Greetings! I have a question about Team You. Mainly, how does obtain such a wondrous thing?
I am in a situation where I am the primary caretaker for an elderly parent with serious health issues. She requires a great deal of time and energy- mental more than physical.
The rest of my family is basically useless. They have straight up said that she is ‘mine’ to handle. They don’t call when she’s in the hospital, etc., etc. I’ve basically written them off as horrible people and being around them stresses me out. I’m pressured to ‘keep the peace’ and not tell them off for basically abandoning dear old mom (while still claiming they love her ever so much.)
I’m naturally introverted with a strong need for ‘me’ time (that often goes unfilled because of my mom.) My one very good friend just moved to another state and neither of us is good about talking online.
So basically I am without without Team Me. There’s just- me. I don’t have time to join any kind of social group. I’m really mostly okay with being alone (I’m not lonely by any means.) I’d just like someone who would pop by once in awhile and drag me out to a movie. Someone’s whose company would break up the cycle of ‘take mom to this doctor’ then ‘to this other doctor’ then ‘argue with mom about what the doctors actually said.’
I was also laid off earlier this year. I worked mainly from home (because of mom), but it did help break things up a bit when I had to go into the office two or three times a week. I don’t know how I’m ever find a job that allows me that much leeway again (they were SUPER good about letting me control my schedule.) So I’m frustrated and frightened that I’m using up my savings and again could really use a Team Me pressure valve.
So how does one put together Team Me when you’re starting absolutely from scratch?
As a bonus question, I would LOVE LOVE LOVE to tell off my siblings at mom’s eventual funeral. I even have the eulogy all planned out. It won’t be a big scene, just a little stinger at the end about having no regrets but that they should. It isn’t worth the upset to her confronting them while she’s alive. But once she’s gone- it’s mean and nasty and bitter, but I really want to get that jab in before cutting off all relations. Or maybe write them a letter expressing my anger. Would that come under closure, or just cruelty for the sake of it?
Wow. Taking care of an ailing loved one with no support from the rest of your family, no local friend-network to hang out with for relief, and not even the outlet of working outside the home to give you a change of scenery and company – I don’t care how introverted and emotionally self-sufficient you are by nature, that’s tough. Yes, you do need to beef up Team You!
The first person I think you need to get more squarely on Team You is you, though. Yes, I know you’re trying! But your mother only has so much time left in this world, and she is miserable, or in pain, or scared, or all of the above, so I’m guessing it feels selfish to rank anything you might want or need above anything she might want or need. Which would explain why you feel you “can’t” take time to yourself or join any kind of social group. Even though she actually would be ok for the couple of hours you were gone. Even if taking it would make the difference between miserable vs ok for you, and no discernible difference for her.
Which means your first job is to remind yourself that the reason your mom deserves kindness is that she is a decent human being going through a really hard time. And that you are likewise a decent human being going through a really hard time. Seriously – look at yourself from the outside, as if you were a friend of yours. The person who’s going through that, handling it as well as you are, deserves some TLC, right? And if at the moment the person who is in the best/only position to be kind to you is you, well, that means you need to do that. If something would make a profound difference to you without severely impacting her overall quality of life, being on Team You means you need to get on that!!!
To start, schedule some quality time with the founding member of Team You. If you used to go to your workplace two or three times a week, presumably for a few hours at a time, and now you don’t, unless your mother’s condition has deteriorated so she now requires constant attendance, that means you can take that time for yourself. Which opens up all kinds of possibilities! Start small, if need be. Take half an hour or an hour at a time and get out of the house/apartment. Go for a walk around the block or down the lane and back. Go to the library or a café/diner, shoot hoops, wander an art gallery or consignment shop, volunteer your services to an animal shelter as dog walker, sit on a park bench and knit… I don’t know your tastes or your environment. But do something outside the home every single day. Break the energy-sapping inertia of the sick-room. Re-connect with yourself as someone other than a caregiver, someone who has her/his own wants and needs and should. Do it casually if that works best for you, but if you find it falls by the wayside more than once or twice, make daily, scheduled appointments with yourself and make them as sacrosanct as your mother’s doctor’s appointments.
Another person you might try getting on Team You? Your mother. She is, for reasons that make sense to her, willing to accept a great deal less from the rest of the family than what she is getting from you. That being so, would she not accept less than 100% of every last drop of blood, sweat and tears you can possibly wring from your life on her behalf? Perhaps if you told her that you’re going stir crazy and you need to get out a bit, but you have a really hard time leaving her, you could enlist her support to say “Go ahead, honey, I’ll be fine. No, I insist. I love you and your happiness matters.” Literally, tell her you need to hear her say that. Every single day at the appointed hour.
Next in terms of assembling Team You might be a therapist. Therapy isn’t just for people who have lifelong label-wearing mental health conditions. It’s also for people who need help working through some of life’s challenges and the way those wreak havoc on the spirit. Say, someone whose day-to-day world has shrunk to one other person, who is dying… Who feels anger and resentment at being abandoned by the rest of their family… Who is guiltily worried about whether his/her resources will last as long as his/her mother’s life and about getting back on track professionally when he/she is free to re-enter the workforce… Who has the heartbreaking conflict that I’m pretty sure most caregivers feel when a loved one is terminally ill: wanting their loved one to live but wanting the suffering to be over and wanting to be free to get on with their own lives. Who finds it difficult to assert her/his own real, legitimate needs in the context of Terminally Ill Mother. Here is a post on how to locate low-cost mental health care in the U.S. and Canada. If you’re somewhere else, let us know and an Awkwardeer may be able to point you in the right direction.
The thing you really wanted, though? That person to drag you out to the movies every Thursday or something? That will require that you spend some of your newly reclaimed you-time researching local options to make human connections doing things you like. (And then using at least one of those options). Yoga/exercise classes at the Y? Art classes? Extension classes at a local college/university? Writer’s Group or book club at the Library? Crafting? Recreational sports leagues/clubs? If you’re in a rural area, here is a thread on connecting with people there. I’m not going to fill this post with specific suggestions because I know nothing about what you like or where you live. But no matter where you live, there are people doing something you enjoy, and that’s the best way to find a person you can hook up with for a regular Thursday movie date or something like that. You attend some sort of group or class with people who have a common interest, and when you meet people you like (after a few times) you ask them if they want to go for coffee after class sometime. Yeah, it’s almost as squirmy asking a friend-prospect out as a romantic prospect, but that’s what you do.
Another option is connecting on-line. I personally am not qualified to be your guide for how to use the internet to make local social connections, but I gather one can use OKCupid and such not just to find romantic/sexual partners, but to explore friendships, and that there are interest-oriented sites that connect up people who want to go do whatever-the-thing-is with a fellow enthusiast. [Commentariat, by all means chime in here]. Or perhaps a friend on-line can be your date? You could make a regular date to play a game online, or to chat online.
