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My 85 year old mother had a stroke on 3/16. She went into the hospital that day, and thankfully there wasn't too much brain damage. She was kept there 4 days, released into short-term rehab on the 19th. When she was discharged from the hospital, she weighed 90 lbs. She's been extremely thin for years now, but at the doctor's the week earlier, she was 92 lbs. She's 5' 3" tall.

So she's been in rehab two weeks, and today I find out - not from the rehab itself, but from the RN at the assisted living community mom hopes to move into after rehab, who was there to evaluate her - that she is now 82 lbs.! She's unhappy there, doesn't like the food, and is supposedly a "choking risk," so is on a soft diet. There's no evidence that she's ever choked, either at rehab or at the hospital. The rehab's answer is to give her Ensure, which she hates and won't drink.

I'm in totally new territory with caring for my mother, the stroke, rehab. I'm 300 miles away. My father died on Feb. 16th; and after 54 years of marriage, my mother is in despair. That said, she tells me she's hungry all the time, but just doesn't like the food. But a 10% weight loss in two weeks sounds like starvation to me.

I'd appreciate any perspective more experienced caregivers can provide. Right now I'm so angry at the rehab I can't think straight, but don't know if I'm overreacting. I am going to call her regular doctor and tell her about the weight loss.

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You're good then. She may be getting a little down the wrong way, but watch her breathing/respiratory status. There are lots of entree ideas out their, just google dysphagia recipes.
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Ps I consider her decaf tea and decaf coffee her waters lol. (With thick-it)
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Hi. My mom would die choking if I ever gave her water with or without her teeth. She gets plenty of fluids. Doctor said that she needs 20-24 oz a day. I give her about 16 and the rest is in her pureed foods. Shes been getting this over 6 years no problem. They dont need as much as you might think. I need puree supper ideas , she coughs sometimes like 30+ mins after a meal too. Maybe I should divide up her meals. She is sitting up in bed still and I feed her a popsicle to stop her coughing. She rolls her eyes and smiles at me she loves it! Lol time to go roll her bed back down. Thanks !
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Frasier is mainly for folks who are not getting enough water - there are some folks who just hate thickeners and won't drink enough. Veronica has got it right. You don't need to do that if someone takes enough thickened liquids though. And you don't typically do it for someone who chokes coughs and sputters on unthickened liquids either. So in your specific case it probably is not even a cosnideration. My dad did not need it either, and I suspect I won't if I ever get dysphagia...I love thickened coffee, for one thing :-) and have an appetite like a horse for another.
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RR I just looked up the Fraisier protocol and this is my interpretation.
the premis is that plain water is unlikely to cause aspirtation pneumonia in an individual as long as agressive oral care is performed to keep the bacteria in the mouth at a very low level. Plain water in any amount is allowed before meals. After meals wait 30 minutes which allows any foods or thickened liquids to pass into the stomach. Have the patient thoroughly clean their teeth or the mouth dentures be cleaned for them and once again any amount of clear water is allowed. This was developed to prevent dehydration by encouraging patients to drink water. I don't know where dentures come into the picture. Can mom drink plain water with them in?
It is thought that if plain water is aspirated it can be readily absorbed by the lungs so no pneumonia developes.
Very interesting I did not know any of that. Just starting on my own swallowing investigations - hopefully just another notch in the medical records!!
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vstefans, I looked up Frasier dysphagia protocol free water and I am totally confused. My Mom has dentures I remove every night and she cannot drink water without it thickened . Please explain if you can, thanks!
