I can't think of one, I'm exhausted
August 14, 2012 5:24 AM   Subscribe

My 90 year old grandmother is barely conscious, rarely eating, and is losing her mental faculties. I visit her every lunchtime to try and get her to eat. My mother (her daughter) takes the evening shift for dinnertime. I'm not coping well. Any suggestions to help me make this easier, so I'm not sobbing my heart out every day?

She's now at the stage where she struggles to lift her head from her chest. Today for the first time, she let me spoonfeed her, but she only had about two or three teaspoons of food. She kept falling asleep between spoonfuls, I asked the staff (after ringing my mother - who worked as an aged care nurse when I was a kid - in a panic) what to do. They advised that I keep her awake as long as possible, and get what food I can into her.

I did. I got a few vegies into her, and when she went into a deep sleep, I gently removed the plate, wiped her mouth, and told her I love her. She slept on.

This is so fucking HARD. This woman taught me to play scrabble, told me family secrets that should not have been kept from me, told me that I was her favourite grand-daughter for the last 40 years..

I'm not coping with her dying slowly. She always said she wanted to 'fly to glory to be with her Lord' and leaving aside the fact that I don't believe in glory or her Lord, I just want her to go, and be in peace and pain-free. She was a dignified proper lady, and she would be mortified to know how she is now. Her body is failing, her mind is failing, she doesn't recognise me (her favourite grand-daughter) or my kids.

I just want her to go. And I'm terrified that she won't, that we'll be spoonfeeding her for months or years to come, while the rest of her children, grand-children and great-grandchildren go about their merry lives without the seven-day-a-week-care-component that my mother and I have (willingly) taken on.

I guess my question is two-fold:

1) how do I strengthen myself to get through the daily lunchtimes, when she can barely eat, and when she is lucid argues with me about eating and usually refuses to allow me to feed her; and

2) how do I get past the bitterness I feel about the rest of the family who really don't give a sideways fuck about her, but are suddenly ringing or texting or messaging me every day because they are 'so concerned'?

I guess the final question would be, how do I hold my tongue when I want to tell them all what I think of them, when Nanna has died, and they all suddenly find they can find the time to hop on a plane to attend her service?
posted by malibustacey9999 to Human Relations (41 answers total) 4 users marked this as a favorite
I should have mentioned this, but since she has been going mentally downhill, I've been keeping a list of stuff she says that makes me smile. Like when I asked her if she needed a hand (with lunch), she said, "do I need a MAN? NO!".

I love my Nanna, she's saved my sanity during a fairly shitty upbringing, and I really need help to deal with her degeneration.
posted by malibustacey9999 at 5:27 AM on August 14, 2012 [1 favorite]

Please contact your local Hospice organization, for your sake and for hers. Hospice staff are trained to help both of you find the route through this difficult and heartbreaking journey.
posted by HuronBob at 5:35 AM on August 14, 2012 [5 favorites]

Thank you, HuronBob, but she's in a good nursing home. She's been moved to A Wing, which is what I'd called the hospice section. I just need ways to deal, mentally I think, with what's going on. Despite having a shitload of family and friends, suddenly it's just my mother and me who help feed her, who change her clothing when she insists on feeding herself and spills it all over herself, and now she doesn't even have a phone anymore because she can't hear and can't talk.

Stopping threadsitting. Going to have a good cry now.
posted by malibustacey9999 at 5:43 AM on August 14, 2012

Why is the nursing home not feeding and changing her?

It sounds like your family is not local to her ("hop on a plane"), so they cannot be there daily. The ones who can be there regularly -- are they visiting her at all?

When your family calls you, you can tell them that they could visit her (if you think she'd like it, or it would mean something to her). But remember that they have commitments wherever they live, and they cannot necessarily afford two trips, and perhaps they think the funeral is more important. (Again, I am assuming that your family members are not local.) You can also tell them that you will send out a weekly email report, but that you will otherwise not be answering questions about your grandmother as it is too upsetting for you.

I am so sorry you are going through this.
posted by jeather at 5:55 AM on August 14, 2012

I'm so sorry that you're going through this. I just had a similar experience with my grandfather and here are the two things that kept me going.

In the daily caregiving, do not think about the what-ifs of the future. All of the potential unhappiness in the future is unbearable. Only deal with the reality of the next 12 hours. You can't deal with helping her today if you're also dealing with the burden of imagining the next 6 months.

