Editor's Note: I've been following the challenge my friend is facing as he and his wife, a nurse, care at home for his wife's mom who is in her 90s, suffering from dementia, and nearing the end of her life. I read a column recently by a woman who described the different stages of dementia that challenge home care givers. Home care, she said, is "not for the faint of heart!" That is certainly obvious from my friend's emails.
Not everyone has the capacity to do what my friend and his wife are doing. Some do it for a time until the physical challenges are greater than they can handle, like another friend whose adult daughter had Huntington's disease. There came a time when her aging parents, even with a hydraulic lift, could no longer care for her at home. But what an example of heroism to do it as long as possible! If you want to read the entire story of my friend's journey go to these pages:
My friend sent another post yesterday and I offer this chapter in the on-going story of caring with someone in advanced dementia. Please pray for my friend, his wife, and his wife's mother as they go through this Lenten calvary. And also pray for all those caring for loved ones at home whether with dementia or serious illnesses and physical or mental challenges. They show us love in action!
End Stages Dementia is definitely a challenge to my Catholic Faith. Excessive measures gets redefined to not having intravenous feeding and hydration but having our personal care of directly feeding and hydrating until which time Mom can no longer swallow or breath on her own."Excessive Means" is now interpreted as using feeding tubes, but also choosing NOT to employ those measures which might hasten death. Which is BEST... being heavily sedated to permit intravenous feeding or being conscious and mildly sedated while being cared for every minute of your day by your loving family?
Mom's brain is physically shrinking in size and the synapses do not connect well making her autonomic nervous system less-functional. Her perception of objects is highly distorted most times, seeing things that aren't there and not seeing things that are.
If Mom were in the hospital they would sedate her to keep her less mobile, quiet, keep her from crying; most of which we do not do at home.
It's very hard to hear someone you LOVE crying and realize that is now a normal function of her life for as long as that might be; and her dementia is something that will happen without rhyme or reason until she passes.
We have been prescribed necessary medications to use as needed -- when needed. We believe we keep Mom more comfortable at home. We feed her as well as she desires, try to make her smile, touch her often telling her how much we love her. We boof-up her hair, smooth coconut oil onto her hands, arms and face as she smiles and possibly envisions being pampered professionally, but just us loving her, caring for her.We have video cameras about the interior of our home which are very useful. In the earlier stages we could see possible hazardous obstacles and remove them hopefully before she could get hurt and doing whatever necessary to keep her safe.
Early on whenever Mom fell, we learned a bit more about her condition as it progressed faster than we or the medical staff expected.
Mom's brain is physically shrinking and the synapses are not working as they should which causes problems similar to an old computer being crammed with more data than it can handle. Being updated with unknown new technology it can't fathom how to handle it. So much data, so many memories crowded into an ever shrinking storage area with no connections between the memories -- all jumbled, super compacted into a confusing and delirious mass of demented thought. Think of your brain over-stuffed with everything you've experienced, seen, heard, read, for over 90+ years. Think of your brain totally confused. Think of your brain having very brief moments of clarity. Think of your brain remembering about your total confusion. Who deserves this disease?There are many methods of handling your loved ones in this position. You could very easily let others take care of them for you, putting them in a nursing home and visiting on an as-needed basis. Or loving them on an on-going basis, caring for their every need, every want, hearing every cry, every moan and groan, every scream at every unimaginable undesired minute of everyday until....LOVE makes the difference.I thank God for giving me this opportunity to LOVE.
It's a long, tough journey. We did it. The rewards are so many, peace of mind, mostly. You get the rest of your life to be at peace with your decisions about her. That's huge. It's hard enough losing them, but losing them and feeling you could have done more, ouch. Because you'll miss her a zillion times. Consider bed alarms, that attach to her pajamas, and will alert you if she gets out of bed. People with dementia understand gestures and things they see, facial expressions, etc., far more than language. Old music, music they liked, gets through and they often sing the lyrics even if they can't speak. They remember old photos of people from their childhood or youth, or your baby years. They love babies and pets, usually, until things are far gone. But gentle touch, a kiss, a hug, these are what you want them surrounded with.
Keep the confusion down, many people with dementia "sundown", meaning they get anxious and agitated at sunset. No one knows why. Watch them, if there is too much talking, they can get overwhelmed and start to get upset. Talking to them is better if just one person talks at a time, and being with them is best if it is taking a photo album, going over it with them, talking about people and things they know. They can't do it enough.
Don't correct people with dementia all the time, when they say things that are wrong, or talk about loved ones no longer there. It is cruel to keep reminding them that person is gone, etc. Let it go. What gives them comfort, let them have. Keep them busy if they can do any craft or activity, no matter how small. Folding a towel or shining something. Give them a tea pot and a rag, they may shine it and feel part of things. Find calming things on TV, there are so many relaxing videos on You Tube. Animal videos, nature videos (minus the graphic stuff) children videos, they may like these. Make sure anyone who works with them speaks their language.
When things get to the end point, actually six months before, consider calling in hospice. They can give you help, and you'll cherish it. Families tend to get fractured at times like these. This one doesn't do enough, that one gets pushy, it's a big adjustment and families often squabble just when you need them the most. Everybody can help in some way, however small. You will usually find it falls to one or two and the rest do a lot less. Just how it is.
You have the right idea, whatever she wants, food and drink as she wants. Keep her diet fairly neutral, soft consistency. Her body knows when it's time, and to force liquids or food on someone who's body is shutting down can make things worse for them. Don't be afraid to ask for pain meds for them if you think they are hurting. We kept Mom to the end but I would have had her admitted for pain control. If you watch their face you can tell when they are in pain. There are meds that can help with dementia of course, as well. You don't want her in great pain at the end, or gasping for air. There is not a thing wrong with finding a great facility where that can be avoided and you get a bit of a break at the end. You'll be there with her. Don't forget the blessings she can get from a priest as well.
I hope something here helps on your journey of love. She must have been a good mother or she wouldn't be cared for to this degree. It is now when her children have a chance to repay her the love she gave them. And you can keep the peace from that for the rest of your life. God be with her and you.
Thank you, Kathleen for sharing this lovely witness and all the suggestions. I'm sure anyone facing the challenges who reads it will benefit. God bless you!
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