What can I expect when I visit my cognitively impaired mother?
May 20, 2019 11:34 AM   Subscribe

My mother was diagnosed with Creuzfeldt-Jakob disease. It's progressing rapidly. We're flying to Australia from the UK next week so she can meet our 8 week old daughter while there's still time. I have no idea what to expect or how to interact with her.

My mum is well cared for by my sister, an ICU nurse who has organised absolutely everything, and I'm eager to take on some of the caregiving responsibilities while I'm there to give my sister a very well earned break. But lately my mother has declined sharply. She's easily confused and disoriented and very forgetful. For instance, when my brother in law went to her house the other day to pick her up she thought my sister was a baby sleeping in the other room.

But, honestly, I'm frightened. I can barely bring myself to call her. She sounds very breezy and chipper on the phone, but not like herself. She doesn't ask about her grand daughter, and she gets very agitated and angry when I ask about upcoming medical appointments, complaining that my sister is exaggerating or overreacting.

Honestly, I have no idea how to mentally prepare for this visit. My mother is an air force veteran, she worked in law enforcement, she took up powerlifting, she's always been very sharp and proactive and independent. Now my sister is looking into full-time care as it's starting to be dangerous for her at home. The person I'll be meeting at the airport in Australia will not be the woman I know.

People who've had a family member with dementia - what should I expect? How can I interact with her in a way that will minimise confusion? Is there any way to make phone calls less... harrowing? If you're a carer of a person with dementia, what practical things could a visiting relative do to provide respite?

Apologies for the word salad, it's an overwhelming situation and I'm not coping particularly well.
posted by nerdfish to Human Relations (13 answers total) 6 users marked this as a favorite
Many, many relatives with dementia here, and just helped a friend whose mother had to go into care. One of the strategies that has helped (it's not universally embraced, but the family members I know who have dealt with this alongside me find it helpful) is to "live in their world" with the dementia sufferer. For things they may think (that it's another time, that people who have died may still be around, that they're at work instead of home), finding ways to steer the conversation so that you're not constantly battling with what's true and what's not can be much less stressful on the person whose memory is affected. In many ways, it's a matter of picking your battles, but if your Mom thinks she's at work, or waiting for a ride back to her childhood home, or something like that, it's often easier for all involved to stay in her reality than to enforce what's really going on.
posted by xingcat at 12:17 PM on May 20, 2019 [20 favorites]

I am so sorry this is happening to your family. Rapidly progressive dementias like CJT are horrible. One thing that I see a lot with adult children of people with dementia is that it is frightening and upsetting to them to see their smart, capable parents confused and disoriented, and they try to force the parent to remember things. This in turn is upsetting and frightening to the parent.

Your goal is not to minimize confusion, your goal is to have a pleasant visit. It's okay to prioritize calm and contentment over orientation. You don't need to lie, but there's no need to insist on full disclosure every time if she doesn't remember someone or wants to know where someone is who is dead, absent, or unrecognizable. You can make phone calls less harrowing by not asking your mother to try to remember the details of her medical care--she's getting angry because she can't remember them, trying to play them off as unimportant, and then getting mad when you persist in asking about them. It's probably better to just go to your sister for those details now.
posted by The Elusive Architeuthis at 12:22 PM on May 20, 2019 [57 favorites]

when she came to visit my grandmother would repeatedly point at the same picture and ask my mother who painted it.

a family friend kept asking me a question that I'd previously answered.
posted by brujita at 12:33 PM on May 20, 2019 [1 favorite]

Arrange to have someone, a social worker preferably, that you can vent to/process your feelings with. And lower your expectations of the visit, no, even lower than that: you want to have calm times together where the talk is mindless small talk/how is the weather type. Bless you for giving your sister a break - this all hard, especially with an infant.
posted by saucysault at 12:52 PM on May 20, 2019 [5 favorites]

I’ve had good conversations with my military vet family member about places he’s lived (sparked by the fact that he can’t remember where *I* am living now for more than about five minutes, and keeps asking). But since he spent his whole career in the service, the idea of me bouncing around in my youth doesn’t seem to phase him. This may not be a good topic of conversation with your mom, but just felt like I should note that there is the possibility you can have pleasant, light conversations about the past and not just the future. But for your own sake, talking about events you’re not personally familiar with may be less upsetting, because you won’t be immediately aware if your mom’s getting some (/lots of) details wrong.
posted by deludingmyself at 1:00 PM on May 20, 2019 [1 favorite]

Uh, that should be “about the past and not just the present.”
posted by deludingmyself at 1:02 PM on May 20, 2019

Dementia varies so greatly from person to person, your sister is going to be the best person to ask these questions too. Things to ask what has your mother found found calming? What has she found destracting?

