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We are in and out of the hospital with multiple issues mostly stemming from the lack of wanting to drink. UTIs, pneumonia, dehydration, falls from dehydration, low blood pressure issues stemming from dehydration.
The assisted living home will encourage fluids but they don’t sit there to see that they are not being fully used. There’s no explaining the importance of hydration because there are a million excuses as to why she has more than enough (possibly drinks 2-8 ounces a day!) I understand this is her disease making things difficult but does anyone else have any experience with this? Any advice appreciated!

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At some point, you have to come to terms with the fact that this is fatal and there is no getting better. Quality vs. quantity. You can't make her drink but you can continue to go to the ER for them to pump her back up. For what? To go through it all over again? I would consider Hospice care at this point. I say this because the same thing would happen with my mother. We'd end up in the ER and spend 2 days in the hospital, which just created more confusion and discomfort for my mom. The last time she went, I had to ask myself who was I helping? I was only ensuring she had more suffering. The kindest thing I could do for her was to let nature takes its course and do whatever I could to keep her comfortable. Hospice was called and there were no more trips to the hospital.
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Isthisrealyreal Feb 2020
That is the perfect answer to this dreadful disease.

Careblazer, I am sorry that you are facing these difficult choices. I think that tiredandweary nailed the reality of the situation perfectly.
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This doesn't mean its the end stage of life. This can happen in the early stages. Their brain no longer tells the body that its hungry or thirsty. This is how Dementia is found in some. Its not not wanting to drink its not knowing they need to drink. The AL should be going around every so often with water for residents. They should make sure the residents are drinking at every meal.

Now there does come a time when not drinking or eating means the body is shutting down. They no longer can swallow. Forcing them to do either does more harm than good. This is the "end stage". This is where Hospice can be called in. They will keep the person comfortable.

And they don't decide, they can no longer do that. The brain is dying and losing controll of the body.
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Careblazer310 Feb 2020
Thank you. I understand this. She is not end stage, I agree. I also know she is not purposefully deciding not to drink. So many medical professionals and family have spoken to her about this. She still doesn’t drink so I know it is part of her dimentia.
I wanted to know if anyone has advice for how to deal with this since it is causing a lot of medical issues for her.
we are concerned that it will worsen.
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Is it possible to encourage eating high fluid items.
Popsicle's, jello, pudding, (keep in mind none of these are good if the food has to be thickened.)
Meals like soups are another great way to increase fluids.
Fruits
Between meal shakes like Boost, Ensure or other nutrition drinks might also help.

Is it possible that the AL is not able to monitor enough and the better choice would be Memory Care?
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Careblazer310 Feb 2020
Thank you so much for your reply. Yes, we try our best with soup and high water content foods but she is not really eating well anymore either. She won’t drink Ensure or Boost because she thinks it is for older people. She has her ideas about things which are hard to break through.
I agree that memory care is probably a better option for her at this point but it’s convincing her children to make that move for her that’s stalling the process. I hope they see very soon that it is the safest option.
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I agree memory care would be the best placement for her. Another option to consider is palliative care only; no curative measures or drugs to be given. That would mean no more diagnostic tests, blood draws, etc, and she'd go off stations and other meds that try to cure disease. She'd still get treatment for broken bones & illness. While she's talking, someone needs to read Dr Atul Gawande L's book, Being Mortal, and lead her through the question of quality of life. It may be too late, but the family needs to consider this. If it were my mthr, I would not allow the ER to give her fluids but respect her action of not drinking and let her pass on her timetable.
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I don't think it matters how 'advanced' your mother's Alzheimer's is when you ask for a hospice evaluation.............it's about how many times she's schlepping back & forth to the hospital where they are rehydrating her dehydrated body. For what purpose? To drag out a terminal disease and extend her life even further??? At some point, the interventions have to stop, you know? I'm almost there with my mother who's only at the 'moderate' stage of dementia. She has other health issues in place (CHF, AFIB) that make the whole scenario a nightmare to deal with, and all of her issues just make everyone's quality of life non-existent.

So. The next time she goes to the ER for whatever issue is happening, that is when I am asking for a hospice evaluation. So we can end the insanity of the hospitals, the rehabs, the tests, all of it. She deserves comfort care at this stage of her life (93) and disease. She also refuses to drink liquid b/c it 'makes her pee' and she's incontinent on top of everything else.