RR
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Yes, 8 lbs. in two weeks is excessive given her present state. Call her doctor and get her off that soft food diet, or at least explain why they put her on one. There also might be another problem going on with her body and you should be her advocate and get food into her ASAP, even feeding her every two hours. An NG tube can also be inserted. Good luck! My condolences for your father.
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Reverse roles, that's the best description you just gave of use of thickeners in dysphagia. My dad also had no problem with his thickened liquids. Some people do not like them and may need a Frasier protocol to get enough water, but only if they don't cough and choke overtly when they drink it. Sometimes the aspiration is silent and that can actually be worse. Just google Frasier dysphagia protocol free water and you can get the info.
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Please dont think a choking risk is necessarily choking on just food. A choking risk also means liquids, especially liquids. I have to thicken my Moms tea or anything she drinks . Think of it this way, if the food sticks to the spoon when you turn the spoon on its side, it will stick to their throat. Vanilla yoplait yogurt is a great consistancy, like a loose pudding. Drinks can cause the worst choking and aspiration/pneumonia and death. I live it every day. I must say I make puree foods for my Mom and they are delicious, I wouldnt feed her anything I wouldnt eat, real food, whipped well with a "bullet" processor. Dont take it lightly, I did at first too until I saw my Mom suffer coughing/choking on what seemed like nothing.I now take 2 hours to feed her, a lot of food, all pureed with a thickened drink and she eats it all up.
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I have a similar problem with my daughter, 32, with brain cancer. Just no interest in eating anything but junk food and sugary drinks. The eating part of her brain isn't working right, and your mom may have damage in hers from the stroke. Bloodwork will tell you if the kidney, liver etc are properly functioning. If the organs are shutting down, no amount of food will work, the body is no longer using the calories. If fat melts off and muscle is weakening, skin getting thin and rips easily and urine darkening, it is time for Hospice.
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Not going to jump into this hornet's nest except to say that Ensure is disgusting but Boost is very pleasant.
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Something else that I should mention, after my mom's stroke, while in rehab, she was found to have impacted food in her esophogus. Nearly killed her; at my sister in law's insistance, they got her to ER and cleared it out. The NH is not going to fool around with the swallowing stuff, it can be deadly. It's part of the stroke/dementia symptomatology. There is a point at which you can no longer fix, you can only ameliroate. Talk to the speech folks, they are the experts at this!
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ThereseC...my mother also quickly lost a lot of weight after being placed in what was suppose to be "short term rehab", 2 weeks according to the doc's orders. She lost twenty pounds in that two weeks. Had been eating less with gradual weight loss for months prior to rehab. All doctors and nurses responded with was suggesting Ensure drinks and cups. My mother sometimes drank/ate a little of the Ensure, and sometimes not any. Would eat very little solid, or then purried food. She said it didn't taste good. After further pressing the point with docs/nurses that she's losing a lot of weight and not eating hardly anything, they then recommended a pill that was for anorexic patients, and were optimistic about it improving her appetite, based on experience with other patients. But, it took 7-10 days for the full effect of the pill to kick-in. My mother didn't last that long. It was too little, too late. She died three days after they began giving her the appetite pill, which was a week-and-a-half after she first entered "rehab". IMO my mother actually died of starvation.

