what, you don’t have to follow Doctor’s “orders”. (And I can say that because my Dad was a physician, he might even have agreed with me..). At least ask “why” and get the answer to your satisfaction if you have questions. Don’t be intimidated!
Take these Independent women as a great example who took charge of their own retirement living and chose to try something new!
Happy Fourth everybody!