My mom was always a picky eater, so placing her in the nursing home I knew eating would be a problem. She has been in for 6 weeks and now has lost 20 pounds. She has severe alzheimers but still pretty healthy. She is a pacer and is on the move all day. She doesn't sit for any length of time. At the dinner table she started putting her head down, I think because she doesn't want to eat the food. They called me a few days ago, and said she is not wanting to drink much and is getting dehydrated. I have been going daily to try to get her to drink some gatorade and eat. She will take a few sips and probably in 3 hours drank 5 ounces. She won't open her mouth when they try to spoon feed her food or medicine. She just takes tiny bites if at all. Her bun and creatine are high, but potassium and sodium are normal. Her bun and creatine were better today then Wednesday. If levels get to high then asked me if I wanted to give her an iv or possible feeding tube. She paces and so I don't know how she can have an iv unless she is sedated. She is not aspirating food but just seems to have lost her appetite to eat. Dr put her on remeron to try to stimulate appetite. Dr said give it another 2 weeks. In 2 weeks she will be gone. Anyway, she is a fighter and always had a strong will to live, and I know always wanted to keep living. She is not laying in a bed looking at the wall. She paces around, still says I have to pee an then sits on toilet. She still says Im thirsty or Im hungry, then doesn't eat or drink much. Maybe they are just familiar phrases. I don't know if she would try to remove the feeding tube, but if it is covered up with her clothes maybe not, unless it hurts. If she does pull it out then I guess we can say we tried. Because she is still so mobile and talking, I think she may benefit from the feeding tube. Would love for so input on my situation.
It's hard but you have made the decision that is best for your mom in not having the feeding tube placed. If you can try to keep her on real foods as long as you can. My mom is now in a NH about 3 years and the last year on hospice @ the NH (shattered hip while pushing her chair & till then was very active even with midstage Lewy Body Dementia). Mom is tiny to begin with so has lost quite a bit of weight and now is in the 70+ lb range and has been for months. From what I've been told by her MD & NH staff, hospice staff & dietary @ the NH, you want to keep them on real foods as long as possible. For us, that means mom's proteins are "mechanized" so that it is easier for her to chew but all other foods are just the same as all other residents. Why I asked??? well the whole bite- chew -swallow all help keep their cognitive ability working. Lots of repetitive action and muscle use. The whole hold fork, attack plate, move food about and get it to your mouth all are good cognitive "sparks" for those with dementia. Liquid diet is just too passive. You want them to hold the fork or spoon and push the food about. (Yes it is a total mess and I got a whole stack of terry oversized bibs for her so all good) Mom has a special fork for this. OXO type of fork (got it at Bed Bath Beyond) so big fat handle & easier to grip. Mom has asked for sandwiches as she like to hold it & also I think it's that she has control over this tiny aspect of her life. Dietary has her getting a sandwich cut in 1/4's for lunch every other day. Dietary can really do a lot of specials for residents but you have to request them. I do this in the every 90 days care plan meeting that the NH does as dietary is @ meeting.
As far as enhanced beverages, mom is on TWOCAL HN with FOS (Abbot Labs). Probably is the main reason she keeps the little weight she does have. It's for those requiring low-volume feeding. Hospice orders it. She gets 2 - 8 oz cans a day. She had gone the Boost route - as Boost is fruit based and she is lactose intolerant so Ensure is out for her. But Boost does not have the higher level of protein, carbs & prebiotics that TwoCal does. My mom is totally now bedfast so the prebiotics are important to keep her bowels/colon healthier.
As to the specific and limited liquid enhancement, I'd like to just share our experience. Since Dad was on Warfarin, was dysphagic and completely NPO for several months, the rehab center physician recommended Nestle's ProBalance. It has less Vitamin K than other liquid foods.
Adding a little bit of humor...when the supply of ProBalance was delivered, the deliveryman wheeled it up on one of the rolling hand carriers. There were 12 cases! I think there were 24 cans in a case. Dad had 6 cans of it daily, so that's 72 cans a week.
I had to quickly clear out the entry closet to store nothing but cans of liquid nutrition. It was almost funny to open the closet and see nothing but cases of liquid food.
I had to get another wastebasket just to hold all the cans for recycling!