There’s also the rest of your family. I know – you’ve said they’re useless and horrible and you’re looking forward to writing them off as soon as you are not constrained by your mother’s wishes. However, I can imagine even loving family members breathing huge sighs of relief when the crisis arose and you stepped up, so they knew your mother would be cared for without their lives being disrupted. You feeling good about being the one who stepped up, them feeling grateful that you were able to do that but guilty at the same time and therefore avoidant, because people don’t like feeling bad and unfortunately instead of fixing that by behaving in a way that would entitle them to feel good they often just avoid the person/subject that makes them feel bad. You becoming the expert on what your mom needs, having been the one who goes to the doctors’ appointments and listened to her concerns at length. Differences of opinion, in which they felt like you didn’t respect their input (’cause you didn’t! ’cause they hadn’t a clue!), and them using that as further reason/excuse to throw their hands in the air and leave it all to you. You increasingly resenting that what should be a shared burden had somehow become your problem, them feeling your resentment and becoming even more avoidant. Disagreements becoming rifts. (“Fine! She’s all yours!” — “Good! ’cause you’re all such selfish shitheels I wouldn’t trust you with my goldfish, much less my mother!”)
That (or anything like it) may not describe how things came to this pass, of course. There are also families filled with truly shitty, inherently self-centered people. Maybe your siblings/other relatives have always been this way. Your mother’s willingness to let them off the hook may be one of those ghastly sexist things where everybody expects the girl-child (or one unmarried/childless person)(or oldest, or youngest) to do the caregiving while the others get a free ride. I dunno.
The why matters mainly because it’s possible that at least some of the individual members of your “they” have legitimate reasons (like jobs/spouses/kids/their own huge problems you don’t happen to know about) that made coming to your mum’s rescue the way you have genuinely not feasible. (It’s irrelevant to the “bonus question”). If you distinguish between individual members of your “they,” you may be able to identify more helpful, less avoidant people who, while not up to the challenge of day-to-day caregiving, might be willing to, say, come for a weekend every now and again so you could go visit your BFF who moved away. Or to do some online research and make some phone calls to elder care/hospice agencies/organizations in your area to figure out what kinds of resources are available to provide respite care now, or may become available as your mother’s condition deteriorates. (Yes, you can do that for yourself, too… It’s another potential branch of Team You…but wouldn’t it be great if someone else took the laboring oar)? Or maybe they can chip in to pay a house cleaner, or paid nurse/respite care provider, if that’s what you need to get away. Sometimes people who go all dysfunctional in a crisis can nevertheless be useful if given specific tasks. (Sort of the B Team of Team You — not emotionally supportive, not creatively helpful, but potentially useful nonetheless). But none of that is possible if you have blanket-demonized your whole extended family. That conversation might go like this: “I know we’ve exchanged harsh words about what I’ve seen as you abandoning Mom, but I’m not calling about that. I’ve realized that’s between the two of you. If she’s ok with you, it’s not my place to criticize. But it is my place to say this is killing me! I was coping for a while, but it’s just too much for me to do alone anymore, and this is what I need: ___________.”
For the bonus question: Do not use the funeral to vent your spleen, no matter how justified your ill-feelings are. The funeral is about your mother, not you. Using it as a platform for your resentment would not vindicate you, it would only alienate every person who heard you do it, or heard about it later. There’s even a chance you would come to regret it, as you healed from this period and wanted to reconnect with family (maybe 20 years from now!), but that’s the kind of thing people tend to find unforgiveable. Ever. I would recommend waiting a while — 6 months to a year — after your mother’s death to see if you can forgive them or at least move on without a bitter letter. If you can’t (even with aid of a therapist?), write the letter. But before you send it (as always when contemplating verbal thermonuclear warfare), ask yourself: what am I hoping to accomplish? Is this letter likely to actually achieve that, or just perpetuate more anger and ill-feeling? Will I really feel better, by making them feel worse when it’s too late to change anything?
Finally (it always feels weird when the answer is so much longer than the letter) not that you asked, but you might want to see if your former employer would be interested in hiring you as an independent contractor. They are already comfortable with you working mostly remotely, they know you, and sometimes having someone working on an hourly, as-needed basis without benefits or commitment helps an employer deal with fluctuations in workload, or where they have more work than their regular employees can handle but not enough to justify hiring an additional employee (even part time). And it can position you to be the one they go to when work picks up again and they want to hire. At the very least it would help keep you engaged and looking current, future-resume-wise.
Good luck to you! People like you, who step up, are awesome, but you should not have to be anyone’s whole Team, and especially not without a Team of your own.
CaptainAwkward.com 
Hi LW,
Wow, you are awesome, and maybe drowning? You may have already done this, so please forgive me if that’s the case, but there may be low-cost or even free home-health nurses or respite care for your mom. It might feel like you’re too busy to even make the call(s) it would take to find out, but I strongly encourage you to see what’s out there. Also, if your mom becomes terminal, I cannot say enough good things about hospice! Hospice nurses and volunteers will be on Team YOU as well as on team mom when the time comes. It will be a matter of getting a doctor to agree that it looks like she has 6 months or less to live, even though quite a few people on hospice care do live longer than that. I don’t want to sound morbid, and hospice may be far out for you and your mom, but even before that point, do please see what professional resources might be available to you so that you could go out for a bit as the captain suggested, but feel that your mom is being cared for. Your mom’s primary care doc or your primary care doc are probably good places to start to get hooked up to the resources in your area.
Good luck! You’re awesome!
Hospice is AMAZING. I wish all branches of medicine were as aware of patients as *human beings* as hospice care is.
Hospice YES YES! They are very good at supporting the patient and supporting the caregivers as well. They can be sort of end of life coaches. Best of luck to you.
I’m nth-ing the vote for hospice care. They are amazing and compassionate to all involved. They really do help ease the transition for everyone!
Hospices may also provide a day centre where they take individuals in for the day time only, allowing you the day off. It may be weekly or a couple of times a week or whatever. The hospice where my Mum works also provides ‘care in the community’ where they come to you and help with whatever, like meds or personal hygiene etc. And here in the UK at least, it’s a charity so all you have to do is get your name on the waiting list or get a referral from your GP/hospital.
Finally, hospices don’t just provide care for the imminently terminally ill people. They help people with things like MS or motor neurone disease or Parkinson’s where the disease progresses more slowly or unpredictably.
All the best LW, in this stressful situation.
A social worker who specializes in geriatrics may be a good place to start, if the LW does not have one already.
I really Really advise against doing the snarky funeral eulogy thing. Take the high road.
Seconded. Feel free to fantasize about it all you want, but don’t go there. It won’t help you feel better, and there are innocent bystanders who don’t need to get dragged into this.