The other hard thing is letting people in the end stages of life choose not to do the things that will make them "better" because there really is no better. We went through a similar progression with the withdrawal from eating. I think you have to encourage someone to eat, but after a certain point, there's no reward for them or for you to beg them. This is really hard, because it's admitting that someone is in their last weeks or months of life. You grandmother may not be at this point yet, but please look for it when you get there.

Finally, the best single consolation through weeks of really hard caregiving was that my grandfather knew that he was loved, everyday. That's the most important part of your caregiving, and it sounds like your grandmother very clearly can tell that you love her..
posted by mercredi at 6:03 AM on August 14, 2012 [12 favorites]

2) how do I get past the bitterness I feel about the rest of the family who really don't give a sideways fuck about her, but are suddenly ringing or texting or messaging me every day because they are 'so concerned'?

Is there one family member who could be the point person for information? That is, is it possible for you to call one person with updates and have the rest of the family call him or her? That might take away some of the stress of having to relay the same information to multiple family members (about whom you are understandably conflicted).

Have you talked with the nursing home's social worker (or its equivalent) about the services that might be available to caregivers/family?

how do I hold my tongue when I want to tell them all what I think of them, when Nanna has died, and they all suddenly find they can find the time to hop on a plane to attend her service?

You are doing this hard, hard job that's in front of you, and it would be so much easier if everyone else could, or wanted to, help. But that's not the case for whatever reason. Focus on your connection to your grandmother right here, right now, and leave your feelings for other family members aside until later. I know it's hard. I know. But take at least that much of the burden off yourself by reminding yourself to deal with them later. After. Now is not the time to worry about them.

how do I strengthen myself to get through the daily lunchtimes, when she can barely eat, and when she is lucid argues with me about eating and usually refuses to allow me to feed her

Trust her body to know what it needs, which will be less and less. Know that the nursing staff is also keeping an eye on her intake. Talk with them about this process; you may have to settle for being happy that you can convince her to have some water.

It is so hard. I am so sorry for you, and for your mother, that this time is so painful. Big hug.
posted by MonkeyToes at 6:05 AM on August 14, 2012 [4 favorites]

Oh, honey. I am so sorry you're going through this. I am not a medical professional, but I am a former hospice volunteer. At your grandmother's stage of life, food and water become less and less essential. If she doesn't want to eat - and if eating is frustrating/emotionally-painful for either one of you - she doesn't have to eat. It's wonderful that you're spending time with her every day, but if it would be easier for you to spend that time talking to her, holding her hand, reading to her, etc. in lieu of feeding her, that would DEFINITELY be okay.
posted by julthumbscrew at 6:10 AM on August 14, 2012 [23 favorites]

I'm so sorry for what you're going through.

I would recommend contacting the local chapter of Alzheimer's, and seeing what support they can give you. (Even if it's not actually alzheimer's, they likely have some resources they can send your way.)

What is the financial situation? There are sitters you can hire to help with things like this, although, yes, the facility that she's in should be helping. I understand, though - my grandmother is in rehab right now, and we're there 3x day. Luckily, there are more of us. There are also people from church organizations, neighbors, etc, that are willing to help at times like this. Sometimes it's enough to know that someone will be there, helping, and seeing if she eats - and sometimes they give people they don't know less trouble than they give us. My grandmother gives my dad the hardest time, but is far nicer to her nurses.

I also downloaded and read parts of The 36 Hour day which was helpful to me - my grandmother has delirium right now (dementia caused by something, like potassium deficiency) and it was helpful for me to know how to answer certain questions.

Hugs to you.
posted by needlegrrl at 6:11 AM on August 14, 2012

how do I strengthen myself to get through the daily lunchtimes, when she can barely eat, and when she is lucid argues with me about eating and usually refuses to allow me to feed her

It sounds terrible, but... let her have her way. She's 90. She's presumably terminally ill. She doesn't want to eat. This is what happens to old people shortly before they die, and it's as natural as anything. My grandfather died in May, and that's pretty much what happened. He had been getting pretty senile for the previous year, and during most of that time he'd devour pretty much anything you put in front of him. Then, during the past few weeks, he just sort of... stopped. He died in his sleep pretty shortly thereafter. Kidney failure.