Many people with dementia really enjoy enjoy babies (even if they can't take care of them & don't quite know who they are) but you won't be certain about that until you are there.

There is a ton of repetition, just go with it, they don't quite know it. Be reassuring, try to provide distractions and redirection for more active individuals. They can pick up social cues, so calm voice, reassuring smiles as much as possible. They may get that your are crying but not why, or angry but not why etc which just adds to their stress. They don't have the context to understand when your upset about them, which of course is heartbreaking for you, but trying to process it with them just doesnt work.

Activities for the person can be helpful for example: ask for help with folding the laundry, other chores that can be done sitting the couch safely. It doesn't matter if the task can be completed (it may not) but if the person thinks it's helpful and stays engaged it's good for them. Of course, if they know they aren't doing the task, this can provide a source of frustration, so you'll have to feel this one out. But many people with dementia have activity stations / boards for tasks that they want to complete . People get creative with this.

Routine is said to be helpful, so whatever the routine currently is try and stick to it as much as possible for your sister and your mom.

Depending on the progression your mother may need prompting to initiate and or change tasks. For example, she may walk to the bathroom, and go but then forget to leave again. She may not recognize hunger cues. It is really startling, but there are tons of everyday things that have lots if steps and where she is at will really impact her ability to do those tasks.

Just as importantly take care of you too, this is hard hard work and you have a very young child.
posted by AlexiaSky at 1:03 PM on May 20, 2019 [7 favorites]

This is very hard! I have several family members/friends of family who have gone through similar (including myself with my grandparent), and I really agree with this: if your Mom thinks she's at work, or waiting for a ride back to her childhood home, or something like that, it's often easier for all involved to stay in her reality than to enforce what's really going on.

I am not familiar with CJT as opposed to Alzheimer's, but in my experience, truly, just going along with the sick person's train of thought makes everyone more relaxed -- kind of like when you're dealing with someone who has a very high fever. You can't talk them out of the fever brain, you just need to be....soothing and agreeable to them. In my experiences, the sick person is sometimes better about talking about the long-ago past rather than the recent past. You should expect to answer the same question multiple times, or hear the same story several times in a row. After a certain point, my grandparent thought I was my mother (who I VERY much resemble), and I just let them. Getting angry or frustrated with your mother won't fix this or help, so truly just try to go with her flow. Try and stay upbeat and calm. (Of course, all of this is variable, too -- you might show up and she might seem basically okay other than a few bumps in the road, for now. It's also probably going to change throughout the day; evenings are usually worse.)

I am very VERY VERY sorry you and your family are going through this. I do think that, when you feel up to it, looking into therapy for yourself to help yourself process this loss, because it is a huge loss, would probably help you deal with all these very normal emotions you're having. It's super normal to be scared and angry here and it's a lot to work through. Good luck, and it's good that you're going now.
posted by Countess Sandwich at 1:11 PM on May 20, 2019 [3 favorites]

It sounds like she's still sharp and proactive, just in a new way. If she has the creative wherewithall to recast existence in a way that makes it less scary and painful, help her: it's a gift. My grandmother did this, gloriously effectively. She was always creative, and never more so than at the end of her life, which she lived in a constant dream that she was about to get on an ocean liner and sail from the US to England, as she had done as a girl just out of high school. She used her always-considerable creative powers to ease her own passing, and all of us were eased along with her, because she was so evidently happy and full of anticipation. It was bittersweet because she was in a time when none of us existed, but we were pleased that she could check out of real time and go back to when she was a vibrant teenaged girl with all the good things in her life just about to happen.
posted by Don Pepino at 1:56 PM on May 20, 2019 [14 favorites]

