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Will holidays always be like this?
Posted: Monday, December 2, 2019 5:39 AM
Joined: 6/24/2019
Posts: 73

I apologize for the very long post; it's been a rough week and I need to vent a little. MIL is ES (no formal diagnosis yet) and is still capable of doing a lot for herself. We encourage this, but I'm left wondering if we've given ourselves a false sense of reality.

MIL has had a rough week, thus the whole family has had one. It started when she started buying stuff willy-nilly at the grocery store for making Thanksgiving dinner. We'd told her several times the dishes that she was going to make but that didn't stop her from trying to buy whatever she wanted. Then she said she wanted to make a cranberry dish - I told her that most of us didn't care for cranberries but she could make a small dish if she wished (just not to make enough to feed an army). She texted her daughter that I 'forbid' her to make it. On Thanksgiving Day, I reminded her not to eat much of the sweet potato dish as it had a ton of sugar and marshmallows and she's diabetic...she ran to her room, crying, and wouldn't come when it was time to eat. DH told me that she was upset because I told her that she was 'forbidden' from filling her plate with what she wanted. I apologized for the misunderstanding and she came down and ate 2 plates full of food, then topped it off with pie. I'm sure she didn't take her blood sugar. On Friday she made herself scarce and stayed in her room a lot (except to go to the kitchen for pie). Then yesterday we made our dinner menu and grocery lists. MIL has been, until recently, able to somewhat plan for the 2 meals a week that she fixes for the family. We've had to help her with a grocery list as she'll just get things off the shelf without thought as to what she'll make. Well, yesterday, she had trouble thinking of something to make so we made suggestions to her. DH helped her with a list. We got to the store and she got pouty that DH was 'checking up on her' and said she didn't need to be supervised so he backed off. We got home and discovered that she purchased virtually nothing on her list, even the 2 items that she wrote down herself. To top it off, she has misplaced her bank debit card. She couldn't find it before we left for the store (so she used her credit card) and rebuffed our suggestions that she allow us to help her look. As of now she still hasn't found it, but DH accessed her bank account and it hasn't been used so we are pretty sure it's in the house somewhere.

We've also had to install security cameras around the house as we've suspected that she's been feeding the dog (the dog got sick a week ago and threw up chicken bones). We've discovered some very disturbing things she does in the kitchen - not using dish soap to wash dishes (just wiping them off with a dishrag and then putting them away), using a dishrag to clean up the floor and then using the same dishrag to wipe off dishes, feeding the dog, etc.

DH is wondering how much longer he's going to be able to not say something to her. She has anosognosia and so is unable to understand that she has a problem and she tells me every week that she's so thankful that she doesn't have dementia like her sister and brother. I know that she'll get very upset at the idea that we think she has a problem and will more than likely continue to refuse to go to a neurologist. I've told DH to just make an appointment and take her and let the chips fall where they may but he's reluctant to do that.

Posted: Monday, December 2, 2019 8:24 AM
Joined: 12/4/2011
Posts: 18489

Unfortunately yes and unfortunately there is no earthly reason to talk to her about the problem. You learn to work around it.
King Boo
Posted: Monday, December 2, 2019 10:44 AM
Joined: 1/9/2012
Posts: 3253

So, the splash of cold water that hits all of us unfortunately hit at Thanksgiving.

Your MIL is far, far more compromised that you realized; her planning, insight and empathy are gone, her emotional regulation permanently wrecked by the disease.  High drama of the moderate stage if very difficult.

Read up on some of Naomi Fell's work.  Very helpful for the dementia journey.

NO ONE should be  wondering about "talking" with MIL.  That thought assumes she has normal brain function and the ability to understand, process, learn and REMEMBER.   That ship has sailed, it is long gone.

It is now about avoiding buzz points and triggers; taking charge of her meals and taking her blood sugar yourselves.  Her care needs are no longer independent.

If she is extremely emotional and starts pitching hysterics, sometimes a geriatric psychiatrist familiar with dementia can assess to see if medication can help.   But care, redirection, and validation of her feelings (NOT arguing and teaching) can go a long way FIRST.

