Dying grandparent, a toddler, and Thanksgiving
November 18, 2016 8:04 AM   Subscribe

My father in law has end stage terminal cancer and intends to die at home--talking days/weeks. My wife and I will be going for a Thanksgiving visit in a couple of weeks with our 2.5 year old, who loves her grandfather very much. He is not going to be in good shape, and may well pass away while we're there. Help?!

Grandfather is very gaunt, confused, has lost the ability to swallow, and is sleeping almost all the time. He's a shadow of big guy with a big personality that we all want to remember. It is sad for all, and my MIL is exhausted from caregiving.

Daughter loves her grandparents very much. She knows her grandfather is sick, but obviously does not understand death. She is pretty empathetic, though, and will understand the tears and sadness that will come with his passing.

My wife is torn between sadness for her dad, wanting to protect her mother and our daughter, frustration with some care decisions, and more--the full gamut of emotions you can imagine.

It's sad for me too, though I feel my role here is as care and love giver to my wife, daughter, MIL, and the rest of the family.

That said, I have no idea what to do, particularly with respect to this visit. My wife and I had planned on us not taking our daughter to see her grandfather in his final days, but we're setting ourselves up for that. In particular, we didn't want her last memories of him to be his state in extremis, and we don't want her to forever associate being "sick" with death.

I expect some of my role will be to take my daughter out of the house, but that will also mean that my wife doesn't have our support.

I'm at a loss how to navigate this trip to give the most support to those in need, while not traumatizing my daughter (e.g., sadness and loss is part of life, but I wouldn't want her to be the one to discover grandfather had passed, or to watch him collapse, etc).
posted by anonymous to Human Relations (28 answers total) 1 user marked this as a favorite
I know everyone will make a different call on this, but I think 2.5 years is way too young to be put in this situation if there's any way to avoid it. I remember being with my grandfather when he passed, but I was in high school. I was grateful for the experience to be with him, but I think I was at an age when I could actually process what was happening. For context, when my grandfather on the other side of the family passed, I was in early middle school and my parents did not take me to hospice after the point when he could no longer recognize people/respond. I would suggest that your wife goes to be with her parents, but you make other plans with your daughter for Thanksgiving. Or, if your wife really wants you to be there, perhaps your daughter could stay with other relatives or a family friend for the holiday. Honestly, she is so young that she is not really going to remember who she spent Thanksgiving with as long as you don't make a huge deal about it.
posted by rainbowbrite at 8:12 AM on November 18, 2016 [7 favorites]

While kids ideally should have the facts of life presented to them in a fashion that is developmentally appropriate, death is a part of life and I don't think it's done our culture any good to try to wall it off. Face it, unless you're going for a closed-casket funeral your daughter is going to see him dead. Let her see him one last time when she can believe he hears it when she tells him she loves him. It doesn't have to be a lengthy encounter.

That said, is it possible you could stay nearby, but not actually in the house? Your concern about not needlessly traumatizing your daughter is reasonable. Your MIL probably also does not need to be worrying about looking after guests in this sad time.
posted by praemunire at 8:13 AM on November 18, 2016 [24 favorites]

My great-grandfather died under similar circumstances when I was about your daughter's age. I have no real memories of it now, and it has never affected my life, personality, or psyche. According to family lore, I did not in any way understand what was going on. I have no memories whatsoever of my great-grandfather, let alone specific memories of his condition just prior to death.

On the other hand, it being a great-grandparent meant that there were plenty of people around to take care of all the things that need to be handled at the end of a person's life. That didn't fall to my parents. If the two of you will be the only stable adults around as all this goes on, I think it would be a good idea to have a plan for the logistics of who will care for the toddler in order to free up the other person to make various arrangements, all while that person feels supported and not completely alone.
posted by Sara C. at 8:20 AM on November 18, 2016 [8 favorites]

I am so sorry your family is going through this. We dealt with something similar and I can relate our experiences. My dad also died at home (through hospice), and we took my 3.5 year old daughter and 4 week old baby to see him. My dad passed about six weeks after our trip. He was disoriented, non-verbal, had a feeding tube, looked gaunt, in bed, etc.