Which is probably why he didn't want to eat much. His body had probably stopped digesting stuff very effectively, and eating probably made him feel uncomfortable. So while grandma and my dad encouraged him to drink--dehydration is No Fun At All--it was only enough to make sure he was comfortable. He wasn't making any urine, so too much water wasn't going to help him. We just sort of let nature take its course, and within about a week of really taking a turn he died peacefully in bed. It was sad, but it wasn't all that unpleasant. In terms of "Ways to Go," drifting into unconsciousness and not waking up isn't bad at all.

So how do you deal with lunchtime? Quite possibly by not having it. She doesn't want to eat. Don't fight her about it. Visit with her. Be with her. Don't get into a conflict about what's only going to prolong the inevitable.

This will probably involve a conversation with your mother, who may be of a different mind about things, but I'm no fan of force-feeding people who are obviously about to die. Just let 'em go.
posted by valkyryn at 6:13 AM on August 14, 2012 [17 favorites]

I'm sorry you're going through this - have been there and it's agonizing to watch someone you love slipping away by inches.

Does the nursing home work with hospice? Hospice can provide help for you in coping with this, not just logistical and physical care for your grandmother. A good nursing home should also have social workers on staff to help families. Their staff should be helping you if not taking over changing duties - that's something you can choose to do but the staff should be on top of the necessities.

When my mother-in-law had reached a similar point last fall we brought in treats to try to tempt her - chocolate milkshakes and other nourishing but easy to swallow treats. She also drank Ensure - more calories and nutrition for less effort. It won't postpone the inevitable but we found it comforting and I think she felt better with more nutrition until that was no longer enough. When she stopped wanting to eat we didn't fight it though - she was letting us know she was ready to move on and at that point pushing food is not a kindness.

It's not unreasonable to want to vent - to a close friend, a therapist or a support group - about all the ways in which one's family may not be helping or supporting what's going on. You may not want to practice a scorched earth relationship with your family for not being there - some can't cope emotionally, some can't get away, some create more havoc when they do show up - I speak from experience on with all of those. Personally I think people saying they want to remember a person at their best not in decline are being self-indulgent but for many it's a real thing.

And I'm sorry - this kind of care-giving is so very hard. Take care of yourself knowing it can go on for a long time and you have to get through it too.
posted by leslies at 6:13 AM on August 14, 2012 [4 favorites]

Have you told her it is okay for her to go? And that you and your mom (and others) are going to be just fine? Some people actually need to hear that so they know they can let go. This has happened in my family more than once.
posted by maxg94 at 6:15 AM on August 14, 2012 [7 favorites]

This is so hard. I really feel for you.

Death and dying is a part of life. Don't worry too much about her food intake, I'm sure the staff will insure that she's getting proper nutritional support, via IV if necessary. Your cajoling and spoon feeding is just one more thing for your grandmother to do, and she may be too tired and worn out to be bothered with it.

Instead of making a big issue of it, sit with her and talk to her, offer food, but if she doesn't want it, don't make her.

I am sure your Nanna knows that you love her and she appreciates that you are there to be with her.

As for other family members, they're missing out. You have the honor and privilage of being a comfort to your grandmother as she transitions into death. Yours is the hand she's holding in her last days, your voice is the voice she hears every day.

Send out an email to your family asking them to write her letters, via you, so that you can read them to her. This will give them something positive to do, and I think you'll get an insight as to their states of mind. Perhaps they are broken up that circumstances and finance make it impossible for them to be there with her. Maybe they're just craven assholes who don't give a shit. Either way, you're telling them what they can do to help, and either they do or don't do it.

You might want to blog about your experiences. Send this email to everyone who might care:

Dear Family and Friends,

As Nanna's health fails, she depends on Mom and I more and more. While we know you have her in your thoughts and prayers, we are unable to continue to field phone calls, emails and texts asking about her status. I've started a blog at www.nannablog.com where I will update her condition, as well as discuss my own feelings at this difficult time. I would urge those of you at a distance to come and spend some time with Nanna while she's still able to appreciate your presence.

Thank you all for your concern.

The, now leave me the fuck alone, is understood.

You're allowed to be bitter and upset at the rest of your family. However, that doesn't serve your Nanna. She loved them all, in their way, and forgiving them would be an awesome tribute to her love and devotion to you.

