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My FIL is 91. He and my MIL are in a wonderful assisted living facility. He has dementia and the inability to do anything for himself except eat. He's in a wheelchair or in bed 24/7. Still friendly, of a happy disposition and knows most people. A rare blessing with this disease. Frequently confused (place and time are the most common), but that's to be expected.
Dad has reached the place in his disease where he is choking on food and water. The hospice nurse (we brought them proactively) has requested a Mechanically Softened Diet. Most of the time, the kitchen/staff are good about it, but often they are not. When asked about it, they say "we gave him a few chips because he felt bad that he didn't have any." Honestly, I get it! Food and the enjoyment of partaking in a meal in the dining room with friendly people is about all he has left. Getting bowl of tiny, chopped up chicken and mashed potatoes is distressing to him when everyone else is getting a salad, baked potato and a grilled chicken breast.
Aspiration pneumonia is a liklihood if the staff keeps giving him little bits of things that he enjoys. Heck, the most usual suspect in his choking is a glass of water. He loves, loves a glass "of icy cold water, the colder the better."
Have any of you struggled with doing what's best medically, and doing what is enjoyable for a person that doesn't have long to live? What did you decide and how did you make the decision?

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I feel like if the only enjoyment I have is good food and fellowship over that food, I am 91 at the end of my life, I don't want you to take that away. If it means I don't live as long in this broken old body with a broken brain then that is okay. I need to find enjoyment wherever I can because this world doesn't make any sense to me and all I know is right here and right now.

Just my opinion for my end time wishes.
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kirahfaye May 30, 2019
Some times we need to think of the affect of our desires on others. My step-dad, who had Parkinson's, choked to death - on a mouth full of soup my mother though she had "mashed" up enough. She mashed up his food because he hated eating food run through the blender. The distress she went through, helplessly watching him gagging for air on the floor for several minutes (he had 60+ lbs on her) caused her to become depressed, anxious and withdrawn. She felt responsible for his death. It may have even led to her current state of dementia since she stopped taking care of herself properly until I was finally able to get her up here with us. I know my step-dad would have given anything to keep her from experiencing what she'd going through over these past 8 years - even to accepting the blended, soft diet he disliked so much.
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I am a speech language pathologist that has done many evaluations for nursing homes and hospitals. Usually when they are on Hospice, that covers everything, but I have done bedside swallow assessments and tweaked the diet a little-and trained staff and educated staff. Request an evaluation. The advice given here might be good for one person, but not another. A modified barium swallow study done may show what he can handle.
I have seen residents that choke on everything, but can eat a whole piece of pecan pie with no problem.
The speech therapist can educate staff and families, and can do therapy to determine best methods for feeding. It is not a long drawn out therapy.
And the family can make an informed decision about what to do. If I was 91, I would want to enjoy my food. But it is not enjoyable when you go into long coughing fits or turn blue.
But staff aides should never give out food that is not on the prescribed diet.
It is a very distressing and scary part of the progression of the disease.
I wish you and your family comfort at this time.
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This was, for me, the very most difficult part of the process by which dementia ends lives. We were very fortunate that for 99 ½ years Mom could eat and drink anything, was physically healthy except for knee and back pain, and (most days) remembered who we were, more or less. (She sometimes looked straight at me and asked where Linda (that’s me) was and when she would be home. She referred to my husband as “my friend over there”, unable to dredge up his name from the recesses, etc.). Anyway, after a bout of hospitalization for an extreme and complex UTI, she was released into a care home we had carefully chosen. We had hospice overseeing everything. When she began to be unable to swallow yogurt, water, or even her lifetime passion — ice cream — coupled with increasing anxiety about not being able to go back to our home where she had lived for 9 years — she seemed to decide it was just not worth it. Hospice told us that when they begin being unable to swallow, it’s the body’s way of saying, “It’s almost time for me to go.” And in this case, they were right. We tried all variations of soft food, if only to be able to mix her medicine into it and still get it into her system. No go. Watching her for 3 days with the oxygen thing in her nose which she HATED, and unable to swallow or eat or drink (only ice chips in her mouth now and then) was the hardest thing I’ve ever done. I felt completely out of control and helpless to do anything to make her more comfortable. Hospice kept her comfortable with pain medications any time they appeared to be needed (moaning, etc.). She stayed conscious and made eye contact pretty much until the end. We talked to her and knew from her facial expressions that she was responding. We had people who could not visit call her and she listened to their conversation and smiled (especially with my oldest sister who is hospitalized with MS and could not come in person). It was as much closure as we could give her. After 3 days of this, she passed in her sleep about 5 AM. The only staff non-compliance issue we had (and it was a buggy) was a night nurse who (before the non-swallowing thing) found blood in her Depends one night and immediately shipped her off to a hospital despite her and our express instructions and a DNR. She justified herself by saying it was the “wrong” DNR — there had to be both an out-of-hospital one and an in-hospital one and they claimed theirs had to be the in-hospital one. So instead of doing what we had all discussed or calling us to discuss options, this one CNA made a decision which probably unnecessarily prolonged my Mom’s dying process, certainly put her through a very traumatic hospitalization to which she was 100% opposed, and totally disregarded the idea of using common sense and verbal agreements instead of rigid adherence to a rule that was out of sync with our entire understanding with the facility. I was out of town and my sister was with her and was hesitant to be as assertive as she normally is because she wasn’t sure it was what Mom and I had discussed (the old “doctor/nurse must know best” thing). So I got to also deal with the guilt of having gone to my granddaughter’s 2nd birthday celebration in another state. So, bottom line, (1) when they can’t swallow any more, don’t force it - but also don’t allow a feeding tube. It’s usually a sign that it’s time. (2) Don’t be overly “nice” to staff. They have lots of people to care for, and occasionally you get to be the squeaky wheel to guarantee that they follow your wishes, not their opinions, however ‘educated’ they claim those to be. (3) When you delegate care, be sure to fully inform your delegatee of what is and isn’t allowed, then trust them and let go of whatever happens — they are also doing the best they can by the lights they have. Blessings as you deal with your loss!
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Johnjoe May 31, 2019
Your Post is so very well worded Lindabf and I agree 100% with You. When I cared for my own Mother from diagnosis to the End Who had alzheimer's at home in Her own home I asked Mom one day what Her wish would be if She lost the ability to swallow Her food, would She be in favour of having a feeding tube inserted ? because I did not want to be faced with making these kind of decisions that can lead to dreadful guilt afterwards. This was my Moms reply "NO NO DEFINITELY NOT. LET ME GO QUIETLY INTO THE NIGHT, "WHY PROLONG MY AGONY ANY LONGER. I HAVE LIVED A WONDERFUL LIFE AND WHEN THAT HAPPENS THEN I WILL BE READY TO GO.
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I did give my mom things like potato chips or tiny nibbles of things I
knew she enjoyed, but I was her daughter, her POA and I had educated
myself on the ins and outs of dysphagia and modified diets. Frankly I'm appalled that staff is deviating from the prescribed diet, dietary aides do not have the training to make those kinds of decisions and since he has dementia neither does he.
My experiences were the opposite of yours, they held too rigidly to the care plan and tried to chide me for giving my mom things I knew she could handle. Another peeve was that often meals that were supposed to be easier to eat were not - meats like minced chicken breast that had the consistency of dry sawdust. I was in the dining room with my mom for one meal a day and observed what was going on around us - the care taken with diets for those who needed any kind of adaptations was inconsistent and often sub par.
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annandpaul1629 May 31, 2019
Assisted living facility has always told us that the resident can choose whatever she wants to eat, even if it isn't good for her health. A nursing home may be different.
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This is where it would be soooooo helpful for us all if mental capacity and decision-making responsibility were an On-Off choice. But it ain't.