My very empathetic daughter was not phased one bit. We figured that she would take her cues from my husband and I, so we tried to be completely normal and not at all phased by his condition. We talked to him, danced for him, etc. We did not require my daughter to spend more time with him than she wanted. My husband frequently took her out to the park, etc. Oh and we stayed at a nearby hotel instead of at the house.
And then when my daughter wasn't around, I would hide in a bedroom and cry my eyeballs out. It was the most unhealthy level of compartmentalization.
The hardest point was when we first walked into his bedroom. I prepared myself for the absolute worst, so that when we came in, I could say, "Hi Dad" and be normal enough to not freak my daughter out.

We talked about papa being very old and sick, and I clearly didn't completely hide being sad from her, but ultimately she looked to my husband and I for how to feel.

There's loads of good advice on metafilter about how to talk to kids about dying and death, but I emphasize that you should only answer the questions she is asking. Don't offer more information that your daughter is specifically asking for and warn your partner that questions may come up months and months later at the most random of times.

ETA: we obviously talked about papa dying and missing him and being sad...I don't want you to get the impression we glossed over all that...
posted by avocado_of_merriment at 8:22 AM on November 18, 2016 [16 favorites]

As an anecdote: My cousin was just about 2.5 when my grandmother died. Grandma became ill just before Christmas and was hospitalized throughout the holiday. The rest of the family lived in town, but I was away at college and traveled in and my aunt and cousin lived in another state and traveled in as well. Grandma made a bit of a recovery, enough to become lucid and have final conversations with us all. I went back to school and my aunt and cousin stayed for the weeks that followed. My little cousin, along with the rest of the in-town family, spent a lot of time at the hospital over those weeks. The hardest thing for her was being away from her dad and big brother who had to go back for other obligations. She brought a ton of joy to the rest of the family and pretty much went about her two-year-old business. She was in the room when my Grandma died and summed the experience up for us by saying "Grandma was sick, then she breathed like this (mimics slowed labored breathing) then she turned yellow and she died. And she is not sick anymore." She was not upset, she was not traumatized by the experience and I am glad that my Grandma had her and others who loved her there. My own children have visited with ill people and have attended wakes and funerals and are ok. Children witnessed illness and death up close for thousands of years as a natural part of life. It is only in modern times that we draw a curtain over that. I'm not sure it is healthy for any of us.

My concern would be more for your wife who will be doing the difficult work of saying goodbye and grieving. It can be hard to feel pulled to take care of your child while you are also pulled to spend as much time as possible with her father and support her family. I think your being there to unobtrusively bring your daughter in and out as needed would be best.

I am so sorry for your father-in-law's illness and am hoping for peace and love for your family as they face the end of his life.
posted by goggie at 8:26 AM on November 18, 2016 [14 favorites]

This is a tough question because you can't really predict what your daughter's reaction would be until the moment itself. My youngest nephew was 6 when his mother died and she was at home almost to the very end. He was okay with everything up until about two days prior where he was a little scared of his mom's strained breathing. He's forgotten that now, but it was very upsetting at the time for everyone involved.

Honestly, if there is any way you can bring your daughter to visit him and then entrust her to someone else's care outside of the home so that you and your wife can help your MIL, I think that would be best. Or maybe your MIL could take her out of the house. She probably needs a break, too. I'm sorry you're all going through this. It's very hard.
posted by not that mimi at 8:29 AM on November 18, 2016

My grandfather passed away with Parkinson's when I was 4 years old. I only remember a few interactions with him, and they were all kind of weird, I couldn't really understand when he talked, and now I can understand that he wasn't himself enough that I could ever have known him. Most of my memories of him are kind of hazy and semi-negative, but all that is over-ridden by the stories my mom has told about him - like they say, memories are changed by the way you talk about them. I don't think that it will matter much in the long run, her first-person memories from age 2.5 will fade away in the face of all the stories you tell about the two of them when he was healthier. But if anything weird happens (like he has a medical emergency while she's in the room, or she finds the diaper-changing aspect of bedridden care hilarious, or whatever) you might be in for a few rough times in the next couple of months as she processes it.