Take good care of yourself.
posted by Ruthless Bunny at 6:17 AM on August 14, 2012 [7 favorites]

Accidently hit post before I was finished. Dealing with the bitterness when others don't contribute or seem to care is a challenge. I try to remember that they are the ones missing out. You are playing a very important role in the last stage of your Nana's life, they aren't. Being able to care for someone at this point is hard, but it is an honor and a gift to you. I would not have traded any of those last days with my mother for anything in the world.
posted by maxg94 at 6:20 AM on August 14, 2012 [3 favorites]

We had something similar happen when my mother was dying, and it filled me with more anger and righteous indignation than I thought I could handle. It was infuriating, frustrating, saddening, terrible. And I get why you are doing all this even though hospice care is available -- it's because that's what you do when you love someone. You can't walk the whole journey with them, but you can hold their hand and walk them to the gate.

I don't know if this will ring true for you in your situation, but I latched onto two thoughts that I've kept even until now:
- It feels like you are taking the harder path by being their to comfort her and watch her slow decline, but actually it's the easy path. Hard would be living out the rest of your life knowing that you didn't do it, that you were too weak or self-absorbed to do the hard things that needed to be done.
- Your Nanna sounds like a strong, loving, wonderful woman filled with love for the people around her. As obnoxious as they are being, she would probably forgive them of their faults even as quickly as you rush to protect her. This hurts you much more than it hurts her.

Talk with her medical professionals about the eating. It might be best to not force the issue. As your body starts to slip away, my understanding is that digestion slows and so you don't feel hunger or thirst because your body is not processing food and water at the same rate. This is just a natural process, similar to the breath slowing. The organs just slowly stop over a period of a few days.

I'm sorry you're experiencing such a painful time right now.
posted by Houstonian at 6:23 AM on August 14, 2012 [1 favorite]

...it would be easier for you to spend that time talking to her, holding her hand, reading to her, etc. in lieu of feeding her, that would DEFINITELY be okay.

Seconding this.

If I can be frank -- the body knows how to die. Everything gets shut down in the right order, and what would seem to us abnormal activity is perfectly fine for where she's at right now. She may not want to eat because her body simply doesn't need it anymore.

When I went through this with my Dad, no-one was prepared on how to handle it. You play it all by ear, and make it up as you go along, and invariably you do the right thing anyway.

As for the absentee relatives, well, ultimately that's their problem. They may be scared, or selfish, or confident in you and your mother -- who knows. And why care about that? That's all for later, if it needs to be thought about at all.

Good luck.
posted by Capt. Renault at 6:33 AM on August 14, 2012 [5 favorites]

I really can't tell from your post if she is in an aged care wing or a palliative care wing. If she's in aged care, a referral can be made for a palliative care assessment (which is usually a community based worker who can see her wherever she is) they may be able to do some or all of the following:

Rationalise her medications,
Make an Advanced Care Plan (which can dictate which treatments are acceptable and in which circumstances, which might be none, ever. The last thing stressed out carers need at end of life is a call 'Grandma has an infection, what do you want us to do?),
Give you some idea of what to expect,
Give you reassurance you are doing everything 'right' and you don't have to second guess your actions,
Make a nursing care plan so nursing staff know how best to proceed,
Give you practical advice on making this easier on yourself and listen to all your frustrations. Palliative care nurses are especially skilled at supporting carers through this stuff.

Everyone else here has given you good coping advice. Reframe eating to eating for pleasure if there is anything at all she would be interested in a nibble on. Apart from that, just enjoy your time. You know logically you can't 'feed her well' again at this point. Forcing the food could be taking away what little control she has of herself right now. You don't have to do any more for her right now than love her and keep her company.

Let people care for you right now too.
posted by Trivia Newton John at 6:44 AM on August 14, 2012 [3 favorites]

Just adding on to the suggestion of blogging - there is a service called CaringBridge that will let you have a blog just for this kind of thing.

I'm so very sorry.
posted by Medieval Maven at 6:44 AM on August 14, 2012 [1 favorite]

When I was at the point you are at now -- emotionally exhausted -- I sent out a letter to my family letting them know I was at the end of my rope and I needed help. My sister hopped on a plane the next day, and for the next few months my family spotted me, one after the other.

Do this for yourself: For now, so that you can recover enough to spend your last times with your grandmother in a better frame of mind. And for later, so that you won't carry the bitterness you feel forward. Or so that you can really let fly if that's the way it turns out.
posted by Killick at 6:55 AM on August 14, 2012 [2 favorites]

I'm crying myself as I type this.