So, the battle about pie becomes not a lecture about her diabetes (which she no longer understands) but "That pie is bad, here is some tasty (sugar free) pudding that is great!"

Does she view the MD as an authority figure?  "Dr. Doe wants you to eat this tonight."

The grocery store is far too stimulating and requires too much executive function to be an outing any more.  

Posted: Monday, December 2, 2019 11:00 AM
Joined: 6/11/2019
Posts: 517

I'm so sorry that this is where you're at. just know you're not alone.

You definitely need to find a work around to protect your sanity and her security.(I still forget sometimes and start to argue then realize this is going to do nothing but stir the pot.)

My mom alternates between thinking there's nothing wrong with her … and then, in the very next breath, asking about her grandchildren. (I'm childless AND an ONLY child.)

Thanksgiving was a series of ups and downs for us. Christmas will likely be the same (hopefully NO worse!). Best of luck as you try to navigate. It's not easy for anyone -- us or them.

Rescue mom
Posted: Monday, December 2, 2019 12:45 PM
Joined: 10/12/2018
Posts: 1496

Will they all be like this? 

No, they get worse. (Sorry for gallows humor). But this sounds like another case of the frog in hot water, where the heat gradually rises—without the frog really noticing—until it boils.

Talking to her is not going to help. Them days are gone. She is, as others said, seriously impaired. Rational thought is not going to happen. Now you have to deal with what she is/does, or find ways to work around it. She obviously cannot go to the store alone now. It is a holy miracle, and something to be thankful for, that her finances and money are OK.

The sweets thing is fairly easy though. You just do not have any where she can get it. She cannot understand it’s bad for her. 

Posted: Monday, December 2, 2019 1:05 PM
Joined: 10/24/2018
Posts: 1077

Ginsamae, what an awful week. I'm sorry!

You've gotten excellent suggestions. I'd just like to add that none of this is "her fault" nor is she "doing it on purpose". You didn't suggest such a thing, of course; it simply bears repeating. 

Posted: Monday, December 2, 2019 2:08 PM
Joined: 6/11/2019
Posts: 517

Good reminder, zauberflote! It's easy to forget … especially when you're up to your elbows in excrement. And, especially if they're still cognizant on some level. (It's traumatic for them because they're both ashamed and confused by why they didn't know they were going.)
Posted: Monday, December 2, 2019 3:42 PM
Joined: 7/30/2018
Posts: 155

I feel like you are singing my song!  It is SO hard to admit what I KNOW is reality.  My LO is so loving and kind,  yet just on a different planet.  And yes, grocery lists (and menus for meals) have absolutely no value as they are not comprehended when they are looked at. And yes, you are going to have to do the blood sugars, because if you ask her, she will say yes, I did them and it's fine.  If you ask for a number, she will either a) make one up that sounds like what she remembers as normal or b) start ranting that you don't trust her and she's been doing this for x amount of time and knows what she's doing. 

Sorry I don't have better word for you, but thanks for letting me get this off my chest.


Posted: Tuesday, December 3, 2019 5:54 AM
Joined: 3/6/2017
Posts: 2216

Will holidays always be like this? No. Things will evolve over time. You may find she's less engaged and able to participate in the future and  more agitated by a change in routine or guests. You may even find she becomes more tractable around the perception that she is being controlled. 

It think it's time she was properly evaluated or at least have the bloodwork done to rule out treatable conditions that have similar symptoms. A complete workup would give you and your family a sense of where she is in the disease progression which might help you keep expectations at a level that engage but do not frustrate her. 

Even if she does get a firm diagnosis, it is generally not a good idea to discuss her issues with her. You'll have to figure out work-arounds to keep her safe and as calm as is possible given her personality.

Going forward it might be best to avoid situations that trigger her. If grocery shopping is a source of stress that results in agitation, perhaps someone else should go to the market for the household or order groceries for delivery. You could bring her on those trips where you need only a few staples like bread or milk. 