I like the idea of not staying at the house, so if there's something going down that you'd rather she not be there for, it's not whisking her off to the playground or a room in the back of the house, that there's actually a "home base" off site.
posted by aimedwander at 8:31 AM on November 18, 2016 [1 favorite]

My younger sister died after being sick her entire seven months when I was about 2.5, and it was (and remains) pretty abstract to me personally. I don't remember her at all, but I do remember visiting her grave a lot. I think your child will be fine—I'm more concerned about the rest of your family.
posted by infinitewindow at 8:50 AM on November 18, 2016 [1 favorite]

At 2.5 I don't think there is much value to her in going through this. Her takeaway will either be trauma or nothing. And in any case, this is the least about her and a whole lot more about a bunch of other people.

When you have kids, sometimes the best form of support is being elsewhere with them so your partner can go through her thing without having to do the practical and emotional labor of parenting and household management on top of everything else. While your presence, and your child's, is hopefully a form of comfort...that is not the same as support. Dealing with a very mobile and hands-on, either toilet-training or toilet-curious toddler in a home hospice situation can be complicated. Bedtimes and routine can be very difficult to maintain, and you know how it is with little kids - if mom's accessible, she's going to be on the hook for all the default-mom work and maybe extra if your daughter is feeling insecure in the situation.

Also, people don't always die all nice like on TV. I was in my 30s and my mother still banished me from the house in my grandfather's final decline because he had no filters and was hallucinating most of the time. She didn't have the capacity for the additional stress of me even being in the house, potentially exposed to some of the louder stuff. She never has fully resolved the PTSD she has from that period of her life. It was bad, and they had extraordinary insurance and great hospice, but it was still real bad.

I think you need to have a hard talk with your wife about whether the right thing for everyone involved is for her to go alone and focus, go and leave you and your child at a hotel or someone else's house, or whether she actually needs the two of you specifically there in the house with her. None of these is a clear obvious choice, because it's going to depend on the situation and people involved. Don't do something just because it "seems" right or will look bad if you don't - talk to her, talk to her mother. There will still be a Thanksgiving next year, and it will be a tough one, but that's much more likely a time when a 3.5 year old will cheer the place up.
posted by Lyn Never at 9:01 AM on November 18, 2016 [6 favorites]

Please don't place too much weight on comments that are not relevant to being involved with a loved one dying from cancer at home with hospice treatment. It's unlike anything else, IMHO. Very sacred in respects, tragic in others. It's not merely illness. It's a very deep experience.

This is going to be an incredible burden on the household, a toddler and a dying loved one in the same home. Can you stay with a friend or relative in the area?

Your grandfather may spend final days or weeks (in one friend's case, months) almost entirely unresponsive and looking entirely unlike himself. You should get the hospice caregiver's opinion. They will know better than us what is going on and how to handle it.

Talk to your hospice caregiver about this question.
posted by jbenben at 9:03 AM on November 18, 2016 [1 favorite]

I've been dealing with a similar situation - my grandmother has dementia and isn't long for this world and I also have a 3 year old. I'll be honest, my son may get a little upset when we visit with her, but pretty much forgets about it after a day or two. On the other hand, having him there while trying to grapple with my grandmother's ill health and all the grief involved is just awful for me. Kids know when something isn't right and usually end up acting out in those situations. Now, I only have him make a brief appearance if she is at all lucid and otherwise keep him away. It's just way too hard to juggle parenting with caregiving, even with my husband there. I'm positive you won't traumatize your daughter, but please try to focus on your wife and in-laws needs. They may not be thinking clearly about this, so I strongly agree with the above suggestion to talk to the hospice caregiver - they've definitely dealt with these situations before and can give you an honest opinion.
posted by galvanized unicorn at 9:16 AM on November 18, 2016

My grandmother passed (suddenly) when I was three years old. My parents didn't take me to the funeral home and I didn't go to the funeral - I remember my mom and dad coming back from it, because my mom was sad. I don't remember anything else. I literally have zero memory of anything anyone said to me about it, and I've never been freaked out about people dying. I was, for the record, much more convinced I was adopted. (Kids are weird.) Whatever was said to me was so non-scary that I've just apparently folded it into my psyche because I can't recall a thing.

