Dementia: The Good, The
Bad, and The Ugly AND how not to get it.
We live in uncertain times, if it isn’t COVID, it is the economy, or upcoming elections. As we age, the thought of not being able to care for ourselves or our loved one’s is certain to be in our thoughts. We hear about the rise in the different dementias and hope for a cure that we all can afford. So far, we do not have a cure. The latest “shining star” is Aducanumab. Not approved for everyone or all types of dementia. This drug can have some serious side effects and has to be given IV so it has to be administered in a clinical setting.
What can be done in the meantime except take the standard approved medications that cannot stop dementia, only delay some symptoms. As a Dementia Specialist, I work with families every week to try to sort out how best to care for someone with dementia in the home and survive all this awful disease brings with it. Families do not understand the behaviors that come with the stages of dementia. Everyone progresses through this differently. The very loving parent of the past becomes hostile and violent. The meek and mild spouse suddenly has the vocabulary a “sailor” would be proud of.
Dementia is a multifaceted disease and the tools we use to reverse this must be multifaceted too. Dementia starts 20-30 years before the symptoms show up. We already know that if we have someone in our family with dementia, we have a higher risk of developing this disease. I lost my sister to this disease about 10 years ago. I watched as it took her vibrance and reasoning ability. Aa a nurse, nearly 24 years of education and two master’s degrees, I could do nothing to stop the process of taking everything away from her and our family.
Others sought me out to help answer their questions, so the journey began to learn everything possible about this enemy I see every day so I became certified in dementia training, there are 14 different types of dementia. Alzheimer’s and dementia are not the same disease. What works for one will not work for all. The saying is “When you meet one person with dementia, you have met one person”. I see this disease rob families’ finances with the costs of inpatient care: ($7,000- $12,000 a month), caregivers who can no longer function normally and show signs of caregiver stress: increased illness, return to negative behaviors like smoking or use of alcohol, isolation, loss of savings, loss of friends because they do not know how to respond to the situation, so they just stay away.
Knowledge is power. You learn everything you possibly can. Polypharmacy is not the answer either. As we age, we are all subject to increasing risk of falls, most medications increase this risk. It all becomes confusing and frankly you become so worn out from the daily care you just become numb. You are suffering from sleep deprivation; it is hard to know what to do. You promised them you would never put them in a facility, but this disease to affecting two people not one. What if you do not have “Long Term Care Insurance”? How are you going to pay for care when your assets run out ($84,000- $144,000/yr.)?
Many elders do not have large families to help care for Mom and Dad. Many families are spread out all over the United States anchored with jobs, mortgages, friends, churches, and commitments. Finances always seem to be strained and having help come in can be extremely expensive IF you can find reliable, honest help. Nurses are in very short supply and can cost $40.00-$60,00/hour. Medicare does not pay for a nursing home except for the 120 days you have after a hospital stay to get you back in physical condition. Insurance companies and Medicare tightly control the options you have.
The Alzheimer’s Association does their best to support families with booklets, answer lines, “Lunch and Learn’s” and referral to credible professionals in the area. What about the “Living Will’s”? The signature is not valid after the diagnosis of dementia is made. Which attorney is best for your situation? There are more questions than answers. I advocate for everyone to have signed, notarized Advance Directives and DPOA on hand sooner than later. As a nursing professor I have taught Ethics and Legal Issues to hundreds of nursing students. The very best outcome is having the paperwork signed long before you need it. It takes such a load off families.
Kathy Adkins MHS,MSN/ED,RN, LNC, CDP, CADDCT, DIAS
50 years as a nurse caring for all ages, “Certified Dementia Specialist”
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