I agree with others, you need to be with your mother and find out more about what's going on with her weight loss (how long?), eating (how much, if anything?), treatment (how are they responding to the weight loss/eating issues, if they are?), and future plans (doc's thoughts, evaluations?) She may be suffering from dimentia or other medical issues. She could be purposely not eating (she's ready to go.). Or, dimentia or her despair from your father's death could cause her thinking and logic to be foggy.

Keep in mind...it is not uncommon today that doctors place patients, especially seniors, in rehab centers/programs for palliative care, not for actual "rehab". And it is also not uncommon that the doc won't tell you that.

Only after you observe your mother's status and her treatment process can you evaluate the situation and make decisions. The lack of eating issue can be heartbreaking, with many twists and turns. I would visit her and see what's going on ASAP.
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My dad loves to eat, candy, cookies, ice cream, cake...if you get the picture you can see there is a problem. I got him Slimfast Strawberry which he loves, it tastes like ice cream, protein bars (cookies to him), he loves fresh fruit, cut up small, and there are puddings, shakes, etc that your mom might find taste. Some of the official meal replacement drinks taste like yuck. He has gummie vitamins also. Go visit, find a drinkable supplement she likes already mixed, and keep it in her room so she can feed at will. Dad uses a bendy type straw (flexable).
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A "swallowing" test is usually performed in the hospital after someone has a stroke. Maybe check to see if she had one already. Weights can fluctuate from scale to scale and by what clothes are being worn at the time. Weights performed on carpeting can differ from weights performed on floors. I would make sure the weight number you are receiving is accurate. It is likely there is an element of depression going on. Also, if she has been started on a new medication, can affect her appetite. Diabetes is one thing which can cause weight loss, as well as hyperthyroidism just to name a few common causes. The area of brain affected by stroke may have also affected her taste of food. She may just not like soft food. You may encourage custards, puddings ice cream etc. for soft diet. Weight loss is a sign something is not right. Have a talk with her doctor about her condition. This will help to come up with a reasonable plan of care....... Can you move her closer to you or or their other siblings who can oversee her care?
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There is no point in being "safe" from aspiration if you starve to death. Insist on some common sense in the diet.
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When my stepfather was very ill he was put on pureed foods in a nursing home due to aspiration worries and he hated it and almost stopped eating. We signed a waiver so he could have mechanical soft foods and then he started eating again. When he recovered he said he would rather die than be on pureed foods. He was over 90 and in his right mind. Facilities have many choices for diets and some taste better than others. They should definitely find out what your mom likes! If she is able to eat she should not have a dramatic weight loss. Does she have a speech therapist? It sounds like she needs someone to advocate for her. There are also medications that stimulate appetite if she is depressed and not eating. It helped both my stepfather at one point and my mom after my stepfather died. You need to be in touch with the facility a lot.
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Before jumping to conclusions, who evaluated her, the Rn from another facility. Ask for her to be reweighed, which is a normal process for all facilities. Ensure does taste crappy, however if served cold or with a scoop of ice cream in the product it becomes quite tasty. Care plan meeting whether over the phone or in person can be requested at any time.
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The others have given you excellent advice. One word of caution, based on my best friend's experience. Her mother choked to death in a very nice and expensive assisted living facility a few years ago. I wish the facility had identified her as a choking risk and had taken the necessary steps to keep her safe.

My own mother is currently in a short-term rehab center and her appetite is definitely "off." She doesn't like being there, is depressed, plus has been taken off a medication that used to cause her to have a voracious appetite - in fact, she had gained too much weight.

My heart goes out to you and your mom - it's very hard to navigate these waters and to know what's best.
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It might be a different situation, but when my grandma was in the hospital, we found out the hard way that no-one really makes sure the person eats, properly. Luckily, we lived closeby and my mother went every meal time to sit with grandma to feed her. Otherwise, she was kind of so out of it that she didn't even realize it was mealtime and just didn't eat.

Being far away, either you or another family member could travel there to be with her or could see if you could hire someone to be with her. It is hard to assume anything without having someone physically sit with your mom to see what exactly is going on.

Recently, and another totally different situation to yours, but my mom dropped a lot of weight. She was living alone and just didn't recognize it was time to eat and wasn't "with it" enough to figure out what to eat. She is now living with me and eats when she's supposed to and what she's supposed to because she realizes it's meal time in that the rest of us sit down to eat and fill our plates so she does, too.

My point is just that it could be a lot of things. She's in a strange place, maybe scared, maybe depressed, maybe not having her weight carefully watching by these strangers. It could be a lot of things, but you won't know without having someone go review her in-person and get back to you with a report.
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You're not overreacting, you are right to query this; but don't panic. The weight loss might not be as severe as 10 lbs in three weeks - allow for a margin of error in measurement, for one thing, different machines, different clothing. Add in possible dehydration - hot environment, possibly she's not drinking enough?

But all the same, if she's hungry but doesn't like the food (I don't blame her, Ensure is disgusting: I wish prescribers were made to drink it before they order it), would it be worth asking for her swallowing to be reassessed?

By all means speak to the rehab staff and question them closely about your mother's care plan; but don't go in all guns blazing, they probably are doing their best and acting correctly. It's early days in your mother's recovery, there's an awful lot going on for her (and for you too) - maybe take a deep breath and slow down.