Sometimes there are support groups for caregivers. Check online – a group in your area that you can go to (and it is worth making time for) is best, but online communities can be incredibly supportive as well. Check with your mom’s docs; they might know of something.
I’m with PBnoJ on the snark. Your family will not respond with sudden regret and apologies for how they have treated you.
“I’m with PBnoJ on the snark. Your family will not respond with sudden regret and apologies for how they have treated you.”
Me too. And even if they did respond with regret, it will be the faux variety complete with “We had no idea you felt that way” disclaimers. I know full well how good it would feel to get it off your chest. Take the high road, honor your Mom’s memory at her funeral.
Then write out the most angry, stinging, sarcastic vent they fully deserve that your awesomeness can come up with, print it out and burn it on your Mom’s grave as an offering. If that isn’t fully satisfying, then take out an anonymous blog and post it there. If you’re still itching to tell them off, send them an email with a link to the blog.
Or just write it all out, read it a couple of times, then delete it after a week.
Major ditto to the support group. It can seem like you’re spending even more time on Mom, but give it a shot: you’ll likely be able to connect, even one-on-one if that’s more comfortable, to people who understand your situation.
Also check with the local churches. They often have support groups meet in their spaces, and if they don’t they probably have an idea where to at least check for one.
Totally second the caregiver support group. Most likely your mom’s doctor can refer you to a local one, or you can just find it online. Therapy for you is good, but in this case the support group is more important. If only because they’ll have practical suggestions to solve your concrete problems.
But you should also give careful thought to what CA says about the rest of the family. Don’t get yourself into a corner where the only person you’re willing to talk to is about to die, that’s really not very healthy. Consider also that you need to facilitate her communication with the rest of her family, as standing guard over an older person is not a good way to take care of them. Part of a caregiver’s duty is making sure the caree does not get isolated, being kept alive is not enough. So make sure you bring her the phone and if necessary dial it for her on a regular basis. Consider sending out a regular newsletter (weekly? at least monthly) to the entire family about what’s happening, physically and mentally, about her. You may include a short list of concrete things that’d be helpful to both of you (“can someone arrange to get the washer fixed?” “how about researching possible drug interactions online?”). Do your side, and you may be surprised at what comes up.
I would not do the snarky eulogy either.
I strongy support the sugestion for Hospice, assuming your mom qualifies. If she doesn’t (yet)) many other hospitals, and churches and community organizations offer “caregiver support”. I get that you are not a big extrovert and may not love the whole support group vibe, but I want to encourage you to visit a couple support groups. Just go check them out, you don’t have to talk a lot if you don’t want to. You may meet someone in a similar situation who you could spend some time with.
I wonder if any of your former co wokers are intersted in being friends, now that you no longer work there. I’m sure they wonder about you. Your situation probably seems overwhelming to other people, but those who already know you might really enjoy meeting up for a movie and ice cream or something.
You are taking care of a really tough situation here, LW. It’s important to take good care of yourself. Good luck.
All great advice!!
In addition- since you said issues were mental, I’d strongly advise you to see if you can find a specialist in geriatric psychiatry. I was in exactly the same boat as you with the family, and as CA predicted, they have all more or less slunk off in embarrassment of their neglect of my Mom. It is very hard feeling like you are losing both a parent and your siblings. All the more reason to get to work on Team You.
My Mom had Alzheimers and geriatric psychiatrists made a HUGE difference in the level of care, planning, and ease of finding support and resources. They are expert in untangling the whole physical /mental connection to make sure she is getting the absolute best combo of meds and total package and plan for care.
I can’t tell you what a huge relief it was to know her care was in the best hands possible. My Mom, a life long depressive, was put on Prozac because I could not get her to leave the house at all and it was so depressing. What followed was literally the best times I had ever spent with her. Amazing. I learned that while I couldn’t convince her to do one damn thing for herself, she was remarkably open to my suggestions if I framed them as best for me. I had to learn to honestly talk about the burden of it all with her and enlist her as an ally in cutting me a break. I also learned that at some point, I did have to take the reins and make key decisions for my Mom. This was actually much more of a relief for her (and me) than I could ever imagine.
A good geriatric psychiatrist can help YOU take care of yourself because they know the primary caregiver is a very stressful and confusing role, and it’s key to support them as well as the sick parent. They are expert in all the end of life planning and screwed up family dynamics that go along with care of an aging parent. They know all the best resources also, so even one visit can be super helpful.
Seconding the geriatric psychiatrist option, if applicable! Can be super helpful!
I definitely advise against delivering the smackdown in a eulogy, even if it’s richly deserved. When my husband’s grandfather died, he said something at the funeral to the effect of “When I was a kid, I hated Grandpa and thought he was mean, BUT later in life I got to know him better and stopped feeling that way, and I’m glad we were able to have a good relationship.” The first part of the message overshadowed the second part, and everyone was outraged, to the point where some people on that side of the family weren’t speaking to him for a while – even though everyone knew perfectly well that Grandpa had, in fact, been a real jerk in his day.
I’m a caregiver right now myself, and I wanted to send Jedi hugs to the LW, if they want them. I know exactly how you feel and what you are going through. My partner developed a chronic illness shortly after we moved across the country, so I was without much of a local Team Me as I found turning into a caregiver. I remember talking to one of my friends over Skype, and they compared my situation to that of a single parent – entirely responsible for myself and someone else’s needs, 24-7.
I wanted to nth the support group suggestion – I’m pretty much an introvert myself, and yes, need a lot of alone time. Unfortunately, in my current caretaking situation, it sometimes leads to self-imposed exile from the rest of the world, and I can drown in the loss of identity that comes with an overwhelming caretaking type situation. Human contact, in the form of support groups, really helps me remember that I am more than someone’s combined cook/laundress/housekeeper/medicine dispenser/medical researcher/driver/calendar/errand-gopher/etc. And it also helps me remember that I do deserve to have my needs met and to be happy in the best way I know how in my situation.
And the people in the group will understand what you are going through, down to the medical shorthand you are probably picking up. If you are in the US – the Family Caregiver Alliance (http://www.caregiver.org/caregiver/jsp/home.jsp) can help you find one.
Another note I’ll make, and you may have already done this, is to have a series of talks with your mom, and eventually her doctors, about end-of-life care, and suggest that she make a living will. These talks can be really hard and very emotional, but when the time comes, you will feel so much better for knowing what your moms wants. And you won’t have to worry about such future decisions as you cope with day-to-day stuff . End-of-life care is much more complicated than most people realize – for example, in the US, a tracheotomy is considered an extreme measure. Secondly, sometimes absent family members can really come out of the woodwork at the end of someone’s life, which can be both helpful and unhelpful. You want to have in writing what your moms wants, so if any family awfulness rears its ugly head, there’s no argument, or at least, less of one. And no one can accuse of you of not having your mom’s best interests in mind.
Good luck, from one caretaker to another.