The diet/diabetes thing is more complicated. As the disease progresses, many PWD experience a change in the sorts of foods that appeal to them. By the middle stages, my dad was really only interested in sweets and found snacking preferable to sitting at a table with utensils. 

If she's insulin dependent, then care must be taken to limit access. If she can't understand and comply with the need to limit her sugar or doesn't have the short term memory to remember she already had a serving of pie then it makes sense to limit what you have on hand. Perhaps limit the number of side dishes that are basically dessert and send left over pie home with guests.
Eric L
Posted: Tuesday, December 3, 2019 10:29 AM
Joined: 12/5/2014
Posts: 1288

Hoo Boy.. I can relate about the "interesting" cleaning methods. My MIL would use a paper towel (or napkin, whatever was closest), put a little spit on it and wipe spots up off the floor with it. She did the no soap thing with dishes and would use the same nasty rag on the dishes, the floor, counters, etc. I do most of the cooking and I'm generally pretty fussy about cleaning up any juices from raw meat, etc. That said, there is always a chance that someone will miss something, so using the same rag for everything in the kitchen is asking for trouble.

She insisted on cleaning up the kitchen every night after dinner. It was part of her routine and I also think it was her way of helping us. After a while, it wasn't very helpful. A 15 minute job would take an hour. Most of the time, we would have to go in and fix things. With 3 young kids and trying to prep for work and school the next day, it was time that we didn't necessarily have.

What I ended up doing most nights was putting the kids' lunchboxes on the counter after dinner. When she attempted to clean up, I would tell her "I'm going to pack lunches really quickly. When I am all done, I'll let you know so you can clean up the kitchen". She'd usually go play some games on her computer and the by the time she remembered or got the impulse to clean up, I would usually have the kitchen cleaned up. I left the lunch boxes on the counter (even if they were already packed) until I was all done, so if she did come wandering into the kitchen looking to clean, I would just tell her "oh lunches still aren't packed. I'll let you know in a few minutes".  Most of the time, if she saw the kitchen clean, she figured she had already done it. Believe it or not, it worked. Before I came up with the "lunch box excuse", she'd get really upset with us if we didn't let her clean.

For us, it was a safety issue for her. The bending over and spit shining the floor was unsafe for her (aside from being gross). The possible cross contamination with the same rag was unsafe for all of us and not using soap on dishes that may also have had raw meat on them just wasn't safe either. And quite frankly, it was also a time issue. Even if she had been doing everything safely, I couldn't wait an hour to get into the kitchen. It was made worse because we had to do the job all over again anyways.

Sorry, this is just a really long example of how you have to distract and redirect our LOs sometimes.
Posted: Tuesday, December 3, 2019 11:15 AM
Joined: 10/9/2014
Posts: 1091

Getting a diagnosis is helpful, imo, even if the options for treatment are limited. Depending on what is causing her dementia, she might benefit from medications. It helps to know the options. I understand that this will be for the family, as she will not be able to process the information. 

When you first encounter some of the behavior, it's difficult to understand why it's happening. It took me a while to really get how it was brain damage. She isn't being difficult or doing things to intentionally be annoying. Once, I accepted it, it was easier to intervene where I needed to and to let other things go. 

While things may get less troublesome in one area, they get more difficult in others. She may not act out with cooking, shopping, etc., but, she might start constant repetition of questions, that goes on endlessly and no amount of answering will stop. Or she might develop incontinence which creates a whole other level of constant care. So, it's different issues, but, they don't really get easier to address. In fact, they get more challenging. So, the holidays will change.  There usually isn't any improvement in a PWD, unless, like with my LO, she started falling A LOT.  She fell and got so many fractures, that she went to a wheelchair. Once in the wheelchair, she didn't fall as much and actually had better mobility, because she could propel herself with her feet around in the wheelchair with ease. But, this also allowed her to have access to things on her level, so she could pull things off the wall, hide items, try to exit the building, etc. 

There are some excellent suggestions here.  I learn something new almost every day. 

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