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My father is 94, and is diagnosed with dementia. He sleeps a lot. I try to keep him mentally active by talking to him frequently, asking him what he prefers in way of nutrition, and just in general. I try very hard, to try and decipher what he is interested in, what brings him pleasure, but he is relatively fatigued most of the time, in spite of his adequate sleeping schedule But recently I get the feeling that, when I ask him for example what he wants to eat out of the choices I offer him, that he doesn't entirely understand the choices, or what I'm asking him. There appears to be some cognitive delay. That's new. Other times, he is pretty lucid in regards to his surroundings, and the nature of our conversation. His short term memory is pretty much gone, and his long term memory is better but not great. Overall he seems relatively comfortable, he doesn't appear to be suffering, and very fortunately doesn't suffer from any ailments, or diseases, or conditions, other than the dementia. We are very fortunate.
My brother and I are trying to figure out a basic healthcare plan for him, and are not yet at the stage of outsourcing anything, we would like to try and incorporate these activities, or therapeutic approaches ourselves. I am fortunate to be able to stay home to care for him, but I often feel like I'm unsure of what he needs, beyond the basics, and trying to get the information from him, is really not productive, or realistic in light of his dementia. I end up guessing, and I am not comfortable with that plan, or lack thereof. We are scheduling him for a checkup, and plan on asking his PC, to run some bloodwork, to check for any vitamin deficiencies, perhaps that's a start, but I'd really like to know more about his condition, so that I can incorporate a more "holistic", plan for him, to make his day more pleasant and fulfilling. Thanks.

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Sounds like you are already doing a great job and your dad is lucky to have you caring for him. Keep things basic. At this point decision making is beyond him, just part of the condition. Making sure he is clean, able to take in proper nutrition is about all you can do at this point. You are already providing what he needs which is a safe and caring environment. Nothing wrong with guessing when it is about taking better care of him. You won’t always be right but err on the side of caution won’t hurt. If you can keep him clean, fed, and comfortable you have beennsuccessful. However, he will eventually get to the point that keeping him fed will be a problem. This condition just takes away everything from a person. He will at some point not chew or swallow. Hopefully you had already discussed end of life issues with your dad. Please don’t let family or medical people talk you into a feeding tube at this point. I am speaking from personal experience and from what I observed others going thru with this disease.Aim your care towards quality of life for your dad.
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Your dad's inability to understand what you're saying is known as 'aphasia', and goes along with dementia/Alzheimer's as the disease progresses.

As Alzheimer's disease and other related dementias destroy brain cells, a significant symptom, known as “aphasia,” is losing the ability to speak and to understand speech. Aphasia worsens as the disease progresses. It becomes harder to remember the right words and process what others are saying.

I noticed this in my 94 year old mother about 8 months ago; she is at the moderately advanced stage of dementia herself. She is very hard of hearing so when she kept asking "WHAT WHAT?" over and over again, at first I thought she couldn't hear me. But I was speaking loud enough for the people across the street to hear me............and judging by the look on her face, which was blank, I suddenly realized she did not understand the words I was using, not that she couldn't hear me! That was a lightbulb moment for me. She had taken another step down with the dementia, apparently, and it was showing up with the aphasia now.

It comes & goes; she has times where she does understand me and other times where no matter what I say, she's totally lost. That's when I change the subject; no use in trying to make her understand something she's incapable of understanding.

Your father doesn't need as many calories and/or healthy foods as you think he needs at this stage of life. Let him eat what he likes and wants, not what you think he 'needs', that's my suggestion. In Memory Care Assisted Living, they offer my mother 2 different plates of food and ask which one she'd like? She can point and choose. That's a good idea in general when dealing with a demented individual; don't ask questions that require word answers; offer two choices and let them point to their answer. Same thing with snacks. Offer him a yoghurt or a banana, for example, or an ice cream cone or some cookies. Elders prefer sweet tasting foods as their taste buds change as the dementia progresses.

You are a good daughter and caregiver to your dad. Don't second guess yourself or question your decisions which are all based on love and caring. Also, don't rely too heavily on useful info from your dad's PCP about his condition; many doctor's are in the dark about dementia. Your best bet is to go to ALZ.org and read up about it. They also have an 800 # you can call to speak to a real live person, and they handle all the dementias, not just Alzheimers.

Finally, you may want to check out some Teepa Snow videos on YouTube; she is great! She covers a wide variety of topics about caring for elders stricken with dementia with a kind & loving (and humorous) approach.

