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Perseverance Asked July 2013

Dementia, difficulty swallowing, coughing... What is your experience with end of life and dementia?

Mom is 78, diagnosed with dementia, survivor of lung and brain cancer, amongst other ailments. Mom is on pureed foods and was taking atropine to minimize her saliva due to difficulty swallowing, causing respiratory problems. Atropine is not working. She also uses the nebulizer and oxygen as needed.

What can I expect with Mom? Hospice told me today that they can do one of two things at this point: suction out liquids every time they see her or morphine. I am all over sunctioning to help give some relief for her..... and then, of course, we'll use morphine as needed.

Hospice said, it could be weeks, months, or less... It is so hard to see Mom's life become this when she was such a vibrant and lively person... My siblings are not really involved and have proven to be unsafe discussing Mom's condition. They are in denial and rather self-centered. Mom is still in there, despite her non-communication, drooling and being checked out much of the time...

Today I asked her: Mom, is there anyone you want to talk to (thinking she'd say her sister or one of her kids)? She looked wide-eyed at me and said loudly: "God!" I smiled.

sdavisblue Jul 2013
Also, thank you for the allergy information. If my mom begins to exhibit problems with swallowing, this will be extremely helpful to look into. Being a caregiver truly makes me want to be the best person I can for my mom. Your wife has a wonderful partner and daughter as her caregivers.

sdavisblue Jul 2013
I know what you mean about not being ready to be an orphan, BUT, your mom gave you the best in her life and now you are doing the same for your mom. Isn't it something special that she is at peace with God at this time in her personal journey? It is a beautiful place to be for her now. I think we're all connected in some way in this earthly world, so even if we will eventually be "orphans" we still have those special people who love us or will in the future care about us right here in our lives. I also believe we'll see our loved ones after we transition.

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Perseverance Jul 2013
Thanks for your responses, everyone. I feel at such a loss. I confess I am not ready to be an orphan, but by the grace of God I will make it. I rejoice that she has made peace with God - as she rejected him her entire life until this past year... and it has been a beautiful transformation. Really miraculous. Blessings to each of you and your loved ones.

bobstitt1942 Jul 2013
This is a difficult question to answer because it seems you have a unique situation. Let me just tell you what I have done.
My wife has had cortical basal degeneration for almost 10 years. She lost the use of speech probably 5 or 6 years ago. I puree a lot of her foods now.
I think her choking comes mostly when she is dehydrated so I try to keep her well hydrated. Sounds like you are trying to do something just the opposite and get the liquid out of her body. The reason I have a problem with hydration is because sometimes after a couple ounces given with sips, she will spit everything back up. And if I give her too many sips at a time and don't watch until she swallows, it all rows back out when she goes to take another sip. It is kind of like she forgets to swallow it.
My daughter suggested maybe the drooling and blowback might be from hayfever. I found this product called Allergy Reprieve Herbal Extract in the grocery store (sunbowfarm) and I asked her doctor to check it out. The doc said she did not think anything in it would harm her so I have been giving her 5 or 6 drops with each of her meals and it seems to help.
One of the things I noticed early on was that different foods seemed to affect Judy. I went to an allergist and he suggested I keep track of things she eats and look for changes about 18 hours later and that helped tremendously. My daughter set up a spreadsheet on the computer for me to keep track of what went in and what happened. You might check with an allergist in your area. The two main things I found was milk and soy. There are others.
As far as end of life, I think most of the time I have several years left in spite of the 4 - 8 suggested.
Hope this helps.

amyrup Jul 2013
I love this story. I know it is hard to see your mom this way, but to know she wants to talk to GOD should bring you some comfort. My mom and I have been talking about her ending lately and she is very faithful and knows where she will be when she is gone. It brings me comfort!

sdavisblue Jul 2013
Your mom sounds beautiful and I empathize with you and her. My mom has Alz dementia with no other ailments, but she tries so hard to fight through the awful confusion. She told me she is done and I knew she meant she was ready to see God. I can only offer you the only advice I can think of and that is to pray and try to surround you mom with people who have made her smile in the past, people like you. God bless.

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