Talking to dementia dad about grandchildren he doesn't know exist

March 24, 2021 9:06 PM

My father had a rapid onset of dementia and for the past 6 months has been in an aged care home. My siblings have visited him but I have only spoken on the phone and kept it light. He has lost for the most part the last 20 years. I am the only one of my siblings with children.

I'm in my forties and last conversation he reference me being at university still. I'm pretty sure he won't be able to recall that I have children.

How best do I talk to him about them or if at all?

I have photos of him with them as they were only toddlers the last time he saw them. I am 3+ hours drive from his aged care home and unsure how often I can make it to see him. And I also wonder if I should bring his grand children one day.

Any hints or tips on interactions would be appreciated. Thanks

posted by dinoworx to Human Relations (21 answers total)

If your relationship with your dad was generally good when he was more himself and if he liked your kids or liked kids in general, bring them and explain who they are. He will likely enjoy the children, and they'll get to have a relationship of a kind with him. He may decide all of you are someone else that fits with his mental timeline (and may call you all by names based on who he thinks you must be), or he may seem to understand who you are, but forget immediately after or during the visit, so be ready for that. Go early in the day if you can; he'll be at his most lucid in the morning.
posted by shadygrove at 9:29 PM on March 24, 2021 [8 favorites]

The only time I remember seeing my great-grandmother is from when I was very young and she did not know who I was. It is still a fond memory.
posted by Quonab at 9:38 PM on March 24, 2021 [17 favorites]

I'm sorry that you and your family are going through this. I think the first visit is you alone, or with your siblings; seeing you as you are now, in your forties, might help him place you in the present (not still in university). (If you can video chat with him now, try that, too.) Then note how the conversation progresses when he has that visual cue.

During your visit, bring the older photographs he's in as well as recent ones of your kids, and see how that goes. (How old are your children now?) Recording a video greeting from them might be nice for their grandfather and for the kids, and you could record his response (you'd only relay it if it's positive).
posted by Iris Gambol at 10:12 PM on March 24, 2021

Best answer: With dementia, you are really meeting them at where they are at in their minds at any particular moment. It's hard to predict how any particular person with dementia acts to knowledge that they don't remember- or people that they don't remember. Emotional states are impacted heavily by dementia, some people get more paranoid and angry, but others more passive, others more child-like. Basically, the experiences of dementia vary so widely it's hard to give a good answer. And even if one time he takes the conversation well, the next time he might not.

He may be really excited, if you mention your kids . Or he might think that you are pregnant or he might argue with you or think its a joke, or he might not respond at all, as if it is a meaningless statement, or he might be rapt in attention and want to know many things about them. All possibilities are available.

My advice when working with people with dementia is to be very aware of their responses to your topic of choice, (or let them chose their own topics if they are able) and stick to whatever seems to be working that day. It is a hard process.

Sometimes people with dementia can have moments of insight and realize that they are missing big parts of their world and end up in deep grief or sadness, but its hard to tell when or even if that will happen.

Take gentle care of yourself too, if there is something you need to say, or something that you feel really uncomfortable saying it's okay to honor that and do what you need. There are no right answers.
posted by AlexiaSky at 11:01 PM on March 24, 2021 [36 favorites]

When my dad had dementia (in his final years of life) he didn't know who I was, but I visited regularly and he always seemed reassured to see me. In terms of conversation, he became agitated with things he didn't understand, or when he seemed to realise that his grasp on things was slipping away, or if someone expected him to remember something that he didn't. My mother struggled with this and tried to 'remind' him of things, which just seemed to upset both of them.

So, with the goal of having a pleasant visit with my dad, and of not agitating him or causing stress, I chatted with him about easy topics. Sometimes we talked about his childhood, sometimes he brought up random things and we talked about them. Even if he got the 'facts' wrong, I just chatted away and smiled and laughed and asked some more easy questions. He also enjoyed anything with pictures - we found a series of large hardcover books with photos of science-y things like volcanoes, the rain forest, oceans etc. He seemed to enjoy looking through the images with me.

I'm sorry you're going through this. It's really hard. Don't get hung up on accuracy or expect him to know your kids; it will cause both of you stress and discomfort. You probably won't be able to connect with him in the way you previously did, but you can be gentle, and kind, and provide some ease in his life as it is now.
posted by lulu68 at 12:10 AM on March 25, 2021 [25 favorites]

We have been on a dementia journey with my Mother and I'm sorry you are going through this.

I have good conversations with Mom. As lulu68 said it's time that is the value. I don't ask if she knows who I am, remembers all family members or really any tough questions that may cause her stress that she can't recall specifics.

If she asks about our Dad I will tell her passed away. She will absorb this but doesn't get upset or sentimental. We pivot and talk about memories of thew two of them together and other family times.

Afternoon has been her brightest times not mornings. I am surprised she can recall certain items of the past that I didn't even remember. My struggle to make her cinnamon roll recipe is a fun chat that she has asked what temperature I am baking them or if I was properly preheating the oven.

We still try a morning here and there to see if there is a difference but afternoons still are the best.

