Many, if not most, think that death is the worst thing that can happen to them or to someone they love. But there are other things that make death almost seem like a relief from the agonies of living. Dementia Awareness Week was May 18th to May 24th. I did not even know about it until a former Special Forces associate posted the following on Facebook. He wrote the introduction, but the rest is in multiple places on the internet in various forms.
Another friend’s mother has dementia, and the relationship became so argumentative that one day she came home from work and her mother had moved out of the house; a house bought specifically for the needs of her aging mother.
Yet a third friend told me that their hardest day was the day their parent failed to recognize them. I passed that word along and it was a shock to my other friend who thought the arguments and fights were already a bad part of her life.
It is said that when you care for someone with dementia, you lose them more and more every day. When they get the diagnosis, when they go through various stages, when they need treatment and when they pass away.
My Special Forces friend wrote, “Hardest and most heartbreaking thing I’ve ever dealt with. Watching dementia take my Dad was brutal. If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.”
1. Every time you enter the room, announce yourself. “Hi mom – it’s …” NEVER ask- Do you know who I am??? That causes anxiety.
2. I want my friends and family to embrace my reality.
3. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
4. Don’t argue with me about what is true for me versus what is true for you.
5. If I am not sure who you are, do not take it personally. My timeline is confusing to me.
6. If I can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
7. If I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
8. I don’t want to be treated like a child. Talk to me like the adult that I am.
9. I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
10. Ask me to tell you a story from my past.
11. If I become agitated, take the time to figure out what is bothering me.
12. Treat me the way that you would want to be treated.
13. Make sure that there are plenty of snacks for me in the house. Even now if I don’t eat, I get angry, and if I have dementia, I may have trouble explaining what I need.
14. Don’t talk about me as if I’m not in the room.
15. Don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you.
16. If I live in a dementia care community, please visit me often.
17. Don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
18. Make sure I always have my favorite music playing within earshot.
19. I like to pick up items and carry them around, help me return those items to their original place.
20. Don’t exclude me from parties and family gatherings.
21. I still like receiving hugs or handshakes.
22. Remember that I am still the person you know and love.”
There will be those who do not read this article because as soon as they read the word ‘dementia,’ they just turned the page because dementia has not touched them.
It is possible that someone you know has dementia now. Possibly so early in the process it has not been medically diagnosed…yet. If you don’t know someone who has dementia, chances are you will at some time in your life as you grow older.
The Mayo Clinic states that the terms ‘dementia’ and ‘Alzheimer’s’ are often used interchangeably, but they actually have different meanings. Dementia is not a specific disease. It’s an umbrella term that describes a wide range of symptoms. These symptoms affect people’s ability to perform everyday activities on their own. Common symptoms of dementia include:
• A decline in memory
• Changes in thinking skills
• Poor judgment and reasoning skills
• Decreased focus and attention
• Changes in language
• Changes in behavior
Alzheimer’s disease is the most common type of dementia, but it’s not the only one. There are many different types and causes of dementia, including:
• Lewy body dementia
• Frontotemporal dementia
• Vascular dementia
• Limbic-predominant age-related TDP-43 encephalopathy
• Chronic traumatic encephalopathy
• Parkinson’s disease dementia
• Creutzfeldt-Jakob disease
• Huntington’s disease
• Mixed dementia
While dementia is a general term, Alzheimer’s disease is a specific brain disease. It is marked by symptoms of dementia that gradually get worse over time. Alzheimer’s disease first affects the part of the brain associated with learning, so early symptoms often include changes in memory, thinking, and reasoning skills. As the disease progresses, symptoms become more severe and include confusion, changes in behavior and other challenges.
There is a reason dementia is called “the longest goodbye “. As the brain slowly dies, the afflicted change physically and mentally to the stage where they eventually forget who their loved ones are. Many times, they will regress to the point of just lying in bed, not moving, and not eating or drinking.
Danny Leo Green, Coroner, Cedar County
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