Keep it low key, don't make her have to do things she can't really do - like sit still through a funeral if that's not something you think she would be okay at doing. Line up some childcare and let her not have to deal with it. My cousins, on the flipside, had their kids at my aunt's funeral, which was a very bizarre experience, because especially the youngest just did not at all understand what was happening, and I think the other kid thought it was something to do with Christmas, since they'd dressed her up in a way that she associated with the holidays.

If there is a way to line up a babysitter while you're there to take her out and entertain her so that you can be there for your wife, that would probably be great.
posted by Medieval Maven at 9:24 AM on November 18, 2016

My sister and I's last visit with our grandfather was Thanksgiving when I was 5 and she was 3. He was in the last stages of dying at home from liver cancer and was much the same as your father in law.

I don't think it effected either of us very much - we could tell that he clearly wasn't well and that people were sad, but I think he had enough lucidity to appreciate seeing us one last time and I'm glad we brought him that comfort. Most people don't retain many memories from 2.5 years old, so unless the trip is profoundly effecting, chances are it will fade into a few vague memories pretty quickly.

We did stay elsewhere that trip, which I heartily recommend.
posted by Candleman at 9:29 AM on November 18, 2016 [1 favorite]

My dearly loved grandmother died when I was 8 years old. While she was ill, my father (her son) stretched the truth to me and said that children were not allowed to visit her in the hospital (or attend the funeral - I did attend the special meal held after the funeral). By the time I was old enough to realize that this was not strictly true (I was not allowed to visit her - by his decision, not the hospital's) I forgave him instantly because my only memories of Grandma are of her big lap, happy laughter, weird desserts, and best hugs. I do not remember her weighing under 90 pounds, suffering greatly from emphysema, because I didn't see it.

I agree with Lyn Never, above. It may be best for your wife to not have to also worry about your daughter along with caring for her mother and father. This is a decision to make together with her, I think.
posted by pammeke at 9:42 AM on November 18, 2016

I don't think your child will be too freaked out by this. If she is, you will be there to take her away and comfort her. Two-and-a-half-year-olds are really never on their own anyway. It is probably a good idea to stay at a hotel just to decrease the burden on your mother-in-law; and if you have other relations there or friends in town who could provide emergency toddler care while you help your wife and mother-in-law that could be really helpful.

One thing that hasn't been mentioned, though, is the comfort and joy that your toddler can bring to her grandparents. I don't know exactly what your family relationships are like, but if her presence can help your mother-in-law and father-in-law at such a difficult time, that alone might be worth bringing her.
posted by Hypatia at 10:22 AM on November 18, 2016 [5 favorites]

I expect some of my role will be to take my daughter out of the house, but that will also mean that my wife doesn't have our support.

Taking your daughter out of the house is supporting your wife. The most independent 2.5-year-old in the world still requires effort most of the time, and taking that off your wife's shoulders will help. Find a nearby park or other space where you can let her run around, and something else out of the house that she can do indoors in case of inclement weather (e.g., a rec center or even a mall with a play area).

Nth'ing "stay at a hotel". Even if not for the entire visit.
posted by Etrigan at 10:41 AM on November 18, 2016 [3 favorites]

I teach General Psychology, and we just talked about making memories in class last week. Basically (this is gen psych, so very basic!), kids don't remember things prior to age 3-4. There's two reasons for this. One is that they lack the basic language skills to successfully encode their experiences for long term storage (obviously as descriptive language grows the ability to correctly encode information grows). Two, the hippocampus is responsible for processing memories into long term storage. But the hippocampus is one of the last brain structures to develop, which means that a child younger than 3 really doesn't have the brain structure to store those long term memories.

Children will often say they remember things (and can give a good description) that happened at a young age, but more often than not they are remembering the stories that others have told about the situation. Those stories (and photographs and such) get rewritten into our memories as if we experienced them. (Memories also get rewritten a bit each time you remember and retell the story, so those memories can get warped over time).

Bottom line...chances are she won't remember her grandfather looking sick, especially if you have pictures of him looking healthy and vibrant in your home for her to see. I would not worry about that part. However, I think that her being in an environment of tension and worry could affect her own feelings of security and that might be something to consider. Research has shown that kids who are constantly in a stressful, anxious situation tend to be more anxious as they grow older. In your particular situation, I don't think having her visit will make a huge impact on her, but I would definitely have another place to stay that isn't full of anxiety (especially if grandfather takes a turn for the worse). I think seeing her caregivers visibly upset and not being able to understand why will be harder on her.