First of all, my experience is that hospice will help you even if your Nanna is in the best nursing home in the world. When my beloved grandmother was in her waning days, we had a darling social worker and nurses helping her and helping me. I was in over my head many times and only a call to a hospice nurse (Susan, bless her!) could straighten me out. I honestly can't recommend them strongly enough, nursing home or no.

Refusing food is a step in the process. Nursing home staff will want her to eat, and want to pressure you into forcing food into her. This is not necessary. She doesn't need nutrients because her physical processes are beginning to shut down. This is hard to hear, but you don't need to feed her any more.

As far as your bitterness toward your relatives? That's one of the drawbacks of the shitty childhood. I had one too, and my grandparents were the last members of my family I had any cordial links to, so when the time came for memorial services and the relatives wanted to take over, I had tons of rancor about it. I still do. Gather your support people around you, your real support people. I feel like it's not worth it to have fights. Try to stick close to the family members who are the least offensive to you, or bring people you can count on. You don't have any obligation to show your real emotions to unsupportive family members. They don't have any claim on you.

Please accept my warmest sympathies to you and your dear Nanna. If there's anything I can do, obviously you can MeMail me. I'll be thinking of you both.
posted by S'Tella Fabula at 6:59 AM on August 14, 2012 [1 favorite]

Have you very directly, bluntly asked for help from local family? I don't mean "Wow, this is so hard for me, I wish I had some help" but "Hey, I need you to come help me feed her lunch on Thursday." Or "I appreciate your text messages but what I really need is someone to do ____. What day are you available to do ____?" Maybe ____ is taking over something in your own life while you care for grandma. Doing your laundry. Grocery shopping. Watching your kids. Etc. This is not negotiable for you, you need help, so keep asking until you get it.

Sometimes people don't know what to do, they're uncomfortable around sick people, or they figure that you've got it all handled. If you've been very direct with them, and they've directly told you no, then you have my permission to be upset, but it's still doing you no good. Your grandma was "dignified and proper" and "bitter and resentful" doesn't really fit with that. If she's a Christian, she probably believes in mercy and forgiveness. So consider how she'd want you to act and feel.
posted by desjardins at 7:05 AM on August 14, 2012 [3 favorites]

Just wanted to add my anecdata to the chorus: hospice can be incredibly helpful even if your Nanna is in a great nursing home. The nursing home staff have been experts at keeping her alive; hospice staff are experts at helping her die in the most humane and dignified way possible, when the time comes, AND at helping you through the process. It's a whole supplementary level of support for both you and the dying person, in addition to the nursing care she already receives.

My Dad died in the spring in a nursing home and had hospice care during his last few days. They were amazing, and I'm so so grateful to have had their input in his care. The organization we worked with was completely covered by Medicaid in our case, so money might not necessarily be an issue. I strongly recommend you consider it; feel free to MeMail if I can give you any more information.

I'm so sorry you're going through this. Your Nanna is lucky to have someone as caring and involved as you.
posted by hilatron at 7:30 AM on August 14, 2012 [1 favorite]

How I did it with my grandmother was one day at a time. Mine died at 88 in a very similar situation to yours. I also plead and begged her to eat but as so many other posters have mentioned, MY wants and wishes really came in last place. It was exhausting and difficult and I went through a roller coaster of emotions, but I feel honored and fortunate that I was able to experience that time of her life with her. I encourage you to try to look at it from that perspective and as difficult as your emotions are and you do have a right to them, we are all human, this time is about her.
posted by heatherly at 8:31 AM on August 14, 2012

I'm so sorry this is happening. I don't have a ton of experience with it, but everything that you're hearing sounds right to me -- it's not on you to get food into her. Be encouraging and loving, but at some point, it's not your responsibility to persuade her to swallow food if she doesn't want to, and it may not be the most comfortable thing for her if she is, as others have suggested, losing her appetite at the end of her life. I'm sure that when she's lucid, your presence is comforting in a way that eating a couple of bites of food cannot compete with anyway. There's no point in spoiling your peacefulness with her to get her to ingest a few calories; I suspect you both benefit more from keeping everything calm.

As for the rest of the family, only you and they know whether they don't care, but I think either way, trying to extend forgiveness to them may ultimately be most peaceful for you.