Leave your loved one alone, get a hospice evaluation the next time she's off to the ER, and let God take over. When it's her time to go, she'll go. Your job is to see that she's as comfortable as possible during the journey.
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Tiredandweary Feb 2020
Totally agree. At some point, you have to decide who is benefitting from keeping someone living through this awful disease that has no cure and no positive outcome. It sure isn't the person going through it or the families that have to watch the process. The Healthcare Industry was making money off of my mother's suffering. To the tune of over $100,000.00 for one year, which was just my mother's out of pocket costs. I have no clue what it cost taxpayers for the medicare coverage when it came to the medical bills. Was keeping her alive at all costs worth it? Not in her condition. If we could have fixed her and she gone back to living a normal, happy, healthy life, sure! We were just spending a fortune to ensure she couldn't die in peace after 91 years. We faced reality and made a decision to do the kind thing. I know she would have thanked me for doing so. I can't imagine anyone wanting to live like she did her last year.
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My own experience is to have a jug that contains the daily ‘ration’, and pour all her fluids from this. Then you, and she, and any other carers can see how much she is actually drinking. Give her lots of positive reinforcement if she is getting through the jug. That is of course unless you are sure that it would be better if her body did close down for end of life.
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Are there swallowing difficulties?

My Mother will now only drink milk & sometimes juice (nectar thickness). Anything thinner causes coughing & choking which is awful for her (& awful to watch).

Jelly & icecream seem to be very popular with many who won't drink although these require effort (spoon, coordination & concentration). Also cordial instead of water. Sorry I haven't found an answer to this either.
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I do my mom suffers from Dementia and she is not drinking enough water so what I do is when she finishes her water I have her put them on the counter then I call her and ask her "how many empty bottles are on the counter" so that I can keep track of it also she has a Home health aide which helps out a great deal.
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Careblazer310, has anyone done a swallowing test on your Mom? My mother ended up in the hospital a couple of times with pneumonia, or what appeared to be pneumonia. After being released from the hospital she was placed in rehab for up to 20 days so that certain specialists could help her regain her strength, moderate and track her swallowing and intake. Discovered Mom was aspirating due to drinking from straws. Took those straws away and Mom recovered rather quickly and was able to return to her assisted living. Now, water is something my Mom will NOT drink for some strange reason, but she loves soda pop so we keep her fully supplied with that. I did try sending the flavor enhancers with the water bottles but she didn't care for that either. Personal opinion; after moving my Mom to a nursing home last July, she has become an entirely new person in a great way. Found out the hard way the assisted living had her on way too many drugs for an in general diagnoses. Turns out Mom has Parkinson's with a bit of dementia which changed the treatment meds considerably. My mom can actually talk now and is constantly on the "go."
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Careblazer310 Feb 2020
Great for your Mom! Im
glad she is happier and thriving where she is. My MIL just had pneumonia, UTI and a fall so she was hospitalized then send for 2 weeks to a rehab hospital. They did not see any swallow issues but I will follow up with her in house therapists at AL in case they see this as an issue.
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Do a simple test. Gently pinch dkin on yhe bsck of her hand & pull upwards 1/4-1/2 inch.
If so taught you can't easily pull it, she is fine. If bounces back to smooth immediately, she is fine.
If it's slow to rebound to smooth, she is dehydrated.

The first few times do this about 15-30 min after she has had a bunch of fluids...like with taking her medsor after a glass of her favorite drink... lemonade? Herb Tea? Decaf tea or coffee?
If the first couple of tests are when she is hydrated, confirming her opinion, she won't be resistant to the test. If it is positive..low on fluids, pick a couple of things she likes to drink and ask which she would like. You don't even have to mention the test was positive. Just offer or make a favorite.

Remember caffeine & alcohol dehydrate. So stock decaf/ herbal teas or flavored decaf coffee...her preferred brand also in decafe. If you have an empty coffee can, switch the container, but put a mark on it in case she has someone else get some for her.

Another note, Gatorade is high in salt, so water it down. I now drink 50/50 or even only 30% Gatorade & the rest water. She will get the electrolytes but less salt.

Sea Salt & low salt snacks in moderation will help trigger her thirst. No one wants to be reminded that their body is fsiling them...no matter what the age.
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Tiredandweary Feb 2020
The skin test is not a good indication in the elderly due to loss of elasticity in their skin. As with many other things in the elderly, the signs of dehydration are sometimes masked. The main thing to look for is more confusion or falls. Blood pressure is also lower and urine is more concentrated.
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Offer 4 ounces of water several times a day by placing the glass in there hand, and slowly guide the glass/cup to there mouth always remind them to drink. You have to be very patience.
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My 95 yr old Dad hardly drinks any water.