Wise words there about end of life care.. Check out http://www.starttheconversationvt.org/
For meeting people I also recommend Meetup.com.
Adding to the “ask your family for specific things” suggestion, might it be worth approaching them for financial support? Without you, they’d either have to pay a pro or do the caretaking themselves, and if you’re doing this full time, why should you be the only family member whose savings are being drained towards caretaking for your mother?
LW, I get that you’re pissed as hell about your family. I don’t know them, so I don’t know if what I’m about to say is going to be useful, because there are the people who are selfish assholes all the time, and the people who are just selfish and then defensive because they had to make a choice that was right for them. Maybe even without this you’d never want to talk to these people ever again… but in case things might be different in different circumstances (like if there weren’t a seriously ill parent to play Hot Potato with), here’s something to think about.
Anger is a hard-shelled emotion. It’s about your most logical and socially-approved bits going at somebody else’s softer sides. Its purpose is to drive people away because they are hurting you. Being angry at someone engenders exactly zero closeness.
What happens when you take the shell off anger? You get overwhelming sadness.When you talk purely about what you felt, acknowledging how you thought people felt and acted, but never assuming you know, you end up with stuff that nobody can argue with. They can’t say, “No, you never felt that way.”
Underneath “I am angry that nobody helped” is usually “I am sad and hurt that I was all alone.” And if you’re able to get people to acknowledge that fact–not some judgment about them, but the fact that, in response to their actions, you felt abandoned and like nobody thought you were worth helping. That’s a whole different conversation.
This is an absolutely amazing viewpoint about anger, and so incredibly useful (even though I’m NOT seething at anyone in my family). I am saving these words for sometime when I do need them. Beautifully said.
And if you really do want to hurt them, LW, making them acknowledge what you felt as a result of their actions is going to hurt them more than any eulogy jab ever could. A eulogy jab will only make them hate you; seeing your pain will make them ashamed. And I’d say they probably deserve that. Since it’s pretty much their fault and they need to make amends if they ever want even a passing relationship with you again.
I was going through this a couple of years ago when my mom’s Alzheimers got really bad. I did have a Team Me, and I’m an only child so there were no slacker siblings to be pissed off at. But it was still overwhelming. Here are things I did that helped:
Wrote a lot about it in my online journal. Getting e-hugs and especially reinforcement that I was doing a good job and doing all that I could was important.
Spent some time reading an online support group for caregivers for people with Alzheimers. That helped because they had all experienced things my mom and I were going through, so I didn’t feel so alone with it, and they had lots of good advice.
Made a “singing” playlist. Singing along with songs I liked helped me feel my feelings in a way that felt safe.
Gave myself permission to play mindless computer games as one of my forms of downtime.
I know in Australia Carers Australia (and their state groups) can help a lot in this situation. If you’re not in Aus there is bound to be a national peek body for carers that you can connect with.
http://www.carersaustralia.com.au/
http://www.carers.org/
Also look for non-profits that work with the ederly, and those with mental illness. Some may have respite or companion programs that you/your mother can access.
GROW is an international group that organises peer-led support groups for all kinds of mental illness, as well as support groups for those who have a family member with a mental illness.
http://www.grow.net.au/
http://www.growinamerica.org/
Have you investigated carer payments that are available from your government? You might not qualify for much, but it could be enough to at least cover transport expenses for doctor appointments.
http://www.humanservices.gov.au/customer/services/centrelink/carer-allowance
https://www.gov.uk/carers-allowance/overview
http://www.welfare.ie/EN/Publications/SW41/Pages/1WhatisCarersAllowance.aspx
I second the idea of looking at meetup.com and you can also search Facebook for social groups in your area. I know there is a “wingwomen” group for my city and it is just a private group for women looking for other women to do coffee/go to the movies/exercise together etc. Individuals post a comment about an event or activity they would like to do and if others in the group are interested they organise a meet.
If your family use Facebook, you can set up a private group for family members only. This would be a very easy way to keep them up-to-date with your mum’s progress. It is also a non-confrontational way of telling them how much caring for your mother is impacting your life. This means that when you do ask individuals for specific assistance, they have some context for your request (IMO they should just give it anyway, but that’s just me).
My family uses a private group to organise everything from birthdays to who is visiting our grandmother while our mum is on holidays (My mum is very much in your situation).
Hopefully some of that ^^^ is useful. If not to the LW than to others in similar circumstances.
What you are doing is super hard. I am proud of you for doing hard things!
Team You, in my experience, is formed of friends and acquaintances who have some extra bandwidth in their lives when you are in need. While you might feel that you don’t actually have anyone but your best friend who moved away, I suspect you probably know more humans by name than you think.
A lot of those humans (former coworkers? people from school? people your mom went to church with?) may not know or really understand what you’re going through. Some of them won’t be local, and a lot of them won’t know what they can do to help.
Since you don’t have a natural upwelling of support coming from your community, you have to ask for it. Tell the people you know what you are going through. Have specific things you can ask for, and don’t be shy about asking. When someone you have seen more than a couple of times (and you know their name and maybe some facts about them) gives you sadface about what you and your mom are going through, you can say yeah, you just wish someone would drop off a casserole once in a while, you know?
Most of the random people you meet won’t be interested in helping someone they don’t know very well, but some people are. Some people might say they’ll help and then not do it, so you have to regard these asks as more of a Specific Wish You Make Of The Universe, Uttered Near Someone Who Might Help.
If it’s someone you know better, someone you’ve known for a few years, you can come right out and say you would really appreciate it if they would have a ten minute phone call with you every Thursday night, or whatever. People your mom knows can be asked to help, too.
Unfortunately, a lot of this comes down to “Right now, Team You is kind of about pretending your Not An Introvert.” Does your friend who moved away have a network of friends who are still local? You might be able to hijack her goodwill among them.
Whatever else happens, we’re pulling for you! You’re doing the hard, painful, gritty work of life and family and dying and grief. I respect you so hard for that.
Also, you might consider hiring a Patient Advocate, or Professional Patient Advocate, or consulting with one. that is basically a person whose job it is to do what you’re doing now, with all the appointments and everything. My friend is remote to her ill parent, and has money, so it’s a different situation, but a person with that professional experience may have concentrated knowledge about your local community and resources.
I also care for an elderly relative and one of the ways I’ve found to get downtime is to walk down to my local shops in the morning for some groceries and pop into a local cafe for a coffee. It was only an hour but getting out of the house is really helpful.
Good luck with everything. Caring is difficult but rewarding. Would also back up what others have said about being clear to your family about what they can and can’t do. For example, my sister as a Christmas present to me promised my partner and I that the first friday of each month she would come over so we could go out on a date-night. Its just a little thing that helps keep us all sane.
Also, please don’t blow up at your relatives at your mother’s funeral. Like people above have said, that day is not about you and your relatives, its about celebrating your mother’s life.