You are playing a different role now, it seems to me, than what people think of as traditional caretaking. You are easing her way, and as hard as I'm sure it is, I bet your instincts are excellent. Again, I'm so sorry, and I wish you well.
posted by Linda_Holmes at 8:45 AM on August 14, 2012

Keep in mind, as the body nears death, hunger and thirst fade, because the need for nutrients and fluid is increasingly no longer there. This is a natural part of the process (though understandably upsetting or alarming for loved ones). Making her eat or drink when she doesn't really want to can actually cause her discomfort and prolong things. Here's some more info on keeping her comfortable at this stage (for example, ways to make sure her mouth isn't dry without making her drink).

I'm so sorry you're going through this. My best to you and your family.
posted by scody at 8:45 AM on August 14, 2012 [5 favorites]

Has anyone at the home spoken to you about what changes you can expect to see as your grandmother's body begins preparing for death? It may be better discussed with the home's nurses/social workers than read, but here's a link to some information on that subject. (If you feel up to it, of course. I found it helpful to have a way to interpret what I was seeing, and it helped me to get my mind around the idea of "this is really, really the end.")
posted by MonkeyToes at 8:59 AM on August 14, 2012 [2 favorites]

If she is in the process of dying (which yes, can last a while) then you're not doing her any favours by getting yourself in a state trying to get her to eat more than she can manage. If she's alert for a small amount of time, is there anything that she especially enjoys that you can give her small amounts of? There's a time and place for eating your vegetables and this might not be it unless they are her absolute favourite! I've found that a lot of people find ice cream comforting and pleasant to eat long after they want to eat anything else. I agree with all the advice about mouth care for comfort and involving palliative care/hospice services if you can.

On the other hand, people can be in a decline and yet not actively dying. If she has a UTI or other infection then this could be causing the drowsiness and confusion beyond any other decline you've been seeing. I think it is worth checking this with the staff but respect their experience if they gently say this isn't the case. If she does have an infection she can recover from, keeping up her nutrition would be worthwhile, and the best strategy is usually to give little and often and as energy dense as possible.

Whatever happens, you can't force feed her and it's not your fault that she's not up to eating. Whether she has one more spoonful or not will not change her health. You are doing so well just for being with her every day and she is likely to find your presence comforting even if she can't show it. Try to stay calm when you're feeding her because that will make her more comfortable and more likely to eat if she needs to.
posted by kadia_a at 9:45 AM on August 14, 2012

I think I would be bringing her homemade fruit and juice slushies and homemade healthy milkshakes to get more into her.

Maybe start a free blog to do updates as a means to get the family out of your hair? That way they can check the site for updates instead of texting, calling, etc. That way you can do one update for everyone at a time that works for you and not feel so harrassed.

The joke in my family is that one day we will get a card or letter from mom about something ordinary, like a holiday or birthday, and she will mention casually that, oh, by the way, your father's funeral service was lovely. (The joke is due to the number of times she casually mentions after the fact that he was recently in the ER again or recently hospitalized again.)

I am not suggesting that as a method. More mentioning it in hopes it gives you a laugh. Dark humor can be your friend during a tough time.
posted by Michele in California at 10:01 AM on August 14, 2012

We went through something similar with my grandmother last year and it's very hard. You have all my sympathies.

As other people have said, if she doesn't want to eat then you don't have to make her especially if it makes her time with you extra difficult. My grandmother didn't want to eat because it didn't make her feel good, she would get constipated and having to have some staff person come in to change her diaper after she'd had meds for that was so seriously embarrassing. Try to get her to drink a little if you can but don't worry about it. The staff will give her an IV if they need to.

Your role is really just to be there, be a reliable presence (even if she doesn't know exactly who you are - mine sometimes did and sometimes didn't) and be kind. To her and to yourself. This is such a hard thing to watch and deal with and you also have to allow yourself to not be very good at it. It's not the sort of process most of us train for, so allow for feeling like you're drowning and take a life raft when you can.

As a family member who was far away and wasn't there every day I feel tremendous guilt about the extra burden it was on those who were local. All I could do was call for updates. In my case, I mostly talked to my dad, since it was my mother's mother, and he would play "info desk". If you have someone who can do that for you then take advantage of it. I was able to be there for a week at a time a couple of times during the 8 or so months that this went on and honestly do not know if I would have had the strength to do it every single day like my mother did. But there were also people who were local who did try and who... were not so good. And the added burden that it took on my mom to not only deal with her mother but also other family member's emotions and breakdowns kind of pissed me off. So in some ways, if these are not people who for whatever reason do not feel they can be there it might be a blessing in ways you can't now anticipate.