Low stress talk, allowing her to take in what I am saying and realizing I will most likely be leading the conversation have all been things that make the time go smoothly.

I hope the time you spend with your Father proves beneficial to you and your family. My hugs from my Mother on arrival and before I leave are the strongest ones I have ever received.
posted by ashtray elvis at 4:55 AM on March 25, 2021 [6 favorites]

My aunt died in 2001; my grandmother died in 2008. My grandfather developed dementia to the point where he was in a memory unit by 2013. He repeatedly brought up his daughter and his bride (they were married 60+ years) and asked where they were. The kindest thing we did (on the advice of the staff) was to tell him they were doing just fine where they were. He passed away in 2015.

The easiest thing to do was just be with him, let him direct the conversation. We often watched whatever show was on together and had a chocolate bar. And that's ok. My dad can laugh about some of the conversations ("any port in a storm!" about using a sock as a handkerchief) now instead of just crying about my grandfather.

So I guess I'd suggest not trying to plan conversations, maybe not assuming he knows who you are. I'd bring current pictures of your kids as a fun idea if he asks about your life, but it might be in an abstract manner like you're just a nice person, not necessarily HIS nice person. I think it's ok to bring the kids because everybody in the care home would light up at them. I would not bring them the first visit, though, and I'd definitely prep them about the situation. (This of course is at your discretion and depends on the kids' ages.)

Dementia is hard. I'm sorry you're going through this.
posted by Ms Vegetable at 5:29 AM on March 25, 2021 [5 favorites]

If you can find his favorite pieces of music for him to enjoy and share with your kids, that can be a way to connect. It's really difficult to lose memory/ identity and people get frustrated and frightened, but music endures. Still, shorter visits, let him lead the way as far as what you talk about, but nudge for stories about his early life.
posted by theora55 at 6:30 AM on March 25, 2021

Forgive me if the metaphor I'm about to use seems callous but it's how I managed to get through a few years of conversations when visiting my grandfather:

I approached everything as if it were a kind of improv-theater. "Yes, and..." is the name of the game. There's nothing to be gained from saying "No, but..." By affirming him, his observations, and following up with stuff that is relevant to the immediate moment I was able to have many pleasant conversations with him before he died. We certainly didn't talk to him about anything deep, though. It was a lot of talking about the weather and how nice that man on TV seemed.

He recognized me only rarely. Usually I was my Dad. He was a huge classical music fan so I would often bring my small boom box and then we'd listen to Beethoven or Mozart. He LOVED it when I brought along a tape of Carmen. That was his favorite.

My main goal was to bring him a smile and tell him that I loved him.
posted by nathanfhtagn at 6:38 AM on March 25, 2021 [17 favorites]

The current advice for dementia and Alzheimer's patients is to not force them to live in reality, but to go along with theirs. Bring the kids, tell him they're your kids, and go from there. This time is really for the children, not for him. Get him to talk about his life, what he remembers. It doesn't matter if he knows the kids are his grandkids, they know that's his grandpa, and hopefully he'll make more memories for them, and they'll be able to learn more about him
posted by FirstMateKate at 7:28 AM on March 25, 2021 [5 favorites]

Keep in mind that people with dementia will sometimes recognize that they feel something for their family members but not be able to identify them correctly. It is quite common for them to conflate family members. The bones under the skin, the voice, the tilt of the head, the gestures, the pattern of the hair may be familiar enough that the recognize someone is a member of their tribe. This means that when they try to remember who someone is they can come up with false matches.

Your father may not know who you are or who your children are so he may call you by the name of his brother, and think that your children are his children. This is a good thing, if it happens. It means he got a visit from family. Indeed, we sometimes long for people who have changed and grown or died. In our dreams our brothers are still young and our parents are still alive. There is a small chance that you can create that experience for him and let him travel in time.
posted by Jane the Brown at 7:32 AM on March 25, 2021 [11 favorites]

I'm sorry you're going through this. It's really hard.

If you do end up bringing your kids/his grandkids to visit him, please prepare them for the fact that Grandpa might not know who they are. As Jane the Brown says, sometimes you can still love someone even if you don't know their name, and there are lots of ways to show love.
posted by basalganglia at 9:04 AM on March 25, 2021 [1 favorite]

I would strongly advise visiting him without your children before bringing them, mostly for their sake. I have very fond memories of visiting my great-grandmother when I was a small child, but I also have quite upsetting memories of the first time I visited her after her Alzheimer's became serious. She was anxious and confused and upset by our presence and misrecognized me as another family member, and the whole experience was quite frankly terrifying. You'll want to get a sense of what his emotional range is like and how visits feel before introducing your children to him in this state, especially if they are young.
posted by dizziest at 9:14 AM on March 25, 2021 [2 favorites]

Initially my mother would bring my brother's children to see her mother in the nursing home, but that stopped when my grandmother started to get really upset and confused, or go into a state of withdrawal in reaction to their presence on some visits. It's really hard to know how the person will react; your father's care team might be able to provide more insight (like how he reacts around children in general, if he has encountered any so far).