The comments section here is always like an intravenous injection of Team You. Y’all are so compassionate and helpful–I just have to say how fantastic you are.
One of my great sources of Team Me has been an online community I discovered through fandom (originally through Buffy the Vampire Slayer fandom). When I moved to an area and job where it was horrendously difficult to make friends who had time for anyone they hadn’t known for 30 years, it was my portable group of fandom friends who kept me from breaking down into a ball of misery until I did find the people in my town who were in-person Team Me. Not everyone is wired for that kind of fannishness about a TV show, but the places where people with common interests can meet and squee are numerous.
My mother did a lot for my grandmother when she was dying of Alzheimer’s. I watched a lot of people disappear from her life after my grandfather died, etc etc.
It’s easy to be resentful for having all this on you, and as I watched my mother I was pretty pissed. However, eventually what I realized is that some people just don’t have the resources to deal. It IS really difficult, and not everyone can be so fucking tough and awesome and you should try not to forget that. It’s shitty as hell but you should feel so proud. That’s not to take away from the overwhelming aspects.
Perhaps you can come up with some concrete ways for family to help? From your letter I’m not sure if family’s in the same town, but “Here’s a grocery list” or “Shovel the driveway” or whatever might help you out and is maybe a set task they could cope with now and then.
I concur about looking for a caregiver’s group. I’m also unsure from your letter — does your mother have her own source of income/insurance/etc? If so, you can definitely get personal support workers in for a few hours during the week to help out. It can be nice for your mother too, to have another friendly face around to chat with.
Long before her diagnosis, my grandmother made it known that she wanted to be put in a nursing home should the need arise. By the time that was necessary, she didn’t know that’s what she wanted and it was really scary and horrible for her. My mom felt terrible and guilty about it, but it was the right choice. Nursing homes aren’t necessarily pits of despair, if that might be possibly financially possible too.
We’re all rooting for you, LW. Don’t forget that you have two people to take care of.
Hey, I just wanted to add my support for you, LW, and an odd suggestion.
Does your mother have friends or acquaintances whom you might be able to draw upon? When my grandmother was ill, her friends from when she volunteered at a children’s rehab facility were awesome. When my grandma was eating nothing but chinese-food-place chicken broth and applesauce, one of those friends made a giant batch of chinese-style chicken broth, and brought it to us. It might be awkward, approaching them, but if these are friends’ of your mother’s, they’d probably appreciate your consideration in allowing them to be a part of this.
If nothing else, they may be able to visit you and your mom, and they can sit and talk with her while you do something else- when people did this, I was able to get out of the house, and while I was also pretty isolated socially, just being able to go and get a coffee and read and do things that had nothing to do with caretaking were really valuable.
As others have said, taking the time to talk with your mom, and her primary doctor, about end-of-life plans, and the potential for hospice, can be extremely valuable. The folks at hospice are awesome, and can bring all sorts of resources to the table, that you might not even realize would be helpful. They can get you free equipment rentals, and Nurse’s Aids, to come and take care of your mom for a few hours a week, and home visits (instead of traveling to offices constantly) from nurses who can help you monitor and adjust your mother’s care. And they can advise you on respite care, and arrange all of it for you.
Good Luck.
Nothin’ odd about that excellent suggestion!
This is a great idea. My grandmother is an octogenarian who lives alone and is in relatively good health. We worried about her getting lonely, so we called all her friends and asked if they could make sure to call her 1, 2, or 3x a week, giving each of them a specific number. My mom calls or drops by every day; I call once a week as does my sister. Other family members have a similar schedule. If you asked her if she was lonely, I’m sure she’d say no. I think giving everyone a clearly defined goal of “call x times per week” rather than “call more often” worked out great. And her friends turned out to be a great resource.
The bonus good that came out of this situation is that one of her friends was slowly developing dementia. My grandmother was the first to notice because her friend would call multiple times a day and repeat everything she said before as if she hadn’t said it. My grandmother was the one who called her out-of-town relatives and let them know to look in on their aunt and she got the care she needed.
I don’t know why this seems to be writing in bold – I didn’t pick it. That said …
Do not blow up at your relatives at your mom’s funeral.
I am the oldest of six. My mom was both abusive and neglectful. For example, because I wasted half a bowl of corn flakes she said I couldn’t have breakfast for 1.5 years – and enforced that. She pushed my oldest brother (2 years younger than me) down the stairs and she would hit me if I wouldn’t do her homework. She turned a blind eye to my dad molesting me, and frankly, I can’t stand her.
When I was 30 she adopted two babies. She had remarried and gotten a good job and her life was improving. In the month, total, that I’ve seen her in the 20 years since I’ve left home I have to admit that she’s calmer and less mean, but she still manages to say incredibly painful things to me whenever I visit. My oldest brother didn’t visit her for 14 years, but recently he’s rejoined the family.
The two youngest siblings know nothing about this. They’re 8, and we adult siblings aren’t sharing. Their dad is good to them, he’s been a good influence on Mom, and nothing is going on that I could report to CPS. I’ve checked. However, they’re still very poor and Mom’s going to be 70 when they graduate from high school. Because Mom’s natural-born kids are so much older and are pretty alienated from my mom, it is undoubtedly going to be up to the adopted kids to care for her when she declines and dies. They will have more emotional connection.
I anticipate that they’re going to be pretty upset about having to do all the work. I have no intention of caring for my mom as she dies – she forced me to care for her, for my siblings, and for my dad physically, emotionally, and financially when I was a kid and I’m all burned out on that. This decision is me forming a boundary and taking care of myself, and my Team Me (including my therapist) is totally supportive of my decision. But my adopted siblings won’t understand why I won’t help because I am not telling them anything about what she did until they’re at least 30 years old. They wouldn’t understand or be emotionally ready to deal with having been raised by a monster. But I will be there for them in a different way – I should be able to financially help them with college or jump-starting a career. It’s not their fault they were adopted into my family.
So. Maybe your family is honest-to-god horrid and somehow only you and your mother escaped the family curse. Or maybe your family refuses to help for a reason and they just don’t want to or can’t tell you what it is. But don’t snark at them. If they’re at a funeral to bury someone who hurt them very much and you snark at them, they’re just going to transfer that over to you – and you will look bad to all the people who are not family as well.
Sarah, while your instinct to not spill the beans is sound on the whole, I’m not sure you may not have to shorten your time span here, because of your mother’s age and physical condition. The kids are still a bit young, but I think about 12 or so you can start dropping hints like “I have a very difficult relationship with your mother, for past reasons I don’t want to go into now. But be assured that I love -you-, and want all the best for you, and will be here to help you into adulthood. Our siblinghood is a separate matter to me from my problems with our common parent”. Then you’re setting the stage for future revelations, without getting into gory details or burdening the teen with revelations about someone they have to live with for another while. I don’t think keeping secrets totally is a good thing, as you’d just be establishing yourself as a person who can’t entirely be trusted with being fully honest.
