She’s getting weaker all the time and while this is to be expected, the pace can be moderated, particularly if she’s getting enough food “energy” each day. But he is with her most of the time and unfortunately has lost any ability to differentiate her needs from his own. He’s struggling with his waist line but it’s a struggle to keep her from losing more weight. He will order her food at a restaurant (or from me) and if options are given he chooses based on his own preferences. He will cover up how little she’s eating and tell her she’s doing well after only eating a few bites for a whole meal. He wants her smoothies though they are high calorie. In short, the double dementia dance is pretty confusing around food and drink.

This evening I came home to find that once again he had not offered her the dessert I had put out for them because he didn’t want any dessert. Often he does choose to have dessert so it’s not consistent. If she had eaten dessert she would have been 100 calories closer to a good day. And because I’m not here some days I don’t actually know how much of her smoothie she ends up drinking, and chances are he truly doesn’t remember. So frustrating. At least I didn’t charge in to interrogate and lecture him… there’s no point now.

So, I have to figure out a system for getting calories into her that does not simply mean I have to be here more and more of the time. You see I currently have PSWs or Jane present with them both for 3 to 4 hours every day, except Sunday when Jane and I are both around quite a bit. This helps because it’s part of the PSW’s job to make sure she drinks as much of her smoothie as possible. Left to her own devices she would eat about 100 calories at breakfast, perhaps the same at lunch and even less at supper unless she fancied a good dessert. The smoothie would remain untouched all day. But if she downs that 1,000 calorie smoothie* the rest is okay. My problem is that the PSWs have mixed success with the smoothies and Jane not much at all. Jane relies on taking them out for supper on Fridays and has mixed success with getting her to eat enough dinner to keep her going. But the worst is when he is in charge, because then she really eats very little. He just cannot handle it anymore and my trying to improve his handling of her is no longer feasible.

So here I am inching forward another step on the continuing decline and I’m trying, with God’s help, to make it as gracious and gradual as possible. I’ll let you know what I come up with but it may be having to have PSWs twice a day, so that there is assistance with feeding at night and I will try to cover breakfasts more often myself. But if she keeps sliding under 1000 calories day, even heading back down to 500 where she used to be before we intervened, then that decline will become quite precipitous.

When we go away for 2 weeks at the end of August, I’m truly concerned about what state she’ll be in by the time we are back. Next is the discussion with the chosen Independent Living Facility on how they can ensure she eats. More about that soon.
Over and out from the food trenches of the double dementia dance!

* Our smoothies include 3 or more tbsp avocado oil (rich in nutrients and calories but not strong tasting), a full scoop of plant-based protein powder (texture not the best but high in calories and protein) or 3 tbsp of almond butter or peanut butter, 1 cup each of 10% table cream and ice cream and often some maple syrup and a juice extract (berries or pomegranate). They are delicious, nutritious and meet her daily requirements along with her supplements and the small amount of food that she eats.


Originally written June 28, 2018



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