My 93 year old dad was diagnosed 2 years ago with slow steady decline since then. Got aspiration pneumonia last week, was hospitalized and now in rehab. This case of pneumonia really has seemed to cause a sharper decline in him though maybe that will improve after recovering from pneumonia. The bad news is that the professionals say his dementia will cause aspiration which will cause pneumonia again. People there are intimating his next step might be nursing home or memory care. I guess they are just giving their professional opinion, which is right, but I believe my dad is still aware enough to want to be home. But I think they question whether we want my dad to be back and forth to hospital all the time. Tonight he asked when he could go home. I said in a couple of days. He was very upset and said he just wants to go home and be in his own bed. He has lived in the same house for 60 years and I think he would just like be home and die at home. I suspect there will come a time when he does not know whether he is at home or not, but until that point happens, I would like him to be home if at all possible, maybe not possible. My dad has not been shortchanged. I see stories on here that are so much more tragic, yet my dad is now almost 93 and had very good health for 91 of those years. Even now the professionals cannot believe his age. He has better blood pressure than me, better blood sugar than me, and a full head of hair and I don't. (that last one is the one that really irks me!) Perhaps thinking best plan is to just accept he did well, and bring him home to live rest of his days.

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I really hate that I took Dad out of his home of 58 years. He lived with me for 6 months, fell twice, was hospitalized, then rehab, and then I sent him to Memory Care. He was high functioning when I placed him, and he always just wanted to go home or even back to my house. It made me feel like I'd 'kicked him out.' But the truth is I might have handled things a bit longer, but he declined rapidly, and I know that I couldn't have after a few months. Leaving him in his home would have meant almost immediate death. I couldn't keep care-givers on a regular basis, and I couldn't do it myself from across town. I was already going over 3-4 days/week and even spending nights. So, as much as I hate what I did, I believe that I really didn't have any choice. Add to that, I found out just before Dad passed that I had some health issues that I'd been ignoring for a year. As for dysphagia recommendations -- Dad wouldn't drink the thickened liquids. They made him miserable. Actually the best food we found were the cheap Oncor meals with meats in gravy. They seemed to give him the least trouble. He enjoyed Popeye's spicy BBQ chicken, though. I knew he shouldn't have it, but he'd already lost so much...
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Karsten, boy, can I relate to your situation! I've been dealing with dysphagia (swallowing disorder), as have others here, and we've found ways to deal with it. You're not alone.

1. Dysphagia.

I'm going to share some clarification from a top notch speech pathologist at the hospital we use. Aspiration might not cause aspiration, but it certainly CAN cause pneumonia; it may NOT. None of the medical pros with whom I've spoken have said that aspiration pneumonia is an absolute certainty; there's a high likelihood though.

The dysphagia diet helps to minimize aspiration, which is to my understanding, the goal.

You can buy Thik-it at grocery stores, probably chain pharmacies. Instructions indicate how much to use for honey or nectar thick consistency. The powder is mixed with liquids; you can easily do this at home.

2. Dysphagia and nutrition.

One of the side effects though is that since not all of the food is being swallowed, nutrition is affected. That can lead to weight loss. I've yet to get an answer from medical people on how to counteract dysphagia related weight loss in an older person who's already declining overall.

Ensure Plus can be used; it should be thickened as well (as I've been advised).

There are other modifications that can be made. Chin tucking while eating helps create a position in which food is easier swallowed, thus working against the possibility of aspiration. It's not a complete solution though. Sleeping with double pillows or head elevated helps. Swallowing exercises help as well. I've asked repeatedly but only during this last rehab have I been able to get a speech therapist prescribe swallowing exercises.

Ask the speech pathologist at your father's rehab to integrate swallowing exercises into his therapy before he goes home.

3. Sources of pureed foods.

Gordon Foods seems to be the supplier of choice for already thickened water, and Magic Cups, which look like the old Dixie Cups we got at school luncheons when I was in grade school. Gordon also has a riblet, a boneless barbequed rib, and it's tasty.

4. Home pureed foods.

You can buy a mini food processor (Kitchen Aid makes a good one) and puree foods. You can also use an immersion blender. I use a blend of home cooked foods, supplemented by Lean Cousine (no preservatives) or Stouffers frozen meals and much of Meals on Wheels diets. You'll probably be given a Dysphagia diet menu. There are ways you can modify the restrictions.

I use lemon pudding; lemon stimulates the swallowing muscles and was used with the little swabs during speech therapy. I haven't been told that lemon pudding is medically used, but it tastes good and is on the dysphagia menu as tolerable.

Modifications: Toast can be eaten if smeared with yogurt or applesause, which "capture" the crumbs. One of the dieticians at the rehab from which my father just returned home pureed cannolis. She also pureed bread to make pureed sandwiches. Dysphagia diets, however, will reflect bread, muffins and rolls as being ver boten for certain levels of dysphagia. But this clever dietician pureed delicious cannolis! And Dad loved them.