Also, both my younger sisters grew up with intense anxiety about their mothers’ health, and whether they’d even be able to finish high school for financial reasons. I’m really sorry in retrospect I didn’t make it clear that even though I wasn’t physically present I was watching over them from afar, and could be counted on if they found themselves alone. Don’t let that happen to your siblings.
Sarah, if you cannot help out physically when/if your mother declines (and I do not blame you), then perhaps you could take the resources you’d use to help your siblings with school and use it for the costs of nursing care/caregiving, etc.? Paying for school won’t help if they feel obligated to stay home and take care of your mother and forgo school. (Honestly; if it shakes out that she declines when they are teenagers, I would actually have a sisterly talk with them about how they should absolutely NOT postpone their plans to go to school, etc. and AND encourage them to go to school far enough away where they’d have to live there.)
Maybe that won’t be an issue; maybe she will be fine. Maybe she and her husband would be eligible for financial assistance that would help if she did decline. But if you want to help them and this comes up, it might be the best way to do so. It’s not so much helping your mother as it is helping your siblings, who, as you pointed out, did not ask to be adopted into your family.
Didn’t read all the comments, so hope I don’t repeat. But on the online-meeting:
Yes, okcupid is a pretty good option for meeting people also without romantical intentions. Their match system makes it really easy to connect to people with similiar interests. On a side-note, I chose not to reveal my real name or photo online, but that isn’t necessary.
A second one to consider is couchsurfing – it’s not only about finding a place to sleep anymore. At least around europe there are often open meetings where you can meet people with low-commitment . Make yourself an account and check for forum, places page & activities. Another side-note: they recently went from non-profit to being a company with ethics like facebook, but that’s nothing you’d need to care about for the moment.
I am the primary care giver of my father, he lives with me, has chronic depression, addiction to drugs and other health issues. I’m also an extreme introvert. You can make SO many awesome friends via on-line websites. Find a forum/game/whatever that is a huge passion to you (I personally am also addicted to advice columns. This site is AMAZING) and make that connection. Build that friendship and use that hour or two every day to read blogs/comment/play games as your down time. I personally take an hour long bath with a book and chocolate every single day come hell or high water. Works WONDERS. Please do that!! You deserve it because you are AWESOME.
Does/Did your mom belong to a church? When my mom initially fell ill her church and my (religious) high school were SO helpful, bringing over meals and things like that. There are still a number of people from both places that help my Dad out with caring for her. Anyway that might be a place you could look for more of a “Team Your Mom” who would be able to bail you out from time to time by coming for a visit so you could get away.
It is so hard to watch someone that raised you fade mentally. My family tends to take a “laugh about it so we don’t cry” approach because it is just to hard to even really process how bad things are. You need to take care of yourself, what you’re doing is hard in so many different ways. I hope the captain’s excellent advice helps you. *jedihugsfromme*
(Oh and if you wanted to try an interesting dating site, http://www.howaboutwe.com is an interesting activity focused thing. I don’t know if they have a platonic section though.)
Wow. Had a hard time reading through this. Had to stop part-way through what I’m sure is an incredible response.
I went through much of the same when my mother developed early onset Alzheimer’s. It was a year and a half ago and very sudden. One of the few times I thought I could get away for a bit…she was having a good day, and I hadn’t seen my boyfriend for weeks as I had begun staying with her (because I was afraid of her being left alone for any length of time…she didn’t even recognize her own house as being hers anymore)..anyway. Bf and I went to dinner just a couple streets away. I made sure she was fine before I left. She’d eaten. I put on the TV for her to watch. And before our meals came out, I was bawling in the middle of the restaurant because she’d just called talking about aliens abducting her and alarms in the house.
The biggest reason I wanted to reply…Like I said, I didn’t make it through the response, so it might’ve already been said. But…it’s a little costly, but there are homes that do “respite stays”…they’ll take your loved one for a week or two to let you regain some sanity.
For myself, a lot of it was finding the strength to allow myself…rather, FORCE myself to do something for me. It was always really hard to do so, but priceless when I did. I always came back with more energy to keep going. But here are some internet hugs for you.
What’s in your budget for paid help? In the past, my boyfriend and I have had some success in the past hiring college students or other people who are looking for part-time work. Lots of folks have taken care of their own elderly parents and are delighted at the opportunity to earn a little extra income using the skills they picked up during that time. They may also be willing to work relatively cheap if they have informal experience, but no prior paid experience.
If your mom has specific medical needs that a paid caregiver would need to deal with, that’s more expensive … but possibly still doable if you only hire somebody once a week/month/when you really need it for respite.
Good luck. Please check in and let us know how you’re doing.
Oh, LW, Jedi hugs to you, if you want them! I support the great advice people have given. It may take some digging to find a helpful combo, but there are options. (I started blogging to have a slightly different way to connect with other adults who have sibs with disabilities than the one big listserv I know about, which is good but a little out of sync with where my sister and I are right now.)
Can I tell you a bit about how I formed Team Elysia? I just moved a few months ago for work – my friends are mostly distant. (My nuclear family lives very far away and my extended family effectively checked out decades ago.) My team and I exchange postcards and care packages (including by request: “please send [crafting supply X; tasty treat Y; photos of pets]” – see also Letter #190) and have regular phone times for the non-email-inclined. They listen to my grand plans for how I would tell my extended family off about Stuff, giving me an outlet that is safe.
If you have a remote team (even just your one closest friend), don’t give up on keeping them in the loop. If you had potential friends from your workplace, as others mentioned, see what connections have lasted; they may even be able to help you find new work. (I emailed my first mentor when I was diagnosed with fibro and was about to lose my job, and she’s helped me navigate and stay calm.)
I’ve built my team recently, too, in big ways and small ways. I found doctors and a therapist who can help me stay healthy. I was super dizzy at work the other day and asked a coworker to help me get home safely. I have opened up to less-close friends who *could* be close about what’s going on (with my sister, with my own health, etc.). There’s a place I’ve been going to get breakfast a lot recently, and it’s weirdly reassuring to have the staff recognize me, smile, and know what my order will be, even if they don’t know my name.
Best of luck to you! You’re *so* not alone in being a caretaker who isn’t getting the support you need, and that you’re looking for support is huge and great self-care, and I hope that knowledge helps.
Hello, Letter Writer here…
Thank you all SO MUCH for your replies and compassion. As someone else said, its like an IV shot of Team Me.
I wanted to clarify a few things (And I’m not sure if this is the best way to do so, or if I should respond individually to people? I don’t know the etiquette here.)