We tried as much as we could to just go on with life though it felt like everything was in suspended animation, like we were waiting for a starters gun to go off with "BOOM, GRANDMA'S DEAD, you can all live now!". No one does this well really. You don't have to be the first.
posted by marylynn at 12:19 PM on August 14, 2012

I'm sorry you're going through this, sometimes it is indeed just "hard." You don't know what to do, and nobody seems to be helping. You're doing a great job so far and you're instincts are sound.

90 now means she was about 16 in 1938. You might try bringing in some music from that time.
posted by rhizome at 12:28 PM on August 14, 2012

Oh, bless you for being with her on this last stage of her journey. Agree with everyone that it might be easier to get her to drink--a smoothie or even something like Boost or Ensure--than to eat.

It's hard to see people dwindling away, but that can be one of the gentlest of ends. Your grandmother is probably tired and longing for rest. Love and attention and sharing memories (the music idea is fantastic) are what we can do for the people we love as their bodies shut down.

This isn't likely to go on for years. It most likely isn't going to go on for too many more months. I know that must be painful to hear in one way, but in another way maybe a relief that your grandmother's struggle won't be prolonged? The digestive processes are among the body's most energy-intensive, and as the body starts to shut down, the brain stops sending appetite signals. The chances are vanishingly small that your grandmother is feeling hunger or discomfort, despite how little she eats.

Seconding the suggestion of using CaringBridge as a platform for sharing information with other family members. Their templates are clear and quite easy to use, and especially in times of stress or (understandable) frustration with other family members who aren't as involved in caregiving, it can feel simpler just to make a quick update to one central site.

You and your mother and your grandmother will all be in my thoughts. I wish you all the very best.
posted by Sidhedevil at 2:04 PM on August 14, 2012

I will add that I have a chronic medical condition and used to have serious trouble eating. I am not a big fan of Ensure or Boost. I consumed tons of Carnation Instant Breakfast for years. And my mom made very healthy homemade slushies and milkshakes for my dad when he had colon cancer about 19 years ago. She was putting so much weight on him at a time when most cancer patients are losing weight that his doctor yelled at her to slow it down out of concern that his heart would not be able to take the strain of the big weight gain. (He lost a third of his body weight before he was finally diagnosed and treated.)

YMMV, of course.
posted by Michele in California at 2:57 PM on August 14, 2012

Are there caregiver support groups in your area? Sometimes (OK, nearly all the time) it helps to be with other people who are in the same situation, who know the intensely boring moments and the intensely emotional moments and the just-plain-freaky moments of caregiving. If there's a social worker at her nursing home, ask the SW for referrals or for help in setting up some support for the family members of other residents.

I've been there - as a caregiver to my mother, and as a mental health person working with elderly patients in a psych hospital. MeMail me if you want. It's the hardest work I've ever done, and I am sending as many warm hugs and thoughts as I can across the miles to Australia.
posted by catlet at 3:21 PM on August 14, 2012

As the home is not technically a hospice, they may not have this useful manual, "A Caregiver's Guide to the Dying Process" (.pdf), published by the Hospice Foundation of America. It may help you understand what you're seeing, and to discuss options for pain control with her doctors. Also, more on end-of-life nutrition and hydration.
posted by MonkeyToes at 3:32 PM on August 14, 2012 [1 favorite]

Note if you are looking for Australian resources, search for 'palliative care' not 'hospice'. It is not location specific.
posted by Trivia Newton John at 4:50 PM on August 14, 2012

When my grandmother was dying all she would eat and drink was Ensure and Wendy's chili. Once she got to the point she didn't even want that much we didn't push her to eat. It upset everyone and it clearly wasn't going to help much. So, as others have said, don't worry if Nanna eats or not, just spend what quality time with her that you can.

As for the bitterness, you just have to let it go. It's not doing you or Nanna any good. Just tell yourself that they are the ones missing out on being with such a wonderful woman.

You are in my thoughts.
posted by deborah at 5:27 PM on August 14, 2012

I won't mark best answers just yet, because I'm crying yet again and can't focus, but I've just been for my lunchtime visit. She was in bed, asleep. The staff woke her to eat, I offered her tiny bits of the roast pumpkin (because she's always loved it), she ate three half-of-a-teaspoon-sized pieces, and she didn't drink at all.