I'm very sorry for your recent loss of your father, too. You're under terrible strain all round. Is anyone looking after you?
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I spent 7 months with my mother in a rehab facility after a fal and subsequent chf. While there I noticed they seem to put everyone on restricted diets, soft, chopped or puréed foods. Initially my mom had a swallowing issue where she choked and threw everything up. Once this happens they restrict. Once they restrict, I believe nerves get in the way and the choking gets worse. Speech pathology should get involved and be working with your mom daily to give her help and confidence in swallowing. Talk to them to find out what they are doing to get her back to solid food. This therapy can vary greatly from on facility to another. The first facility did almost nothing to help and showed effort. The second facility offered great therapy that got mom back to solid food and eating and swallowing normally without any invasive procedures. As background, when moms food was chopped she was furious and would not touch it. After talking to many other seniors they too would not want to eat if the food was altered. This must be an issue of loss of control and pride, so getting things back on track is a priority. So first things first. Talk to the dir of nursing or the administrator. Find out what their protocol is for this. I learned that you need to be the patient advocate and let them know what is acceptable. Being so far away is a challenge. We supplemented moms food with lots of ice cream and milk shakes. The "ensure" they offer in the facilities we have been to is not "ensure". It was called "resource" and mom would not drink it. Check to see what they are "really" giving her. The facilities mom was in also touted that the serve homemade milk shakes on request. They were good. However, the prob was getting mom to request one. Talk to the dietician and have standing orders for milkshakes to be delivered to her room between meals. You are right to be concerned about the weight loss. Any chance of having someone visit with ice cream? Good luck. Prayers for you
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After my mom broke her wrist and ankle, then had a minor stroke, she completely lost her appetite and went from 135 lbs to 112 in a rehab center. After much trial and error it was determined to be the potassium suppliment she was taking due to slightly low potassium. The day she stopped taking that pill her appetite came back and she put on the weight she had originally lost.
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This is very similar to my 89 year old grandmother. She had a mini stroke in January, so she was also in the hospital for 4 days and then released to a rehab facility for one month of physical/occupational/speech therapy. She was about 117lbs when she went into the hospital from the mii stroke, but she dropped to 106lbs when she was first weighed at the rehab center within 1-weeks time...she dropped her weight very quickly just like your mom. The staff worked with her to improve her eating. When she was released she was back up to 115lbs, and I've been working with her now that she's home and she's up to 120lbs!

The staff will have to keep working with her. If things keep getting worse, they might have to tube feed her. Best of luck to you and your mom!
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And no you are not over reacting. Your mom said she's hungry. She needs you now.
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You need to get on a plane and go see her. She is lonely and depressed. My mom is a high choking risk too. I whip up eggs and milk and muffins with yogurt and use thick it in her drinkss. Your mom needs to be with family in this time of her life with close contact and home cooked meals. Its tough I sure know that! But same thing happened to my mom losing my dad after 57 years. Very very sad. I got 30lbs back on my mom. If they're not happy in their head and heart they need so much one on one love and care. Good luck to you and your mom.
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1).Request a Care Plan meeting with the social service person to discuss your concerns and your options for having the diet changed. Request to speak to the dietitian and the speech therapist at the facility to discuss your concerns for the soft diet and your mom's weight loss and poor appetite. Many facilities will let you and your mom sign a diet wavier that allows her to have any foods she wants. Ask for a swallow study or FEE test to prove she isn't a choke risk and the facility will upgrade her diet.
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My mom lost a ton of weight before her accident, and it later found to be a constriction of her esophagus. A "Swallow Test" will determine if there is a problem. There is a procedure where they open the restriction (out patient surgery). She went from 103 pounds to 170 : ( She's on a ground diet because of her teeth.

Another possibility is that food is making her nauseous, and she's just not communicating that. When my mom was sick once and wouldn't eat, her response was "I feel funny when I eat." I translated that to "nauseous," they gave her a med for it, and she started eating again.
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It does sound like depression. Can they give her medication for that? My Mom did well on ativan and lexipro. She also has lost weight and seems over medicated since being in rehab for a broke femerol neck . She was doing great until they started her on vicodin round the clock. She has expressed no pain in the actual hip. I think she is just taking the vicodin to make the time go more quickly. And the staff is totally clueless . Tried to talk to them about weaning her off but they think it is normal and now she resents it . She was prone to taking Dad's vicodin when she felt like it. Not sure what is the answer here but she exhibits some of the same symptoms of saying food doesnt taste good. I have brought in other food which she sometimes eat.
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Choking risk should be evaluated by a speech pathologist who will try different textures of foods and measure her swallow reflex. You might call and ask for this to be done with someone present who can gain your mom's trust and understanding of why this person is coming in to give her a bunch of food. If speech can't properly evaluate her ability to swallow they will keep her on a soft diet. Have her evaluated by a geriatric psychiatrist. Given her circumstances, she is almost certainly suffering from depression and perhaps from vascular dementia. Most antidepressant medications also increase appetite.
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