My thoughts are that she won't remember whether or not she was there at Thanksgiving and probably won't remember laying eyes on grandfather next week (unless it is in a very traumatic time...like seeing him fall or lash out in a hallucination or something...my grandfather died of cancer and he would yell out randomly in the last few days). So if she doesn't go, it won't make a lasting impression on her. If she does go and sees him once, that probably won't make a lasting impression on her either. How her loving adults react emotionally would make more of an impact than anything else, in my opinion. So whatever your decision is, don't regret it or fret over it! Do what's best for the adults dealing with a difficult situation...your daughter will be fine.
posted by MultiFaceted at 10:52 AM on November 18, 2016 [2 favorites]

When we were children, we were kept away from everything about dying and didn't give it much thought. I really missed my paternal grandma, and I was really bad at handling the funeral, but it passed.
The we suddenly lost the rest of our grandparents and our parents within 7 years, including the in-laws. And my siblings, their spouses and I (and my dearly beloved ex) collectively decided that we wanted to include the children, for a number of reasons:
- we didn't want to be secretive, because the secrecy had worried us more than the dying when we were kids
- we wanted our kids to be knowledgable about death, because we all felt so lost when the first of a series hit us
- we experienced a time of grief which was incredibly sad and difficult, but also brought our families closer together and gave our kids an understanding of family values.
The smallest kids don't remember much, but they do remember the family nights where we all gathered to spend time together, and to care.

Now I just asked my teenaged daughter - and her advice was a very strong recommendation for including children, basically for the reasons I wrote above, but she added: she doesn't really remember a lot about what happened when her step-gran was dying (when she was 3), but she remembers what she describes as the party (the wake), celebrating her grans' life. She has always felt happy about being included and not least at that "party" when adults asked her about stuff and she had answers. She felt proud of being part of a celebration for a loved person. She also added that other kids she knew had never seen a dead person, and she thought this was sad for them, because while grief is horrible, it is better to know what it is about. When my step-mum was dying, we spent every evening for the last month or more together, where I would cook, my nurse-sister would handle care, and my business sister would handle practical stuff. Our spouses would come for dinner and help my dad cope. We'd all drink a bit too much (but not too much for driving). Sometimes we were joined by cousins or friends of family. The kids would play. I can see how this was a good time for a 3yo with siblings and cousins. From our perspective it was a time of grief, for theirs, it was a time of communion.

What I'm trying to say is: it's OK to bring kids, they are not in the way, and they are not harmed. And, you need to talk about this proces with everyone else in the family. We weren't the romantic happy family before, but by talking everything through, we learnt a lot and became much closer.

None of us stayed at our parents' home, and that was probably good for our own sanity.
posted by mumimor at 10:55 AM on November 18, 2016 [2 favorites]

Kid Ruki was about that age when we lost my MIL to cancer. Kid was there at the hospital, at home hospice, and the hospice center when we said goodbye. MIL was on a tremendous amount of morphine and couldn't speak, but could give Kid one last kiss. We helped Kid throw dirt on the coffin. During Shiva, Kid was a source of comfort to my FIL. However, when Kid was 10, we did not go to the hospice to visit my dying grandmother, because Kid had memories of Memere healthy, and we didn't want to ruin that.
posted by Ruki at 11:07 AM on November 18, 2016 [1 favorite]

I was 2 when my grandfather passed after a long battle with cancer. We had moved in with my grandparents so that my mom could help take care of him. I basically hung out with my dying grandfather constantly so that my mom and grandma could have eyes on both of us.

All families are different, obviously, my mother and grandmother wanted the support of each other so the natural solution was toddler and dying man watching tv and playing. I have no memory of this. My mom and grandma say that it was fine and they both remember that my short life gave my grandpa a tremendous comfort during his final days.

Same family, 8 years later - we moved in with my great grandma when she was dying. Same deal. Me and my sister watched tv and read and played with my GG.

