Plan by Choice, Not By Crisis The SeniorScape®
The past few weeks have been difficult. While work Travel was tiring it was the personal situation on top of it that became stressful and exhausting. A situation that millions of people are experiencing each day.
The interesting fact is that I’m not the direct responsible party, In actuality, it’s my daughter, a full-fledged member of the sandwich generation.
For the past several years, my ex-husband, her father, has been in physical and cognitive decline. My daughter, age 43 with 3 children and demanding job responsibilities, has been the central figure in his care. Like many caregivers, she’s had to arrange medical appointments, living situations as his status changed, assume responsibility and care of his finances, shop for groceries, etc. She lives 45 minutes from him but, every few weeks, arranged her schedule to visit him and keep his surroundings livable.
I told her when she began the journey, that it would not remain at that level.
There would come a time when the demands would greatly increase, demands on her time and energy.
Intermittently she would discuss his status and tell me what she was experiencing. Beyond offering her advice and guidance, there was little I could do. As the situations unfolded and became more serious, it pained me to hear her exhaustion, knowing full well that at some point there would be a precipitous decline that would take an even greater toll her on her, physically, emotionally and mentally.
In recent months she began talking about finding an alternative living situation for him as it became increasingly apparent it was dangerous for him to be alone. There were several instances of not shutting off the stove which resulted in calls to the fire department, inadequate self-care, falls, medication mismanagement, inability to care for his physical environment.
The senior living community had become weary, and she became fearful they would kick him out!!! There were several trips to the ER after which he would only be returned home. She visited numerous doctors in an effort to get him a diagnosis of dementia so that he would qualify for home care, Each doctor she visited didn’t seem to understand the seriousness of the situation and didn’t test him accordingly. She recounted one doctor visit that dismissed his hallucinations as a type of psychosis. He based this on a few questions about current events which he was able to answer correctly. My daughter told the doctor he watches news incessantly which was likely the basis of his correct responses.
Finally, two weeks ago she called me frantically. He had to move!!!!! It was the last straw. It was one of many calls she received from him stating there were people breaking into his apartment (there were none) and that her husband and his friends had been at his house and were pistol whipping him. There were of course, no signs of any such thing.
What should she do???!!!! I advised her of some options, the best one being to get him admitted to the hospital for a 3-day stay which would qualify him for admission to a short-term rehabilitation unit in a skilled Nursing facility. in the interim, I’d work on finding a suitable short-term unit. But there didn’t seem to be any immediate need for hospitalization.
Alas, last week she called me thrilled. It was the last straw!!! The fire department was called to his apartment once again because the stove was left on. He was becoming a danger to himself and the other building residents. Adult protective services visited and determined his surroundings were unsafe and arranged for him to be brought to the hospital.
She and her friend decided that Saturday evening they would take a trip to clean his apartment, taking everything out in the event he was going to be evicted. She called me Sunday morning. My daughter and her friend had been there from 8 PM Sat until 6 AM Sunday. What they found was horrific. How could it have gotten that much worse in the few weeks since she had been there? At that moment she knew her father could not return home, so now what????!!!!!
When I saw her Sunday night she was beyond exhausted, frankly at the end of her rope. For some time, I had been telling her about the importance of self-care because this is what would eventually happen. I don’t think she really believed it.
My daughter is a powerhouse, and like many caregivers in a similar situation, probably believed in her own will, stamina and the need to keep going for everyone, her family, her job, her father. I warned her there would be a time when she couldn’t go any further, I think her experience in his apartment was it. She hit the proverbial wall. When I saw her Sunday night she had collapsed.
Even though the hospital didn’t find an immediate reason to keep him, I told her what to say so he would be admitted for the required 3-day stay.
I proceeded to make phone calls and send text messages, to everyone I knew in the industry connected to facilities which I would consider even halfway acceptable that were also within proximity to where she lived. After all, knowing what I know, there are but a handful that I would consider even remotely acceptable.
I came up with 5 possibilities and she flung into action contacting admissions directors and filling out applications. Thankfully because she had been dealing with the situation for some time, she had most of the required paperwork at hand. However, as with typical busy lives, a home and a recent kitchen remodel, some of the papers were no longer at her fingertips. This created even more Anxiety for her.
Her father was supposed to be discharged Thursday but I coached her on what to say so the hospital would keep him a few more days. We still had no place for him to go.
The issue was that he did not really qualify for a short-term rehabilitation placement. He walks without assistance, and except for medication management related to his Diabetes, there are no other qualifying needs.
She became discouraged. He could not return to his apartment under any circumstances. Several of the places I contacted had already rejected him based on his lack of a short-term rehabilitation need, the highest reimbursement a facility receives and therefore, the most sought-after admissions.
The hospital case manager suggested a few others. My daughter remembered me mentioning a few of them in past years. They were out of the question. It’s a shame any person must move into such an environment. The case worker tried to tell her one of the places had been completed remodeled. “Means nothing”, I told her, it’s nothing more than a chandelier effect, like window dressing. All too often people are swayed by that. In this instance, the ownership owns that one building and it’s out of the question.