But he will drink milk and juice and I don't give him coffee, alcohol, sodas.

Find things that he likes to drink because even tho it's not water, it will hydrate

Also, I have a bottle of water sitting beside my Dad 24 7 and try unscrewing the lid and tell him to take a sip. Do this as often as you walk by him.
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Have a G- tube
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Hello,Yes,in my line of duty as a HHA since the 1980,s I have seen it till this day.Not only with the Alzheimer's population but even with everyone in my path. It's thru lots of Patience that can be achieved.
The way I do it with my client right now with dementia .In the morning she likes coffee with every Breakfast.I bring one cup with the coffee.Once she finishes I bring her 6 morning pills to the table with water ...IN..the same cup she drinks coffee. WHY?...with clients with brain issues we need First see their necessities. Then make it easy on them.My client DO NOT LIKE to drink water.But with the cup she is comfortable to do so it's with the coffee one. WE BOUGHT 12 of the same cup.When they see different items around the table or different dishes they get confused.So when breakfast is done we start with her meds.Our goal in my 12 hour shift from 9am to 9pm it's...minimum 8 cups. During each hour I bring to her half cup of water.When the first round finishes...THE NEGOTIATION START.
I will bring the Newspaper...and together we start going thru the news paper.I tell her ....I'm bringing a cup of water for me and one for you because we are going to be sitting for long and the kidney needs to work while we are reading.WE start reading and talking and drinking water by11AM she and I had one cup of coffee and two cups of water.Then by close to 1pm I walk her to the bathroom the she finishes and I invite her to walk to the building elevators like a 12 minute walk in total. When we come back another cup of water the same cup...and as days progresses I do my best to assist with such important task.NOT only for the client but for all around them.The aide or visitors can also bring their water.WHY if they see only them have to drink water they might think we are going to harm them.When she needs to drink water...it be nice someone sits with her and also drink water to bring her some kind of security that water it's not POISON.Their brains doesn't funtinon the way we would like for them to funtinon.REMEMBER is their brain and they controle it.We just work around it.It will take a lots of negotiation but it's duable.Little sips on a nice Cup that she can feel comfortable like with beautiful roses of maybe animal print.My client loves Cat's .PLEASE let us know how it's going.Wish you all a very nice journey.Good luck.
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Careblazer310 Feb 2020
Thank you so much!!!!
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In my mother's facility, if people are having difficulty swallowing they get thickened fluids. This may not be the situation of the person you are caring for, but it might be something to check.
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We deal with this every day. Our mom too has been in and out with all the symptoms your mom has. It is one of the hardest issues to deal with. She is getting pedialyte now as well as fruit, jello and whatever has fluid. Bone broth too. Nothing easy about this disease. A new roadblock every day.
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If you are visiting her and sit there with her you could try swabing her mouth with some fresh cool water around inside her mouth dipping the pink spunky mouth swabs in cool water around in her mouth so she can suck the moisture from the water out of the spunky pink mouth swabs that you can get from the pharmacy, ask the pharmacist behind the counter about the pink mouth swabs. They can be used to clean her mouth and or to jousting her mouth with the water. Try crushed ice if she'll eat it. Any kind of moisture is better than no moisture. But I wouldn't let her do it herself if she has dementia or Alzheimer's disease because you don't want her to stick the plastic stick down her throat or get choked on it. But if you take the swab and dip it in cool water and you swab her mouth like you're cleaning her mouth or moisturizing her lips she may suck the water from it and keep doing it or offer her crushed ice. But you sit there with her and. do it for her. Give her lot's of attention and Love and encouragement. Talk to her Primary Care Doctor to make sure there's no risk of aspiration before you do it though. Alzheimer's is a dreadful disease! My Daddy had it and My Aunt. It's not there fault. They can't help it. One moment they may or not remember something. I would not leave those laying around for her to forget what they're for or get choked on it trying to do it herself. But if you do it for her or tell her it's to moisting her lips she may suck the water out of the sponge while You hold it for her. You may try Apple sauce or the thicknened tea or juices or shakes or milk. Even cherry Italian Icies Try Ensure Chocolate or vanilla or strawberry shakes for Nourishment. Encourage her like it's a treat. Assist her with it. Hope this helps!
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My dad put himself in the hospital a few times just from being so dehydrated he could barely function, but got very interested in sodas toward the end. We brought him a Sprite within a few weeks of his death, and he was absolutely amazed! Like he had never had anything so delicious. It was adorable. So maybe you can find some beverages that are more exciting than others? Water might be a tough sell, but try different things and maybe you'll hit on a winner.
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It may be swallowing problems with thin liquids.

