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Alzheimer's Disease & Dementia Message Board

It is hard to figure out what to do

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Old 09-29-2014, 10:51 PM   #1
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It is hard to figure out what to do

It has been a long while since I posted here. As I said before, my wife has Alzheimerís Dementia. I gauge her level and stage to be between 6 and 7, Iím never sure what to call her disease and I guess it really doesnít matter, as the outcome will be the same.
She was diagnosed in 2004 by a doctor who did some verbal testing and remarked there were going to be some issues down the road. She was ďofficiallyĒ diagnosed in 2008 by a neurologist after some verbal testing and a MRI. Since then she has seen her PCP for most everything with the exception of a trip to a neurologist about 3 years ago. His parting message was ďfeel free to come back any time though I donít think there is much I can doĒ. He did prescribe namenda and my wife was already taking aricept. Something I should say is my wife resists all pills all the time. I was fairly successful with the aricept but never able to get the namenda going on a regular basis and so we stopped trying to use it. She has resisted taking every pill she has been given to the point that the only two she is currently taking are prozac and seroquel and those are a struggle everyday, but the doctor and I judged them to be the most necessary.
Recently she started refusing to drink water or juice. Hence no fluid intake no urine output. This has caused me some concern and after reading many opinions and papers I thought it could be an UTI so I took her to the doctor and she was negative for an UTI. So since the doctor was an urgent care doctor she wasnít really ready to do anything other than treat her symptoms, which were pretty much nothing.
So what do I do now? Take her back to her PCP, for what?
Iím still her only caregiver and as such havenít anybody to ask for advice. I have contacted several agencies of differing stripes and havenít found one that was worth the time it would take. Time I donít have.
I know this is pretty rambling but I think there is a question in there if anybody would care to respond. Thank you kindly.

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Old 09-30-2014, 12:59 AM   #2
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Re: It is hard to figure out what to do

I do remember you from before As for what to call it... Alzheimer's. Dementia is basically a symptom. It is cognitive decline the interferes with daily living. Alzheimer's is the disease that is causing the symptom of dementia. But you are right, when you are in the middle of care giving it's unimportant what you call it.

My best guess is that Mom is beginning to have swallowing problems. How does she do with foods?

Pills can be a problem. They are big and unfamiliar. Check with your pharmacist and see if the medications (or an alternative) are available in Patch form. I believe the Prozac is but not the Seroquel. If they are not, then ask if they can be crushed. Crush them to a fine powder and mix them with Jam. Many try applesauce or pudding but these don't work as well as Jam. Pills are normally bitter when crushed and that taste will come through because the last taste sensation someone with dementia has is the taste of bitter. Jam is super sweet and should cover the taste. It also has lumps naturally so any lumps will not be noticed. If she is still eating solid foods you can even spread a lot of it on a small piece of soft bread. Introduce it as a sweet treat and not pill time.

Liquids may be the first swallowing problem you notice. Amazingly liquids are the most difficult to swallow.... along with large pills. There is a product called "Thick It" that can be added to liquids to thicken them. You want them to be the consistency of honey or nectar. This makes them easier to swallow. It will work in any liquid. It is worth a try. Also if the medications she is on comes in liquid form, and she can tolerate the thickened liquids, you can also thicken her medication and give it that way.

There does come a time when those living with Alzheimer's will lose their ability to swallow. Thickening their liquids and pureeing foods will help for a while but eventually they will forget how to swallow and there is nothing you can do about this.

At this point in my parents care, I ask the PCP to refer them to Hospice Care. They were amazing at helping me understand what was happening and how best to care for Mom/Dad. Nurses, even doctor's, can come to your house and give you guidance. You can also receive the services of a care giver and other assistance you may need. They will supply you will incontinent supplies and some medication. If she needs a hospital bed, wheel chair, or lift, they can also supply those. I was most grateful for the Social Worker who was there for me to talk to. They were my angels. It might be something you would want to look into.

The lack of information from the doctors related to all types of dementia is sad. They honestly do not know what to tell you. They run a few test, have you come back for a few more test, give you a diagnosis and a prescription, and then bid you farewell. You have done the first step which is research anything you can find on the disease. Read read read! This is probably the hardest "on the job training" you will ever do. Then you have done half of the second step.

It is truly from each other that we learn how to deal with this disease.

Hope something here has been helpful.... and ask any more questions you might have

Love, deb

Last edited by Administrator; 10-09-2014 at 07:31 AM.

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Old 10-08-2014, 04:23 AM   #3
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Re: It is hard to figure out what to do

Hope you have called her PCP if she is still not drinking and get their advice.

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Old 10-13-2014, 11:33 PM   #4
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Re: It is hard to figure out what to do

My husband is starting to have difficulty swallowing liquids, too. Drinking with a straw seems to help. I also buy a lot of cucumbers and watermelon to give him everyday to supplement the low liquid intake.

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