Expect to grieve. This is loss... It’s painful when it takes time for dementia to develop, and for a person to get their head around the idea. This will be a shock. Your sister has professional tools to help her cope by providing practical support, and she’s been busy adjusting to everything. For you, it’ll be new, it’s a good idea to have people you can talk to about it - don’t be shy about calling your friends at home for comfort (if your sister happens to be in a different place emotionally).
posted by cotton dress sock at 4:26 PM on May 20, 2019 [2 favorites]

Agitation and anger are really common responses in cognitively-impaired people when pressed on a subject that is confusing or frightening, and sometimes it's specifically because those are the places where they most feel the cracks. Dementia isn't a clean unmooring from reality, and sufferers can spend a lot of time anxious - like horror-movie anxious - because they sense something is terribly wrong even if they cannot articulate or analyze it, and push-back from the people around her isn't going to make her get better. Asking her questions about her doctor's appointments or trying to make her understand things that she doesn't because her brain can't anymore isn't going to save the day. This isn't a personal failure - hers, your sister's, yours - it's a systems failure, and all you can really do is try to keep her happy and comfortable and safe.

Given that, and the fact that you are probably making this trip to make your last memories, and 100% given that this is gonna suck worse than nearly anything no matter what, you might as well decide you'll worry more about her being happy than being right. Like, if she thinks a beloved pet is still alive, don't put her or yourself through telling her for the first time a dozen times that her dog is dead just because her temporal disconnect is an uncomfortable thing for you. Unless you need to intervene for immediate safety reasons (and if you can do so by benign redirection, do that), roll with it. Ask her about her past, if those topics seem to put her at ease, do your best to enjoy her company and look like you're enjoying it. If you can identify something you think she might like to do, try to arrange to do it together in a way that's safe and not overly stressful. Take photos, take photos together; you're not going to want to look at them for a long time but then maybe you will, or your daughter or sister will.

Your mom was still all those wonderful things, nothing can un-do that. And she is still your mom, just in the grips of a fucking awful monster, and I think what you do at this stage is just be with her wherever she is so she's not so alone. Don't correct, don't be outraged when she does exasperating things (that would likely be pretty normal in some other context) or when she constructs baffling patches for the holes in her ability to process. That is a thing that strong people do when confusing things happen; we have an incredible drive to cope with even the most extreme circumstances of human existence.

As much as you want to help your sister, if she's the primary caretaker you should treat her caretaking boundaries similarly to what you expect around being the caretaker for your daughter: ask how you can help, don't second-guess or disregard her policies and procedures, if she says don't do XYZ because it makes things worse don't do those things, and if she says ABC is absolutely necessary make sure you do those things. Ask how to help, do those things. Being the caretaker fucking sucks, it means not being able to keep things cool and groovy all the time, it means having to fight with her and take the brunt of the paranoia and rage, it's a real case of future PTSD she's living through right now. You will be traumatized too, but respect that your sister is dealing with horrors you're not. She may want you to not be exposed to them, and you can choose to push back on that but choose your battles wisely. You and your sister will have many opportunities to process this in the future.

I'm sorry you're having to go through this. I hope you're able to find some versions of peace during this time.
posted by Lyn Never at 6:24 PM on May 20, 2019 [23 favorites]

When your mom says or asks something for the hundredth time, it's only the hundredth time for you. It's always the first time for her. Depending on how bad things are, she may not recognize you. Fortunately that only happened a couple of times with my mum. But she knew she knew me. When she said "I know you...."I didn't say "Of course you do! I'm your daughter!" I said yes, we've known each other since I was a little girl. And that was enough.
posted by kate4914 at 8:20 PM on May 20, 2019 [1 favorite]

In conversation with my mother, who was the primary caretaker for both of her parents through their (cancer) declines, said that one of her go-to conversational gambits was asking how to do things or about things that she knew they knew well. How to frame a painting, how to fix a lawnmower, the farming methods they used as kids (on a farm), what it was like living on the base in Germany, winters in Omaha, etc. As she put it, they weren't highly instructional and she'd heard a lot of it before, but it was nice to hear them talking animatedly about something they remembered vividly, and it often gave them a sense of being helpful or informative.
posted by Lyn Never at 10:16 PM on May 21, 2019 [5 favorites]

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