Some days there is lucidity. Some days it’s the same question 30 times in the same hour. Most days it flip-flops from lucidity to confusion, to anger, to self-doubt, to talk of suicide and ending this madness, with the same questions being asked over and over again.
Did she not hear me? Do I need to raise my voice? Do I need to physically show her what I’m talking about instead of trying to explain? Do I need to write this down? Should I just do this myself? Does it even matter if she’s just going to forget? Why am I getting yelled at? How do I stop this? Why do I even bother?
Patience is needed and necessary. There is never enough. There is a lot of walking away and thinking it over. Holding hands. Deep breaths. Tears. Then, wash, rinse, repeat. There is no answer, but because there is love you make it through the day. The sun rises again and you hope for a good day. So really dealing with someone who has lost their mind should be just like every other day. It starts with light and is filled patience and love.
My dad worked with the Alzheimer's Association for most of my life. Just from being in the periphery I have a glimpse of how difficult dealing with dementia is for caregivers. I hope that you and your whole family are reaching out for the various support services that are available. Email me if you need a place to start.
ReplyDeleteI have no experience dealing with this, but I offer myself as someone to help you decompress and get away from it all every once in a while. I love you.
ReplyDeleteIt's a tough thing. I've been through this with my own grandmother, and during the 2 years I worked with elderly residents.
ReplyDeleteA couple tips, if that's okay...
The biggest thing is gentleness. As the left-brain functions decrease, a person become more sensitive to nonverbal communication, voice tone, and energy. If you put yourself in a calm frame of mind, use a really gentle tone, sit close to her level and use gentle nonverbal communication, that'll do wonders in getting through to her at least at any given moment. Of course she'll forget, but it's really about getting through the moments, moment-to-moment. It's sort of an exercise in mindfulness... if you can allow her to stay in the present moment (and not expect her to remember any particular things from other moments) then it sort of gets easier, and it can also be an opportunity to practice living in the moment, which is good by itself.
On a similar note... when I have worked with Alzheimer's patients, I have found it helps if I try to view them as their eternal, ongoing spirit that cannot be effected by memory loss, then it's easier to be patient, and I also think it helps the person feel safer, a bit, because there aren't unreachable expectations on them. Dementia doesn't take away the entire person, it takes away access to parts of the brain. The spirit is intact. In our culture, we value the left speaking and logic part of the brain so much, but it isn't all that we are. We are so much more. Even in advanced dementia, the Spirit remains and can be sensed, and connected to, in my personal opinion.
Alzheimer's and related diseases are truly some of the wickedest illnesses on the face of the planet. I'm so sorry you are experiencing that in your family. I have no experience with it and don't have anything helpful to offer here. Only my prayer that you and your family are given every thing you need to push through.
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David
Thanks everyone! Your support is very appreciated. Ephiphany, I'm actually working on another post that addresses you second post.
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