I can pass on the theory-in-practice applied in a urology ward, not that the specialty matters in particular, where many of the patients were frail, elderly and mentally frail. Your "patient" has dementia and is therefore no longer able to make decisions. But that doesn't mean that the patient doesn't know whether or not he wants a cup of tea/glass of refreshing cold water and doesn't remember that the last time he had one he choked and spluttered 'til bedtime. Offer alternatives, explain the difficulty, adapt the foodstuff or drink; but in the end, if he'd rather die happy with a packet of chips and a frosted glass in his hand, he can have that choice. As you ask, what's the point in giving him a longer miserable life?

But kitchen staff and basic grade care assistants should NOT be taking this into their own hands and disregarding patients' charts. If they do, report them. Nicely, not angrily, but report it. What if a coeliac suddenly decides she fancies a muffin? What if a patient forgets all about his nut allergy? The rules are there for a reason and they must keep them. If this is happening a lot, it's a training issue which the facility must address.

As regards your father and your personal interactions with him, you can play it by ear and it shouldn't be impossible to provide him with appetising food and treats that are still safe. The clear thickeners won't stop his water being ice cold (and also don't seem to ruin enjoyment as much as you'd expect). His chopped chicken can still have a tasty dressing on it and be attractively presented. How about ice creams and sorbets? Maybe, even, he can have something crunchy and tasty, but only if you're physically standing by.

