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Dear Dementia: You and I haven't known each other very long but I hate you. You came uninvited into my life, into the life of my husband and into my marriage and turned everything upside down. You are trying to take the best person I've ever known away from me. I see his dry wit and humor, the way he can make me show my silly side, the way he puts "gentle" into the word gentleman slowly fading. You are taking all of that away from me and I resent it. I am angry and the person I would normally tell all this to is the one you are affecting the most. That makes me even angrier. When you show yoursel and make him act in ways that he would never do under normal circumstances, I try to be calm and understanding. You make me feel guilty when in moments of weakness I say to myself that I never signed up for this. Feeling like that makes me hate you even more.
So Dementia, you are on notice that I won't let you win. You are going to take my Steve away from me. I know that I can't win that fight. However, you will not dictate how I respond to you. I will continue to love him and care for him as I always have. I will decide, not you, when I can't do that anymore. You are taking my husband but I won't give you me as well. You are what you are but I decide on how I will respond to you. Be warned that I am going to fight you for him with every breath I have for as long as he lives. He will always be mine no matter how much you take away.
Sad but sweet letter. I'm so so sorry this is happening to you and your beloved.
The most difficult thing for the loved ones to deal with, in my opinion, is the changed relationship with the person who has dementia. The changed dynamics and roles. To me, that's harder than the physical and logistical side of it all.
I don't have any advice other than to pray for wisdom and guidance and loving kindness.
OK, no lie - I put together a "war room" during my MIL's long painful descent into dementia and Parkinson's. I cleaned out the closet beneath the stairs, put a little table and lamp and chair in there. I put a sort of little shrine in there. Now, I'm a Christian so I put a crucifix, a little incense burner, a bible and a notepad on the table, and then printed off a ton of pictures of my family and anyone I wanted to pray for, and also printed off favorite verses. I tacked all of those onto the wall in front of the table and chair. It is very helpful for me to retreat into that small, sacred space and just sit there, clear my head, look at each picture of each loved one, and pray - or if that's too much effort, I just read the verses as I look at each dear face.
It has been really helpful. I highly recommend it!
It is not fair that with this horrible disease what all they have to re- live day after day after day!
The loss of loved ones, loss of total memory, and being stuck inside their body like a lion pacing back and forth that cant get out.
I often wonder what goes through their mind in a days time? They often want to go home. so scared of what is happening around them. Heart breaking, it is!
In the recent issue of The Economist, there was an article Grey Zone/As Cases of Dementia Rise Japan Gropes For New Ways To Deal With Them, as there's now 2.3 million dementia cases over there now, and they're ill equipped to deal with it, the government as well as families.
Last year, 10,000 dementia sufferers went missing in Japan, many turned up dead, or not at all. Some walked into the paths of trains, for which their families may suffer a posthumous indignity, a bill for the cost of the accident. One man who lost his father this way recalls staring in disbelief at an itemized invoice from the railway company for $65,215! Ouch!
Many family members are at their wits end tying to take care of a parent with dementia, with some considering suicide, and last year police recorded 44 cases of murder or attempted murder.
It doesn't help matters that the population is shrinking in Japan, and they stubbornly refuse to allow immigrants to alleviate some of the associated problems. With a chronic shortage of nurses, the low pay for nursing, the Filipino nurses won't be going there, instead continue on with their journey to higher pay in the U.S.
But, help is one the way, slowly but surely, with the creation of continual care retirement communities, but it remains to be seen if the government or the family will end up paying for this.
OP, Thank you for writing that letter. It's a horrible disease.
My Mom seems content in her world for now, but I worry about the future.
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