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Dealing With Issues

The Price Of Denial

When something bad happens to us, it just plain sucks. Whatever it is, we don’t want it happening. We want it to go away. But realistically, in order to address the situation, we have to acknowledge the bad thing that’s happening. We have to face it. At least I do.

I’m not one to say, “I’ll cross that bridge when I come to it.” To me, that’s the same as sticking my head in the sand. While I try to stay mindful and present, not facing a dilemma, especially one as huge as dementia, and figuring out my next move is allowing the situation and time to ultimately make the decision for me.

Last Fall I took a two-hour seminar for caregivers coping with dementia. The program was delivered by the local Alzheimer’s Association. After the class was over, the facilitator told me she was glad I attended. “You’re way ahead of the curve. Most people wait for a crisis before making plans or arrangements.”

Most of the people in attendance were caregiving a parent with dementia. A couple of caregivers voiced frustration with siblings in denial of the disease, making it difficult for the caregiver to create an action plan for the future. Denial is most often based in fear. Fear that they will get the disease. Fear that they will have to put their loved one in a nursing home. Fear that their loved one will forget who they are. The person in denial doesn’t want to take any action as if they can freeze time.

But, we can’t freeze time. Accepting the diagnosis is realistic. It is what it is. A dementia diagnosis is tough. Denying the reality of the diagnosis makes it even tougher on everyone involved. Especially on the caregiver who desperately needs support of all kinds. Denial delays important decisions to be made. Worse yet, it puts the dementia patient and the caregiver at risk.

The person in denial actually creates more stress for an already burdened caregiver. According to an article by Carole B. Larkin “Denial Is Dangerous In Dementia Care” at http://www.alzheimersreadingroom.com “denial causes stress to the caregiver — even to the point of a serious heart attack, stroke or other fatal event.”

Denial also prevents the family from getting out ahead of the curve that I have apparently already rounded. Aside from addressing the specific wishes of the patient while they are still cognizant, denial hampers decisions regarding legalities such as powers of attorney, wills, living wills, healthcare directives, ongoing home care versus assisted living choices, when is it no longer safe to drive and more.

For me, knowledge has always been power. Power to understand what I am up against. Power to make informed decisions. Power to prepare a plan. Power to stop worrying so much about what is coming. Power to enjoy today because I did whatever I could do now about tomorrow.

I can only rely on research, doctors and others’ experience to glimpse what is coming. I try not to let my imagination run away with my mind. There is comfort in knowing I am doing what I can to prepare. Because of that knowing I feel sorrow for the caregivers tethered to relatives steeped in denial. When the crisis comes, it will most likely be the already stressed caregiver who makes hasty arrangements along with hasty decisions. The relatives who live in a world of denial are apt to continue living in that world. Realism is not their strong point.

If I were to put myself in the position of the caregiver with relatives in denial, I would seek legal counsel. I would look for a way around the deniers in the best interest of my loved one. I would become an advocate who makes as many arrangements as possible now. I recognize taking this course of action is what family discord is often made of, but the caregiver’s obligation is to the one who needs care as well as caring for themselves. This is a case for putting your own oxygen mask on first — otherwise you can’t help the other passengers.

Facing a dementia diagnosis and taking appropriate action to protect your loved one and yourself is not being mean or nasty. It is being realistic. And, dementia is a disease in need of realism.

 

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Why Me?

When events we perceive as bad happen in our lives, we often ask the question, “Why me?” I did that. The answer is, “Why not me?” I’m not so special that nothing bad should ever happen to me in life. I’ve had mostly good in my life. Yet the weight of this challenge falls heavily on my shoulders. According to a test given by Coach, I feel much more burdened than most caregivers. I already know that’s because of my personality, one that wants to fix everything, make it right. What I’m faced with now cannot be fixed. It weighs heavily. It frustrates. It burdens.

As Coach and I discussed ways to reduce my stress, I sipped a decaf, non-fat milk latte at a local coffee house. There! I’m trying to take care of myself. Yes, I try to eat a well-balanced diet. I try to get in regular exercise by walking. Sleeping through the night still eludes me. Despite taking classes and reading about how to get a good night’s sleep. Yes, I have a great support system, including Coach. Yes, I try to be mindful of the present. Mind-spinning overtakes me at times. Yes, I have hobbies, like drawing and gardening. And, I write, cathartic for me. Yet I still feel the weight on my shoulders.

After about 45 minutes, latte finished, I leave the coffee house. Coach goes his way. I go mine. The winter chill fills the air yet it’s warmer than it has been in days. I see the tire pressure light come on my dash. It happens in the fall and again in the spring, a fluctuation in temperature setting it off. I ignore the light thinking it’s just the warming day.