There's no perfect answer, but what's definitely not okay is well-intentioned ignorance. I would raise the roof at the thought of some kind kitchen assistant standing there and saying "oh I didn't realise" when she's told a resident has just inhaled his potato chips.
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Sometimes we have to do very difficult things for our parents. My biggest recommendation is to try to avoid a feeding tube.
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Mhillwt May 31, 2019
We had the option of feeding tube and decided against it since we thought dad would hate it but he hadn’t eaten in weeks due to infection and feeling sick so we had to go hospice route ..where you have to disvontinue life saving antibiotics and he died in 3 days ...horrible choices that didn’t seem fair
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As someone who has been through this with their Mom and still am I would suggest the following...
When my Mom first went into a nursing home 4 years go she had pneumonia from aspiration pneumonia, in fact she had it so bad the food ended up in her lung cavity and she was inserted with a chest tube for several months .
She , with many prayers was able to come home and have aids come in and help her get in and out of bed.
I have her on a pureed diet and all thickened juices and water.
I get her meals delivered from Mom's Meals , and all of her thickened drinks and some of her breakfast pureed foods from Hormel Labs , Although the foods are pureed they have great flavor,
I also have her on a 500 calorie a day high protein shake from Hormel labs also.
She will be 92 this year and is in very good health. Only prescription drugs she takes now are folic acid and her arthritis pills..
The medical community is not much help as far as to where you can find these foods .. Good Luck!!
She has put all of her weight back on,
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This is why I am keeping my 1969 GMC pick up. I have made it clear to my kids that when I become a burden Im going to pull my truck in the garage and go to sleep.

My Step Mother when she was 90 fell and broke her hip. They wanted to do surgery. They said she would have to learn to walk again told her to expect 2 years of rehab/physical therapy. She said NO Thanks. 5 days later an infection took her peacefully. Her children were with her.

Does your father want to be fed? Is he communicating that he wants to live like this?

Having to force pudding and stuff because the body is giving out. There is no fix here. There is no "this will pass and he will get better" No Thanks
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Isthisrealyreal May 31, 2019
You sound like my husband, he has a plan in mind if he ever gets to that certain point.
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My 92 y/o mother with moderate dementia got out of the hospital last Friday for pneumonia, the doctor said it was aspiration; and is now in a Rehab facility to regain her strength. The Rehab director calls herself a swallow expert & says it was not aspiration pneumonia since it was in both lungs vs. one lung, and her barium swallow test came back pretty okay. Not great, but not horrible, either. I've WATCHED my mother choke on water; I've WATCHED her choke on food she slurps off of a spoon or a fork, I've seen it with my own two eyes. She was put on a mechanical soft diet in the hospital, but not discharged on the diet. The ALF where she's lived for 4+ years does not accommodate ANY special diets, so I was surprised to read the ALF your in-laws live at DO accommodate them at all!
In the hospital, the speech gal recommended an adult sippy cup type of thing that has two handles; it only lets out a certain amount of liquid at one time, thereby reducing the choking hazards. At the Rehab facility, the director said I was 'stripping away mother's dignity' by asking her to use a sippy cup. Which irritated the chit out me, frankly. I explained to her that I was in no way trying to strip anything from anyone, but instead, trying to provide a SAFETY mechanism. Today I had lunch with mom at the Rehab. 4 minutes after we sat down, she choked on some water & then spilled the entire rest of the cup on the table because she no longer has the motor skills to hold onto cups or forks, etc. The very same director rushed over to clean up the mess, and wound up bringing mom a sippy cup with 2 handles on it to drink from. I nearly bit my tongue off rather than make an I Told You So comment.

Mom also, apparently, has a hiatal hernia, so this same gal told her to NEVER eat any of her favorite fruit which is oranges. She also brought in a list as long as a roll of toilet paper of OTHER foods to never eat. All of the foods on the list are mom's favorites, of course, since they all have flavor & taste.

In any event, this long rambling comment is intended to serve ONE purpose: to allow you to see the futility of the entire situation we're faced with. If our folks are going to choke, they'll do so with or without a sippy cup, with or without a mechanical soft diet, and with or without a few potato chips given to them for taste. When dementia & disease has stripped these poor souls of everything else, why not allow them to eat & drink what they DO like?

And, last but not least, who's to say what is 'best medically'? God knows if you ask 10 different doctors or medical 'experts' a question you will get 10 different opinions! So follow your OWN heart & do what YOU feel to be best for your loved ones. Nobody gets out alive anyway, do they? We may as well go out with a smile instead of a grimace.
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Reply to lealonnie1
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The dietician and the speech therapy nurse needs to be involved now. You and the dietician can go on the computer and do an extensive menu and pick and choose what you want your LO to eat and dietician can check off mechanically softened and whatever else may apply to your LO. This I didn’t know when my mother was in SNF. My mother was also dying which I did not know, basically it got to the point to give her anything she wants just to get calories in her. When the problem started that she could not swallow was because she got thrush, so check your LOs tongue. (just trying to cover all bases)
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