She did visit one of the facilities I suggested for long term care, which seemed like the last alternative. I warned her what she would see ahead of her visit and indeed she was jarred by the experience and said, “definitely not”.
The memory care unit was even worse. Though they called it a memory care unit, it didn’t have even a modicum of what would qualify for an acceptable environment to care for people with advancing cognitive difficulties. The sad reality of the-majority of the environments that this country offers to people in need of such care. My fervent wish is that as there is ongoing research and advances towards a cure for Alzheimer’s Disease and associated cognitive impairments, there would also be a discussion on the care we are providing to people presently living with the condition.
My daughter’s next thought was that after a brief placement in a long-term care environment, he could transition to an assisted living instead; however, they hadn’t even begun the Medicaid application and the one assisted living that would accept Medicaid wouldn’t accept a pending application. Additionally, The Medicaid application for assisted living is different than for long term care. If the application began at the long-term care site, it would not allow for proceeding with another type of Medicaid application.
Finally, the case manager at the hospital recommended a facility I hadn’t thought about but, like many, it was under new ownership. I contacted a few people I knew. Alas, several years ago I worked for the company that bought that facility and it certainly ranked as better than most of the others. Thankfully, I knew one of the regional directors. It was now Friday late morning, and the hospital was discharging him Saturday.
Fortuitously, the regional director answered the phone when I called. Of course, he remembered me. I explained the situation, there was not a moment to spare. He agreed to contact the social worker and administrator. In the interim, the hospital sent a referral to the facility, and they were sending someone to interview her father at the hospital.
It all worked!!!! The regional director spoke with the administrator and being my previous relationship with the company and the regional director, they accepted her father. My daughter received notification. A wave of relief swept over her.
Yesterday she had to go to the facility to sign some papers. She told me when she saw her father, she couldn’t believe the degree of decline in just a few weeks since her last visit with him. She realized he now definitely needed to be on a memory care unit and thankfully, this one was one of the better ones.
We are both so deeply grateful to the regional director who helped get this done so her father is now in a safe environment.
It was extremely difficult for my daughter who had the benefit of my support, experience and the contacts I have in the industry. Her emotional roller coaster with her father’s decline being the main caregiver and finding herself in that crisis moment when decisions had to be made were overwhelming. This is one of the reasons it is important to have these delicate discussions ahead of the time when you will need to make these extremely difficult decisions. This allows you to plan by Choice, because You can’t make the best decisions when you are in a crisis.
It makes me think about the families who are trying to help a loved one. They don’t know where to turn to make the best care decisions based on the options available and they don’t have access to an experienced advocate who can help them understand the different levels of care and the possibilities based on their loved one’s needs.
The reality is the caregiver who cares for their older parents or loved ones, especially those who display decline in cognitive function experience loss on a variety of levels.
Once a person assumes the role of caregiver, whether they realize it or not, there may be loss associated with the fact that the parent they used to know, that used to care for them now, is in need of care, and as the parent’s care needs increase, the sense of loss intensifies.
The loss may be related to the loss of personal time to devote to the things they used to enjoy, whether it be their own family or favored passions or activities. With increasing care needs, which will occur, the caregiver may find themselves devoting ten, twenty maybe even thirty hours week to Caregiving responsibilities, something they did not anticipate when initially taking on that role.
This results in Burnout, Stress, overwhelm and fatigue. Oftentimes worry and guilt are added to the mix of emotions the caregiver experiences.
Concomitantly as the parents’ cognitive decline increases, the adult child is also dealing with the fact that their parent is not really the same person they knew their entire lives. In fact, it’s almost as if they’re experiencing the gradual loss of their parent before their very eyes.
Their personality may have changed, they may not recognize the caregiver, their entire person may no longer be evident. This loss creates a deep-seated sadness that is probably exacerbated by caregiving responsibilities.
The possibility exists that because of the overwhelming nature of the caregiving
responsibility and the associated emotional and physical effects, the caregiver may not recognize these Grief feelings.
Despite-the-fact that is my ex-husband, I also am saddened to know that he is now in that situation. I felt my own wave of grief sweep over me the past two days. But for my daughter, she probably doesn’t realize the path of grieving she has been on the past few years. It will likely take a little time before she is able to come to terms with it.
It’s so important for people to have these conversations ahead of the time when these decisions need to be made.
In writing this blog, I think of the millions of caregivers going through similar experiences, people who have no one to help them navigate the terrain the way in which I was able to help my daughter or to help them understand their need and strategies for self-care because, ultimately, like a car that runs out of gas, so will they.
For more information or assistance for navigating these difficult conversations and/or to Plan by Choice, Not by Crisis, feel free to email phyllis@phyllisaymanassociates.com or book a time for a free consultation call: https://calendly.com/phyllis-31/laying-the-groundwork-2
Originally Published on https://www.phyllisaymanassociates.com/