While my mom has serious health problems, she isn’t terminal and is in fact rather young (67). One of the things that scares me (and this will sound terrible) is that I may be left in this situation without Team Me for possibly ten or fifteen more years. In reality, I have been in the caretaker role since I was 13. She suffered brain damage in an accident, which she did recover from over the course of several years. Since then, she has had numerous operations and health issues (spinal fusion, surgery on hands and feet, hysterectomy, etc.) I am indeed the youngest and the only one unmarried, so it was very easy for me to slide into this role and get ‘stuck’ there.
Complicating the whole situation is my mother’s response to it. Part of her condition is serious shot term memory loss and emotional issues. (In many ways, I feel like I’ve gone back in time to when she was hit on the head.) She is aware of her memory loss and it makes her very defensive. Instead of trusting me as to what the doctor said or what needs to be done next, she insists on arguing about it. Admitting she can’t remember or is remembering things wrong would mean admitting there’s a real problem.
It also isn’t as simple as writing a script. Trust me, I’ve got great scripts! Like “Mom, I understand you’re afraid and anxious about your memory. Taking that fear out on me is not productive. If you want me to continue helping you with your doctor’s appointments and medications, I need you to trust me.”
And this WILL work…until an hour later when she forgets we ever had that conversation.
She also feels very guilty about needing a caregiver and this also makes her defensive. If I make any mention of the fact that I do indeed take care of her, she insists I only stay with her to save money (despite the fact that it has severely limited my career opportunities and cost me my dream job because it would have meant moving across country.) Respite care or a paid nurse isn’t possible because mom can’t admit she had declined to that point. This basically removes my ‘leverage’ in some ways.
My goal this year is to convince her to get therapy to help deal with her fear over her mental decline. I’ve tried in the past and she’s been very resistant. Sometimes I can get her to agree, only for her to later insist she never did (and insist ‘contracts’ with her signature were forged.) I think at this point it simply HAS to happen. I can’t continue being in a situation where I’m expected to be the caregiver, but also to pretend it has no effects on me because she needs to believe she doesn’t *need* a caregiver. It’s very difficult when you have a person who absolutely needs help, but isn’t so far gone that you can get them ruled incompetent
With all of that said, the response is absolutely correct…I DID leave the house routinely for work reasons, and she DID survive. And she hasn’t declined significantly since. It was a real eye-opener to read that, even though I should have realized it for myself. Somehow I’d gotten it into my head that leaving the house for ‘team me’ building reasons was selfish and therefor actually impossible. Turns out it is both possible…and still selfish, but in a good way. I used to be big into tabletop gaming and I’m going to see if I can find a group in my area. If not, I’ll look into other nerdy activities.
I also solemnly swear that I will not pick up my sword at the funeral. Everyone is right…it would serve no purpose but a short-lived nasty pleasure. I will consider it, sit on it, and wait at least six months to stick it to the lot of them (Kidding! Mostly)
I think a lot of my discontent and anger is coming from a recent family wedding. When mom gets anxious, her memory problems get worse and she gets very fixated on tiny little details and turns them into BIG FAT PROBLEMS. Getting her to the wedding without a total nervous breakdown was a huge ordeal and my siblings were NOT helping. They kept doing various things to make it worse like pushing her to get her hair dyed…just things they didn’t understand would throw her into an utter tailspin. For some reason Mom can’t be mad at them, so if they got her upset she would ‘remember’ the entire incident in such a way that I orchestrated it. Even if I had no involvement whatsoever, I was getting screamed at while she was being sweet as pie to everyone else. And of course I can’t blame her because she’s ill.
(I swear, this does have a point.) So we finally make it to the wedding. It ran rather long and late and Mom held up well for the most part. Finally she decided she’s tired and wants to leave. I walked her around to say goodbye…
And the groom (my brother) asks “why are you leaving so soon?” And in that second, I realized how damn angry I was with these people. It just illustrated how little they understood…and they didn’t understand because they made a choice to turn their backs (most live within ten minutes driving distance.) All week they’d been treating her like a ‘rational’ person with a normal memory and acting surprised over and over when they discovered she’s not. This didn’t happen in a day, damn it. And “why are you leaving so soon?” Bro, you have no freaking clue what it took to get her there, period, and you’re upset she’s leaving at 10pm?
Okay, okay, okay. Sorry. I still promise no razor tongues at the funeral.
Sincerely, I am grateful beyond measure for everyone’s kind words and advice, and I do intend to take as much of it as possible. I’m thinking going to a therapist myself and raving about the experience might get mom interested in doing the same, so it could serve a dual purpose.
This year, Operation Team Me begins!
Wow, that is in a lot of ways even worse than I was imagining… Especially the gaslighting, and your siblings being close enough to be a lot more helpful but being in total denial about how bad your mother’s condition is.
Damn, do I wish you’d taken that dream job! I bet you do, too. In fact, I think you need to apply for it (and others) again. Including ones far, far away.
A trivial analogy: I was the chair of our local Conservation Commission, had been for several years (since its founding, so people couldn’t imagine the CC without me in that role). I needed to step down as chair, though, because I had taken lead on another project, and it was taking tons of time. I actually wanted to stay on the commission; we were doing important stuff, and I wanted to be part of it. I just couldn’t be #1 anymore. Telling the other commissioners that (for months and months) did no good, though. No one would step up, including the retired guy I knew would be great. Finally, I resigned from the commission altogether. And guess what? He stepped up! The Commission did not fold! They’ve continued to do great work! Slightly different emphasis from what we might have done under my leadership, but absolutely still valuable and worthwhile stuff. The moral of the story: sometimes you have to leave people in the lurch to get others to step up.
Now I know: your mom is not a commission. Emotionally, it’s going to be a LOT harder to leave your mother in the lurch. (Duh). Because yup, she and your siblings will flounder a bit while they get new systems in place. But they will manage. They will.
And you NEED to do it. Because it’s a myth that it’s fair and natural and reasonable to dump the caregiving responsibilities on the youngest one, the one without a significant other, kids, or established career making demands on your time. In fact, it’s the other way around. Having a fulfilling social and emotional life takes a lot more effort when you’re single and have to make plans every time you want to get together with anyone than when you’re in a committed, cohabitating relationship and all you have to do is go home to your significant other. Likewise, establishing yourself in your field is even harder than maintaining and progressing once established. If you are going to have those things in your life — real, loving partner-relationships, kids if you want them, work that is meaningful and rewarding to you — things that are pretty damned reasonable and normal to want — you have to have the opportunity to work toward them.
You are in a critical life-building phase of your life, and you can not afford to defer it, to wait 15 years (or even 10 or 5) to start living your life. And dear gods, if you get sucked into that a day or a year at a time, you will really, really hate and resent your mother and your siblings and yourself and the entire fucking world by the time you’re finally released from duty!!! You will be praying for your mother’s death and hating yourself for it.