Then, driving past an elementary school, watching parents filling the driveway to pickup their kids, I hear a thump, thump. Oh no! I have a flat. As the thump turns into a shuddering of my SUV, I find a place to pull onto the shoulder. The front driver-side tire is spewing small bits of smoke out of several holes in the side wall. What the heck?

I call Martin. Waiting I walk around the car to find the two air caps missing from the passenger side tires. By the time Martin arrives, I’m wondering if the tire was slashed.

Why me?

“Wow, look at that!” Martin exclaims as he waves his arms at the tire.

“Can you change it?”

“No, no. I don’t know.” He goes to the back of my SUV, seemingly confused about what to do next. I open the trunk. He pulls off the overlaying carpet. I do have a spare. He looks puzzled. Again, “I don’t know.”

I think of the last time I had a flat, some twelve years ago. He knew immediately what to do, pulling out the spare, fitting the jack together, in charge of the situation. My heart sinks for the umpteenth time, tears swirl at the edges of my eyes.

“OK, let me try to find a roadside service.”

Roadside assistance arrives, changes the tire. The man comments about what could have done such damage. I counter how I’m wondering if it was slashed. He agrees commenting I would have seen and felt anything to cause five holes at various intervals around the sidewall.

Why me?

After talking with the coffee house manager, my insurance agent, filing a police report and getting a new tire, I am whole again. I laugh in a lopsided way at the irony. Leaving a meeting where the topic of reducing my stress is discussed to find I am the victim of a random act of meanness. I comfort myself with the usual thoughts that it could have been worse. I could have been hurt on the road. I could have come across the perpetrator in the parking lot and been attacked.

Whatever my thoughts, the incident is what it is. I can’t change it anymore than I can change the outcome of Martin’s PPA. Life is not always fair as we see it. We want to be happy. We want to be good and receive good. Yet, I know out of some of my greatest failures in life have come my greatest successes. Challenging or even unsavory events are not necessarily bad. They can be a catalyst for bettering your circumstance, your attitude, your viewpoint. They can create a ripple effect changing your trajectory.

While I may have continued with my out-of-control stress, the tire slashing incident puts my life in perspective. I am stressing over something I cannot change. The role of caregiver is simply part of my journey. Feeling burdened and frustrated is not going to make it better. In fact, it will, most likely, make it worse.

Why me?

Why not me?

 

 

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Why Am I A Caregiver?

I’m a caregiver because my husband has Primary Progressive Aphasia, a rare form of dementia. As a caregiver, I participate in a program at Greenville Health System designed to assist caregivers with the weight of caring for a loved one with dementia. Today I’m meeting with the MSW (Master in Social Work) “caregiver coach” assigned to me. For purposes of the blog, I’ll just call him Coach. This is our second meeting.

The program is part of GHS’ Success In Aging Program (https://www.ghs.org/healthcareservices/medicine/geriatrics/centerforsuccessinaging/reach-program/). Following is a partial description of the program:

“GHS’ Memory Health Program seeks caregivers for patients with Alzheimer’s disease or related dementia to take part in a research study called REACH. REACH aims to improve knowledge and support for caregivers, thereby reducing stress and enhancing their ability to care for their loved ones.”

God only knows I need a reduction of stress.

My husband doesn’t have the most widely known form of dementia, Alzheimer’s disease. His is more rare, with only about 200,000 having PPA. There are about 2 million with some form of Aphasia.

The word Aphasia first came on my horizon in early 2014 after Martin had a visit with his primary physician. Coach tells me he has only encountered one other Aphasia patient; otherwise he would not know what Aphasia is. That is the story of my recent life, making it more difficult to carry out my responsibilities as a caregiver. After several years of trying to figure out what was happening to Martin, I often know more about the disease than the professionals do.

Coach gave me a manual “Dealing With Dementia: A Caregiver’s Guide”. Primary Progressive Aphasia is not even listed in the manual as one of the forms of dementia. The lack of understanding and recognition of this disease in the medical community is a form of frustration for me.

What is PPA?

According to Northwestern University where most of the research on PPA takes place, the symptoms are typically quite different from other more typical forms of dementia, which are recognized by cognitive decline. For the majority of individuals with PPA (approximately 60%), language is the only area of decline. For the other 40%, the changes in the brain will begin as changes to the language centers, but will eventually evolve to be more widespread across other areas of the brain and, in turn, result in decline of other functioning beyond language. PPA will lead to eventual loss of communication functioning in all domains of language — understanding others, speaking, reading, and writing.

There are dozens of different kinds of dementia syndromes. Something I was not aware of until the last few years. I’m still learning.