While reading, they say MEDICATIONS can cause appetite loss, but I believe it is the lack of drinking water, that brings a stench quite unimaginable to the mouth (gargles with peroxide, dentist suggestions for the white coat) that brings the disdain for food.
I am no expert, sitting with her (87 year old) as I have for 8 years did not help, playing German (she's Austrian) music as I have for 6 months, did not help with eating but helps elevate mood, we will be checking on the BP medicine because it does say that it can cause dehydration, nausea, lack of appetite...
We are now worried, because defecation is becoming the new norm...
Your mum seems quite perky so try anything i guess.
So sorry for you this is so hard!
I agree with those who suggest tempting mom with a variety of high calorie treats and allowing her time to adjust to her new home. Make sure the staff is on board with helping to coax her to eat and drink and watching her for signs of distress and spend as much time as you can with her so you can look for signs of whether this is an adjustment or if your mother is simply entering the next phase.
I would draw the line at any attempt to force nutrition. Cessation of eating and drinking is a natural part of the dying process (not all of us die quickly in our sleep - some go quite slowly). When it's time, it's time. We can intervene and delay it, but we should ask ourselves what is our motive and what do we hope to achieve by it.
I dont understand how this happens as my friend told me that here the docs will gather family and if majority dont want this then the doctors agree? Gosh SO important that parents write this somewhere.
Gav how heartbreaking and sad your poor father should never have had to go to this extreme its so wrong.
I hope you and your family find peace and comfort with each other during this time. Take care.
No feeding tube... don't prolong it. mom paces too. It is all part of it......Life as we know it changes. Friend says it is the slippery slope of life...give her treats, maybe a milkshake? Keep her as comfortable and let her know in your way, you love her always...thank her for the life she gave you....happy visits..Mom was asleep yesterday, I rubbed her feet. she didn't wake up. I called today and she is okay....one day at a time....
Is she on pain medicines? They can cause a lack of appetite and constipation. The nursing home should be checking for regular BM's. Jims had mentioned possible BM problems so I don't need to duplicate there.
I went through months of the same thing with my mother concerning the eating problem. She would ask for food and I would hurry up and make whatever it was she asked for and then she wouldn't eat it. Sometimes she would take one bit and say 'that is all I can eat' or 'here you eat it'. She always loved my cooking, always ate whatever I cooked. There it sat...wasted. Then she would ask for something else and I would make that and well I think you can get the idea.
Some of the problem was the pain medicine she was on made her loose her appetite. The other part of the problem was a water pill which made her nauseous. After she was taken off the water pill and pain medicine her appetite returned to normal.
If you know what medicines she is on check to see if any of them can cause a loss of appetite. Don't be afraid to ask the nursing home for a list of medicines she is currently on so you can have it for your records. (That is if you have HC POA) It is good to double check to make sure what she is being given is correct. Never hurts to verify.
Do you bring in any of her favorite foods/drinks if the nursing home doesn't supply it? I use to bring in foods for my mother because the sodium content of the food in the NH was too much for my mother and she wouldn't eat their food. I use to make protein shakes too. I added protein powder and fresh fruit to ice cream and made a shake...hydrated her and gave her protein, fruit and calcium too.
Take care.
Sounds like her lips need some attention. It hurt just to read about it.
She has and insists that if she ear more than half that she will through up, it has never happened in 9 years, nor has choking on a pill, but insists that both of those will happen, every meal and every Am and Pm medication cycle...there is nothing wrong with her stomach, dentures, urinary tract,swallowing, etc...for her so it seems, it psychological, self talk...we cannot figure why she cannot relax and enjoy her food...she will scarf down a piece of cake, cookie fast, but real food always takes time.
One of the things I left for her lunch were three little cherry tomatoes with half a sandwich and chips and a cookie. The next morning two tomatoes were left. I asked her why she never eats those and she told me they were "special" because she thinks they're expensive (from her childhood) so she's "saving" them. ARGGGGH! So I run into that a lot with her - Depression Era mentality even though we've been away from the Depression for 80+ years. It had a POWERFUL effect for those who lived through it. I've gotten her up to 117 lbs and am aiming for 120. But every step is a lot of work for me.