Wishing you the very best of luck with a tough job.
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Bless you for wanting to tackle dads care. It won't always be easy, but it will be worth it.
As far as him not understanding what you're asking him sometimes, and specifically at meal time, try and make it easy for him, and only give him 2 choices. I had to do this with my husband, and would actually show him what his choices were, so he could point at which one he wanted. My husband wasn't a big eater, so it was maybe a choice between a hotdog and potato salad, or a frozen dinner.(I'm not much of a cook). That really did make my life much easier, as it can be quite frustrating for all parties involved if you're going round and round trying to figure things out.
Also someone with dementia, does much better with a routine. They typically don't like when that routine is disrupted, so try to stick to the same routine every day.
The best thing you and your brother can do now is to educate yourselves about dementia, and all that it entails. Teepa Snow has some great videos on YouTube about dementia, that you can start with. The book "The 36 Hour Day" is also a great resource.
You are going to do just fine in caring for your dad. All of us that are or have been a caregiver, have had to learn just like you are, the hard way. Just don't be afraid to ask for help if and when the time comes.
And of course we are here for you on this forum to try and help with any questions you may have along the way. Wishing you the very best.
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lealonnie1 Jun 2021
I second the recommendation for The 36 Hour Day book.......it's a GREAT reference manual more like an encyclopedia than anything. I forgot to mention it; I just picked up a copy & am blown away by the useful info crammed into it!
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Affirming the helpful responses you have gotten so far. Also you will need to keep an eye out for issues that they may not be able to express to you. If your dad ever complains of an abdominal pain higher up (like under his diaphragm) it can very well be constipation. In my case with my 99-yr old aunt with advanced dementia she struggles with this because of a swallowing issue (which she's had her whole life) and just not wanting to drink much. So, we are careful about how much OTC pain meds she gets, and we serve her soup for sure every lunch (because she loves loves loves this one chicken soup so who cares if she eats it every single day?), we give her Jello and watermelon, cucumbers (all have high water content), plus Citracel and Colace. Her sister was giving her Tylenol PM to sleep at night but it has pain meds in it that cause constipation so we stopped giving it to her. Constipation can diminish appetite if it goes for more than a few days.

We also started having my aunt help us with "tasks" like folding a large pile of kitchen towels, which she gladly does while we're puttering around getting dinner ready. Or she sorts 3 different colors of poker chips. Often without asking her to do it she will create an actual pattern with the chips or spend time counting them. This burns mental energy and she sleeps through the night with no problem every single night. You can have your dad sort plastic flatware, or match nuts with bolts or sort screws from nails (or whatever his hands can manage). You get the idea. Wishing all the best of the rest of your time with your dad!
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In general it is difficult to make a "plan" for someone with a bit of dementia or short term memory changes. Their lives are more fluid than static, and so honestly the best thing you can do for yourself is NOT have a big plan, but be able to roll with the punches a bit more. They often like a routine, but they will form that for themselves often enough. Let the elder be your teacher. If there is a specific question about a specific thing bring it to the Forum and I know you will find lots of folks who have experience to help you. You might ask your Dad's doctor for a PT/OT eval that you can work with the practitioners on, learning what he is capable of and what might help him in activities of daily living.
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My dad is 94 and was and started showing signs of dementia in 2014 in 2015 his GP and the Memory Clinic team informed us he has severe mental incapacity. during the years his memory has deteriorated and he requires support or prompting with most of his basic care needs. Very quickly we learnt to keep a very clear routine in place as he found any change of routine a challenge resulting in him becoming anxious and confused. As his memory deteriorated he began to ask the same thing over and over again we found that answering dad as if was the first time he had asked was better for him than saying 'don't you remember we just told you that' We talk a lot about the past as his long term memory is better however this is starting to lessen. We still give him choices however most of the time he will say I don't mind you choose. We don't put any pressure on him if it is clear he does not want to do something. We don't make changes to his surroundings such as changing the color of the walls / paintwork when the kettle went we purchased an identical kettle we removed the cooker and provide all his meals that I cook and heat in the microwave. Let him do things that the dementia nurse told us that make him feel in control such as piling toilet rolls and tissues in his bedroom and getting upset if I try and move them so move them one at a time without him noticing and he can then top up.
Always having a spare identical TV remote control as he hides it and becomes very distressed if we cant find it. When he is tired let him rest don't pressure him to join in conversation which others who don't understand his needs. His routine even impact on him if they look unfamiliar there we have to buy the same color trousers and jumpers socks otherwise he will want to put dirty cloths back on. If you do everything you can to keep him as comfortable clean caring and safe environment you are doing the best you can. We might not always get it right but one thing to hold onto is that whatever you do will be with the very best intention.
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