For what it's worth I'm now a long term care nurse and I love hospice work. I attribute this 100% to the attitudes of my mom and gran.

You can do this. I think that 2 is too young to really extrapolate Lessons About Death, but there is still a benefit to the very old and very young comforting each other.
posted by pintapicasso at 12:14 PM on November 18, 2016 [4 favorites]

My daughter was the same age when my dad died. It all went right over her head. My son was about 7 (very close to his grandpa) and he took it harder, but, really handled it like a champ and I was glad we were open about it rather than trying to shield him from it. Find things to do outside of the house, but, I think others might find having a vibrant young life in the house a welcome respite from death.
posted by trbrts at 1:51 PM on November 18, 2016 [1 favorite]

I used to date a woman whose mother was dying of cancer. At the end, all her brothers had gathered around as well and one of them had very small children. When she passed away, he asked us not to say anything to his children about her body and to not let them see it when her body was taken away, and to say "Grandmom is with God" as an explanation. I'm not religious (they were, obviously), but that has always stuck with me as a way to try to frame the situation more positively for children. I don't know how they ultimately reacted later, but at the time they seemed to accept that.
posted by cali59 at 3:28 PM on November 18, 2016

If you decide to go, make sure your MIL doesn't have to do extra work as a result. If she's like my mom, she'd feel bad that she couldn't do things specially for her grandaughter's visit, like she usually does (bake cookies, do crafts, read stories). Bring the foods she needs, toys and other distractions, and take her out if there's too much going on. It will be easier if your daughter is happy to be there and not bored. But toddlers take a lot of work, and if she's cranky or extra boisterous or demanding, it will be up to you to make sure you're her caregiver so your wife and MIL can focus on your FIL.
posted by Sukey Says at 2:54 AM on November 19, 2016

I'm a sociologist, a mom to a nine-year-old, and my mom died in Sept. after months of decline and eventually hospice.

I think it can be helpful to remember that it is a very recent concept to medicalize death and have it be something that is hidden from children and doled out to them in small, worried-parent-controlled doses. There is a difference between difficult and traumatizing - things that are hard for children do not harm them. That's where you come in, in my opinion. Discerning that difference. I think it's better for children to be involved and around. It's healthier. It's reality. It makes the situation real and doesn't leave it up to their imagination.

I would consider the circle idea of care. I would approach it as we are going to be with grandpa while he's dying and we're going to help grandma. If you frame it that way, it will be different from, "Grandpa's really sick and he might die and we're going to go see him and whoa as us." I would presented from a position of strength. That we're sad, but this is what we do in our family when someone is really sick or dying. (Your daughter is not going to think from now on that everyone who gets sick is going to die).

If your wife is having conflicts about care, having your daughter there can be a reason for you both to get out of the house, not just you. My mom just died in hospice and my step father did the opposite of everything I would have done and it was a horrible, painful death. Your wife should be focused on taking care of herself. That's the best thing she can do for her daughter.

I would suggest that you focus on taking care of your wife as well. I would have you both focus on treating your daughter as normally as possible while narrating for her what's happening in simple words with minimal data. If your mother in law is crying, just note it. "Grandma is crying because grandpa's going to die and she'll miss him. She'll be OK, though." Little kids are oblivious to most of what's around them and you don't need to draw her attention to everything, just help her identify what she is noticing.

Your daughter is not going to only remember her grandpa as sick. I would treat it as a part of life, it's just something we do. It's hard, and we do it.

That's what I did with my mom. I'm a fucking wreck, but my daughter is doing great. She spent a lot of time with my mom while she was dying. When my mom was actively dying, it was harder for her (my mom looked ghastly) and she just naturally went into the room where my mom was less. I noticed it and told her it was fine to do that and eventually she stopped going in at all. Right before my mom died I asked her if she wanted to see her one more time and she said no and I said fine. Even though she went in the room less, she still wanted to be at my parents house all the time.

I would see this as being much more about your wife than your daughter. Your daughter will be fine. Everything will be fine. Take care of your wife, everything else will follow. You know how to take care of your daughter and you know when you're daughter's not doing well. That's all you need to know. As much as you can, treat it as just a normal thing that you're doing. Because it is.

That's my two cents.