Might try Nestle's Instant Breakfast in whole milk. Whole milk is twice the viscosity of water and powder will also make it more dense as well as sweet. They make Boost. So it comes in chocolate, vanilla, and strawberry.

I would give it to him with a drinking straw so he can control the flow.
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I have to repeat the case for putting in a G-tube for nutrition and hydration and medication.
My wife went thru stages of regaining body functions coming back from a stroke with 4 months in rehabilitation. The G-tube did solve all the problems of not being able to swallow anything.
Now that she is at home under my care, swallowing pill has become a real issue that I am thinking of having the G-tube inserted if the pill-gate gets worse.(some pills cannot be crushed and mixed with yogurt)
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Davenport Feb 2020
God bless you and good luck!
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Every person needs 2 liters (8 8 ounce glasses full) of non-caffeinated fluids a day. Water can be boring to drink and some folks have difficulty with liquids. Ideas to increase hydration: jello, popsicles, broth-based soups, watermelon, applesauce, juice, flavored drops to add to water (like Mio)… Also consider drinks that boost nutrition: Ensure, Boost, Glucerna... Making meals a social occasion helps everybody to eat and drink more. Plan a schedule of snacks with drinks between meals to increase nutrition and fluids: something when reading the news, something during games or social activities, something during TV or movies, and something before bed.
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I have the same problem with my LO. They seem to be always dehydrated and will faint sometimes. There is no easy answer to get the patient to drink. You have to try a variety of different drinks. I have found that grapes and apples help. Also, different fruit drinks. Also, ensure or boost, and crystal light.
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You have to be around to remind them to drink. Eventually they will need thickened liquids. Then it will come down to either a feeding tube, or hospice and let them die of dehydration (can take 2 weeks to die that way even with hospice). They forget how to drink.

2 to 8 ounces a day will kill her kidneys not to mention infections, constipation and UTIs.
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My 88 year old mom was in/out of hospital with dehydration a few times. She too refused to drink water to help. We made her slushees and tried some smoothies which she was crazy about. At first she declined them so I left it and said, “It’s ok if you only want a sip, you decide.” She’d try it and ended up loving it. She later enjoyed protein shakes with a scoop of ice cream and macro greens powder. When I quit forcing it on her she came around. Not sure if it’ll work for you, but might be worth a try?
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Davenport Feb 2020
Good for you for being resourceful, and congratulations on being so lucky that you and your mom have a solution!
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Doctor says Mother has age related decline not early dementia. Mother only drinks Dr. Pepper, coffee, or sweet tea. Time and again I explain it's not the same as drinking water and that is why she tends to choke when she eats. She seems to agree, but her excuse for not drinking water is that it makes her have to go to the bathroom. I'm certain not consuming water has a lot to do with her mental state like forgetfulness and depression.
I have tried fruit juices, breakfast drinks, boost and flavored water, but she turns her nose up.
Depending on the person, you can lead a horse to water...
As for a person with dementia, the brain basically dies, so they just forget how to survive. 😢
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BarbBrooklyn Feb 2020
Has your mom ever had a swallow study? Choking while eating shoukd be investigated by a speech pathologist.
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Yes; my mom (now deceased) and the mom of a friend (92, mild dementia). It is like pulling teeth to get them to hydrate. No matter how much we explain, cajole, etc. it is a problem. And then there are the health issues by the dehydration.

It's not a complete solution but soups, broths, and other "watery" foods can help.
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I had the same issue with my mom. I got a feeding tube in place. She is on continuous feedings on a pump she gets ongoing flushes with water and stays hydrated. No uti's, no hospital visits, weight and nutrition are successfully maintained.
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I have had the same problem with both my parents! As you probably already know, lack of adequate hydration CAUSES UTIs, which causes dementia like symptoms, which causes fall, and the vicious cycle goes on! When I am at their home I push push push water on both of them. Unfortunately, I do not live there so I have little effect there. In addition, they put the heat on 90 and have a huge electric fireplace heater cranking in their small den, also on 90. They overdress and use blankets, too. Why they are not thirsty, I don't know.
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Careblazer310 Feb 2020
Our stories sound very similar.
So very sorry you have to go through this.
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The diseased brain is not going to understand that they need to hydrate. They will have to be reminded every day.
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It may sound mean but at this stage of life, it would be better to let them go. Keeping them alive is only for the kids sake not theirs.
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