Also, I'm not sure how old your children are now, but if they are young enough to be cranky after long car rides, or if there is no easy way to have them be "somewhere else" if the visit goes a bit off the rails, those are also factors I'd consider in whether to bring them or not.
posted by sm1tten at 9:48 AM on March 25, 2021 [2 favorites]

I'm so sorry you're navigating this with your dad. If your children want to see him, and you want them to know him, bring them, but prepare them that he might not be sure who they are. There are some good resources for helping kids learn about dementia (and they might be helpful for you, too!)

I would go through your visit, as others have said, by staying in the moment. Start off by introducing yourself, "Hi, dad, it's dinoworx! Dinoxorx Jrs and I are so glad to see you!" and take it from there. He might be able to connect that those are your kids or might not; might connect that they are your kids without connecting that they are his grandkids. It might also change during the visit; he might understand they're his grandchildren at first and then after a period of time ask you who you or they are. If he asks, say they're your kids, don't say "remember, I told you..."

Just keep it light as you can and don't expect the worst--kids and people with dementia usually get on really well, because they're both pretty good at operating in the present.
posted by assenav at 10:45 AM on March 25, 2021 [3 favorites]

Have been doing this for a long time with my mom who went from mildly cognitively impaired to bedbound and non verbal. My advice is: Keep your expectations low and do what feels best FOR YOU to allow you to connect with your father.

So if you want to bring your kids, bring them! I settled on bringing my daughter sometimes (this is pre-COVID), but it would start to stress her out so I didn't bring her all the time. Over time my mom definitely forgot who my daughter was, then who I was, although I think I'm somehow familiar to her, but ultimately that became unimportant. So you're right, he may forget your kids. If you can be with him knowing that, do it. If not, don't, or do it minimally.

Basically you're going to have to keep re-adjusting, but he's not going to be able to meet your needs in any way, so you have to while you do this. For my mom: Her needs are for a kind person to connect with her at her level (earlier it was looking at photo books together, listening to music together. Now it's my feeding her or holding her hand.)

My need is to feel some connection to my mom - so sometimes I'm just sitting next to her listening to a podcast or reading. That's the best I'm going to get.

This whole process is really , really, really tough. Be gentle on yourself and focus on what you need to do to care for your own mental health and your kids.
posted by latkes at 11:15 AM on March 25, 2021 [1 favorite]

Maybe you're bringing your kids, they're spending some time with their grandfather (at whatever time of the day is best given his particular needs), and then they're with your siblings for the remainder of your visit with your dad. I've also had the experience of elders with dementia becoming very disturbed and agitated around children, and I think your siblings can be a resource here.
posted by Iris Gambol at 1:22 PM on March 25, 2021

We kept visiting with kids when dementia hit. The kids have a tangible memory and the physical experience of being with them -there is less wondering. Listen for a good day/timing. Prepare kids by saying that conversations might be different - repetition, them being mistaken as a younger version of you/a sibling, which is flattery if you have childhood photos as comparison, but might be less cool if they take it literally. They can ask questions - favorite dessert, card game, what they liked to do for fun. It can be an experience of family love and compassionate dignity...as we had to nudge our older kids not to automatically correct/remind of repetition.
posted by childofTethys at 1:44 PM on March 25, 2021 [1 favorite]

> I also have quite upsetting memories of the first time I visited her after her Alzheimer's became serious

I want to second this. Unfortunately, my strongest memories of my grandfather are him yelling at me in a language I didn't speak. If your father won't know who they are, any visit would be for the kids' sake -- and it might not be worth it, for them.
posted by The corpse in the library at 8:41 AM on March 26, 2021 [1 favorite]

I also have quite upsetting memories of the first time I visited her after her Alzheimer's became serious

Thirding this. Please check in with the kids before scheduling a visit and don't force them to do this. It can be frightening and upsetting. Go at their pace and if the kids seem upset, don't make them go again.
posted by all about eevee at 9:46 AM on March 26, 2021 [1 favorite]

On a note that I didn't notice whilst scanning the comments: Has your father ever been tested or treated for a UTI since this "rapid onset"? In my experience as an registered nurse, rapid onset dementia is often caused by a urinary tract infection, and is not a true physiological dementia. If your father is living in a care home (I've worked in a number of them), their priorities are not on acute care and testing - they are dealing with the practicalities of caring for dependent residents who have varying needs with mobility, pain relief, toileting & bathing, eating, etc... and they will often get caught up in more personal levels of care. They *should* be aware that if someone's cognition has changed or declined rapidly to consider that the individual could have a UTI, but with staff scheduling, a person may not get adequately introduced or develop a relationship with a resident to be able to tell what is "normal" cognition - and then their understanding of a resident's "normal" becomes skewed to the lower standard.

TLDR: if your father has not yet been checked or treated for a UTI, please insist that this is done. Rapid onset dementia is often caused by a urinary tract infection that doesn't have any other symptoms - and it is reversible if this is the cause!
posted by itsflyable at 12:21 PM on March 26, 2021 [2 favorites]