Thanks to the advice here, I'm now not stressing about her not eating or drinking. I sat with her as she drifted in and out of sleep, holding her hand, telling her I love her. I was crying the whole time but I really tried to hold onto the suggestions above, that I am blessed to be with her at the end of her journey through life.

She is a very devout Christian. Towards the end of my visit, while she slept, I quietly said, "Nanna, it's okay to go... Jesus is waiting for you" and she opened her eyes and said the only lucid thing she'd said today, "My father doesn't want to take me yet". Wow.

All your advice and sympathy is so very much appreciated. Thank you. And my Nanna - the old Nanna who could be feisty as hell but also an incredibly caring loving woman - would thank you too.
posted by malibustacey9999 at 9:25 PM on August 14, 2012 [3 favorites]

Now they're taking her off all medication, and putting her on morphine. The end is nigh, and I hope it comes quickly, easily and painlessly for her.

Thanks again for the advice above. I feel much calmer, and also more able to cope with the oncoming onslaught.
posted by malibustacey9999 at 11:21 PM on August 14, 2012 [1 favorite]

And all of your life you'll be at peace because you'll know you gave Nanna the care and love she needed to make her life end in a gentle way. You and your Nanna have a bond that will not be broken with her passing. You're doing everything right - be easy in your heart now.

As hard as it is to do, try not to harbor resentment against your less-than-helpful family members. In every family there are one or two who carry the burden of helping the old one come to a peaceful end and all the others just don't seem to be involved enough, but the truth is that those who DO the work are being given a very special opportunity that the others miss out on. You'll forget about the mess and the frustration, but you'll always cherish the experience of sharing the end of her life with your grandmother.

What a very special granddaughter you are.
posted by aryma at 2:03 AM on August 15, 2012 [2 favorites]

You are giving and receiving a great gift, being able to be with your Nanna in her final days. Her spirit & lessons will always be in your heart.

It's hard to believe that other family can't find the time to be there, but that doesn't mean they don't care, and it also doesn't take away from your time with her.

I'm sorry for your grief and eventual loss.
posted by Heart_on_Sleeve at 5:57 AM on August 15, 2012

Well, Nanna has gone. I got the phone call at about 1am this morning. I didn't cry then. But I've cried a bit today when spending time with her two daughters, my mother and my aunt.

All your advice helped immensely. I stopped worrying about trying to get food and water into her, and just concentrated on spending time with her, talking, holding her hand, stroking her lovely soft cheek, brushing her hair. She's always loved ice-cream, and that was the last thing she ate, a few days ago.

She had been asleep since they started pumping her full of both morphine and a morphine substitute. I knew she was still there inside, so I visited a couple of times a day for a few hours. I read her favourite poetry out loud. I read her passages from the bible. I played her favourite gospel music. I held her hand and talked to her, even though she's been completely non-responsive.

I told her how much we all loved her. I told her that her children - my mother, aunt and uncles - had finally reconciled and were all speaking to each other again. I told her that we'll miss her, but she'll always be in our hearts.

I tried very hard to follow the advice above, recommending that I treasure this time with her as a gift. Sometimes it was difficult, but I think that advice made the last week and a half a lot easier.

Now I'm working on forgiveness of others who either haven't made the effort, or have made a token effort which is too little, too late. So far, not so good... but it's still raw. I'll keep working at it.

Thank you all so much.
posted by malibustacey9999 at 9:52 PM on August 23, 2012 [6 favorites]

I just thought I might share this piece I read at Nanna's memorial service today, because it's comforting and beautiful, and one day someone who needs it might stumble across this thread.

To Those I Love

If I should ever leave you whom I love
To go along the silent way,
Grieve not,
Nor speak of me with tears,
But laugh and talk of me
As if I were beside you there.

(I'd come - I'd come, could I but find a way!
But would not tears and grief be barriers?)

And when you hear a song or
See a bird I loved,
Please do not let the thought of me be sad,
For I am loving you just as I always have.
You were so good to me!

There are so many things I wanted still to do,
So many things to say to you...
Remember that I did not fear.
It was just leaving you that was so hard to face.
We cannot see beyond...
But this I know:
I love you so -
Twas heaven here with you!

Isla Paschal Richardson (1886-1971)
posted by malibustacey9999 at 3:38 AM on August 31, 2012 [4 favorites]

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