Good luck.

posted by orsonet at 7:17 AM on November 19, 2016 [3 favorites]

My earliest memory is of visiting my grandfather when I was 3 and a bit. He was dying of liver cancer and I remember his huge belly going up and down. He wanted me to give him a hug, and I remember wanting to, but being scared of his giant belly. This is the only memory I have of him and I consider it to be quite a positive one. So from a child's perspective, taking your daughter won't necessarily be traumatic.

From the adult perspective, my dad is also dying and I have two young kids. For various reasons, I couldn't take them with me when I visited my parents recently. My dad was really disappointed not to see them, but it also meant I could spend hours with him, sit with him during the night, and have time to say many of the things I needed to. It also meant I could do a lot more for my mom, who is getting really exhausted.

If you do bring your daughter, be prepared for spending most of the time out of the house with her - my dad is ok with about 10 minutes with my young nieces before he needs a break.

Finally, there is no one right choice in these difficult times. I'm sure your wife appreciates what you are doing for her.
posted by brambory at 9:31 AM on November 19, 2016 [1 favorite]

Since your question also focuses on how you can support your wife, the most helpful things my husband does is taking care of the kids, telling me I am a good daughter, taking care of things like bills, calling repair men, etc since it lightens my thought-load. I'm finding I need time to be sad and time to reground myself. Less helpful is when he seems to expect me to put away my worries and sadness or when he gets stressed and worried because he doesn't understand what I'm feeling. I'm short tempered and quite touchy these days, and I don't always have the energy to hide it, but it's really not personal and I always appreciate when he recognises that I need more hugs. Dealing with this has brought up a lot of questions for me about what I want from life along with fears about going the same way as my dad. Having someone who mostly just listens is very helpful. And, of course, make sure you take care of yourself too.
posted by brambory at 9:48 AM on November 19, 2016

A lot depends on the general family approach/attitudes.

When my ex's mother suffered a stroke we took our children (my six year old who was her biological grandchild (and has asd) and her little 2yo sister) to see her as we knew she wouldn't recover. My 6yo said hi, and once she realised Gran couldn't really interact with her in the normal ways (she was non verbal, very confused and hemiplegic) she sat in the corner happily colouring a book with her crayons. My 2yo daughter looked at the rest of us in the room, who were working on making her more comfortable, and after brief consideration she climbed up on the bed beside me and solemnly joined in rubbing cream into granny's disabled foot and leg.

She has once referred to that time, about a year later, saying, "mum, when granny G was ill we put cream all on her poorly side didn't we? So she didn't hurt as much when she died." She was utterly unphased by it all and took her cues from the rest of us, we were serious but affectionate, good humoured and calm.

Granny G died three days later and my ex's family didn't have the children at the funeral, although I went with my ex and my husband cared for the kids and then picked us up from the wake so the children did understand where we were/that we were saying a final farewell. The wider family did not view death as a normal, sad but unavoidable part of life and thus even if they'd been welcome I wouldn't have taken the children to the funeral. They were not matter of fact about it, and during those days around that time were evasive with the children's questions, told lies and used euphemisms (granny's just gone away for a bit, granny's just sleeping, granny's watching you) which are scary to small kids, especially spectrumy kids.

Children take their cues from adults. Death is a crisis, like birth (my daughters also saw their brother 5 seconds old as he was born on our bedroom floor while they were having a story read to them in the next room), but it can be a normal crisis, a normal part of life, if you can define and frame it as such. If the family in general cannot do so then taking your daughter is less ideal, as she may be traumatised by the reactions of the adults. And in turn this would be harder on your wife who would have to care for her family and worry for her child at the same time.

Time for a good chat with your wife and, if possible, other relatives on what the best thing to do is. There's no wrong way, but there will be a best way for you guys.

Wishing you all, all the best.
posted by intergalacticvelvet at 6:03 AM on November 20, 2016

When my father died my niece was there and it was utterly exhausting. It wasn't comforting or sweet or a reminder of life. It was just one more damn thing at a terrible time. This was because no one was able or willing to manage her during that process.

You can best support your wife and her family by making sure that they don't worry about your daughter and her needs at this time.
posted by winna at 5:59 PM on November 20, 2016

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