I would start with your father's favorite foods and figure out how to add juice, cider, or gravy to get them to pureed consistency. Post back if you want more ideas. Ther are other threads here on dysphagia compliance.

5. Listen to and try to find ways to accommodate your father's wishes. At 99 and counting, my father is similar to yours; he wants to live the rest of his life in his own home. He now takes only aspiration, supplements, but no prescription medicines except for his eyes. He knows the risks, and is adamant that he is not going to spend the remainder of his life in a facility.

And, importantly, it IS his life.

I know when I can be persuasive and when I can't and this is not a changeable position on his part. I don't believe in the "beating a dead horse" philosophy. Even though it would make my life considerably easier if he went to a facility, I'm trying to create an AL in his home. Private duty care just started, and that's a real roller coaster of an experience, but once you get caregivers that are companionable and meet your standards, they can be of great help.

If you go this route, ask them specifically about the dysphagia experience and what kind of foods they've pureed. I learned quickly when one of the caregivers told me she knew how to puree. That knowledge consisted of knowing that the kitchen staff did it. She NEVER had pureed food herself, did, although she represented that she had.

Now that I do have at least one caregiver who knows how to puree, I'm going to focus on presentation - maybe cloth napkins, good silverware and china, flowers, maybe soft music in the background - all the amenities of a 4 star restaurant in his kitchen to make the mush food less of a sensory deprived meal. (Eating mush is somewhat repulsive!)

Think of ways to bring what your father needs to him, in his home. If he enjoys socializing, see if there are home bound visitors through your local Meals on Wheels program or VA, or church if he has one. Contact his friends (and family, if they're involved) and arrange for cards or phone calls. Avoiding isolation is critical unless he really wants to be a loner.

If he's a Veteran, contact the local VA and ask about volunteer visits. I tried to get a volunteer with a dog, for animal therapy, but it was too far for her to drive (well over an hour's drive to Dad's house).

7. Facilities. For at least the last 3 - 4 years, I've been told Dad needs to be in a facility. He refuses to go; the medical and rehab personnel can only observe him while he's there and don't know how he'll manage at home, living in a lake area where he can be assisted in walking to the lake in the summer and interact with neighbors. That interaction is important to him.

Medical care is changing, perhaps as a result of consolidation and business decisions being made by hospitals acquired by for profit entities. It's segued into a "business of medicine". W/o researching, you won't know which medical organizations may be affiliated with others, which ones may be operating their own private facilities, or what other affiliations exist.

One of the rehab facilities we formerly used developed an AL arm; it wasn't publicized, but some staffers let it slip in conversations. Of course, that was their recommendation post rehab. When I inadvertently told them that it wasn't an option, they actually accelerated his discharge, sending him home well before he was ready.

One of the local hospitals has been involved in joint ventures, one for a rehab facility which was the worst place we'd ever been. This hospital also has a private duty affiliate. CVS has acquired the best independent pharmacy in the area.

The medical field is big business - look at the big push by Big Pharma with tv ads featuring people with co-morbidities bounding around their yard, beaches, enjoying life to the fullest. And pills enable all of that - that's the message.

Consider that if you do evaluate any Al Facility; try to trace the corporate affiliates, and that might give you some inkling of what kind of focus the facility will have.

And also remember that liability and CYA are important factors. If a rehab facility recommends "professional" care and the family chooses otherwise, the facility can also cover itself through its recommendation for professional care. If it recommends home care, it might eventually be concerned when untoward events occur and a family claims that it wasn't advised a facility was the right recommendation.

Money talks, and it speaks loudly in the business of health care, as do possible legal implications.
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Thanks for all the helpful advice and encouragement. I myself am single and financially secure and would have time to help out at their home but my mom is OCD and drives me nuts.

He has had a swallow study and is on what they call level 3 Nectar. He can eat most solid foods, but the issue is the liquids. . They have to be thickened to lower, not eliminate, but lower the risk of aspiration. Swallow study also suggested he is aspirating his own saliva. I think the professionals are just thinking he would have better care in a facility of some kind and I respect their advice. But they are not my dads son and know of his desire to be home. I guess that's where the original question of balance come in. Where is that point? I will look up the Being Mortal book on safe being happy. Thanks.
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Has a swallow study been done? That should tell you if dad needs his diet modified to chopped or pureed.

If people "intimate' things, as them for their reasoning. Ask them if there is an alternative. What are the benefits of dad being in a facility? Would he get better social stimulatiin, more supervision for his eating, better monitoring of his health? Will he be miserable?

Read Atul Gawande On Being Mortal. Great little book which frames the "safe vs happy" problem well.
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If possible and you are willing and able , let him go home and finish his days their, as long as he knows home. I hope and pray if it is at all possible you will take him home. It is what we would want if we were in that situation, someone to love us enough, to help us be in our own beds.
May God bless you and your family through this difficult time.
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Karsten, how much help can you bring in? Are you the primary caregiver? Is he bedbound? Is there any equipment or supplies that would make taking care of him easier?
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