In fact, you need to act NOW, when your mother actually can be left alone for hours at a time without catastrophic consequences. When you can deliberately leave her/your siblings in the lurch and know that though the transition will be bumpy, it will also be successful. Because once her condition deteriorates so that she can not safely be left, you will be (or at least feel) even more trapped.
What I suggest you do is start looking for jobs in your field without regard for your current caregiving responsibilities. Have a family meeting (not including your mom), preferably in the office of a geriatric-care social worker, family mediator, family therapist. Maybe get an Elder law attorney to attend. Get your moved-away BFF to come stand by your side, so you have an ally and reality-check when your siblings gang up and start berating you for your “selfishness.” Lead off by describing in a factual manner what your mother’s condition is like, including her memory issues and her denial. Discuss the need to get a long-term plan in place — you need things like living wills and powers of attorney set up while she’s still mentally competent. You also may want to consider nursing home insurance — because it seems pretty likely that your mom will need full time monitoring/care at some point before she dies. If you’re in the U.S., you need to discuss things like transferring assets out of her name for her to be eligibile for Medicaid (or is it Medicare? I always forget which is which) to help pay for nursing home care. (It has to be done YEARS before the person needs the care).
Put your family on notice that you are looking for work in your field, and that you will not turn down opportunities just because they conflict with your current caregiving duties. Tell them that if they have stepped up a hell of a lot, you MIGHT consider opportunities in your area, which would allow you to continue living with your mom and taking a SHARE of the hands-on caregiving. But you are absolutely done with being the solo caregiver, and if you get an opportunity outside the local area you believe you have done your share already, having taken care of your mom since you were 13, and you will take that chance to go live your life. So they might want to get a plan in place for what they’ll do.
They probably won’t. They’ll probably do the denial thing, and they’ll lay all kinds of guilt trips on you to try to lock you into the role that makes life easiest for them. They may act like you are a horrible person, and like you have forced a rift in the family if you walk away, “abandoning mom.” But that will be on THEM. You will simply say over and over to them and to yourself “I am a full fledged person. A good person. I deserve a life, too. It’s my turn.”
Because you are, you do, and it is. Now, go out and get it.
P.S., you get it, right? This is one of those things like closure, or recognition that you are a really-truly adult, as a reward for all your labor and accomplishments — the things that you can not wait around for other people to give you, that you have to seize for yourself? Your family is not going to voluntarily let you go. So you either have to seize your life for yourself, or give up on having it. You know which I vote for.
Like someone said in the other caregiver thread (it’s Cinderella week!), your family may cut you off in retaliation for you standing up for your right to have a life. But if the only terms on which you can have them in your life is if you totally sublimate your needs to their wants, well, so be it.
P.P.S., When you still think you can’t just up and go, picture if something drastic happened to you. Y’know, like aliens came and beamed you up to live on their planet where people like you are worshipped as the goddesses they are. Your family would figure something out, wouldn’t they? Yes. So, you see, you can.
Alphakitty, I don’t know why, but this comment of yours somehow moved me so much I started crying.
LW, please try very hard to do what Alphakitty suggests, it’s fantastic. I’ll be thinking of you. *Jedi hugs if you want*
Definitely similar to what a lot of Alzheimer’s families deal with. You might want to look into a support group for that — while it’s not technically applicable to you, it’s damn similar and I can imagine it could be helpful to learn about other strategies to help deal with memory loss.
About arguments over what the doctor said — can you maybe just record the whole damn appointment? Then when she says “that’s not what the doctor said!” you say “okay, here’s the tape I made, you can listen again so you can make sure I have it correct.” Ad nauseum, as necessary. I think engaging as little as possible helps minimize it — and gives her a chance to forget what she was arguing about.
It’s a bit of humouring her, but preferably without being patronizing (cause that will not help). Divert the spiral where possible.
If YOU don’t change things, they will most likely stay the same. I understand your fear and I think it’s validated. The good thing is that you have power here; you just don’t feel it yet.
I’m sorry that your mom is sick and her memory troubles make things more difficult, sure. But that doesn’t mean she shouldn’t be held accountable in some form. In fact, I’d say the more she can affect her everyday life, the better she’ll feel. I have a close friend with memory loss. His is from medication and like your mom, he gets defensive about it. Sometimes he tries to fake that he remembers things when he clearly doesn’t. It sucks. But he’s still his own person. It’s not up to me to play along. That doesn’t help anyone. In his case he uses the recording thingy on his phone or writes things down on bright Post-its. I’d bet that your mother has some options too.
What I hear your mother doing is taking her bad feelings out on you. She’s defensive, so she takes it out on you. She can’t get angry at your sibling, so she screams at you. That’s a choice. That isn’t okay just because she’s sick. You still have to live with the memories and for your relationship to work it takes trust. But she doesn’t trust you.
I agree with alphakitty’s advice that your siblings need to step up. They won’t do that until you make them.
RE: your mother not remembering what the doctors said. We had the same situation when my aunt had a stroke. First we would ask the doctors to put their orders in writing and sign it. Then we would keep the original and send a copy to her primary physician whom she trusted and had been going to for years. Anytime she wanted to get in a argument about doctor’s orders we would refer her to the written copy. Sometimes, she would still want to argue. We would have her call her primary’s office and talk to her favorite nurse. Both her primary and that nurse gave my uncle their cell phone numbers for handling these minor breakdowns on off-hours. It only took them minutes to resolve it, whereas it took family members hours to resolve. She always believed her doctor in the end.
Usually, these issues came up because she was feeling powerless and wanted to argue about something and doctor’s orders were just the topic. Resolving that one argument didn’t stop her from being generally cantankerous, but it did stop the argument from being about her prognosis and care. What helped her most with that issue was counseling.
Ooof. That sounds tough. I’ll say that with memory issues/TBI’s/any sort of dementia, you can’t really rational your way through it with the person who’s suffering with it. Talk to her doc about resources for you and for her–and still check out the Alzheimer’s Association, as they may be able to do a free care consultation for you.
And everything Alpha Kitty said.
If your siblings get shitty, point out to them that you are the one taking care of her and that you’ve been doing so since you were THIRTEEN. I’d also suggest that you tell them you are at the end of your rope, that a mountain of thank yous will not make the tired go away, and that they need to step up to the plate themselves. If that means they all chip in for a caregiver/respite/nursing home care, so be it. If they tell you that you’re being selfish, point out that you’ve been doing this and they haven’t, and that they need to point their fingers at their own reflections staring back at them in the mirror.
However, don’t let your actions hinge on their epiphany! They do not have to agree, or to have come up with their Plan B, for you to do what you need to do. They can wail and beat their chests and call you names as you walk out the door, but you will still have gotten your life back!!! Far better to have them hate you for having the audacity to reclaim your life than over some cathartic euology, don’t you think?
Agreed!
Oh friend, I feel you, I do. My Mom is also fairly young (62) and suffering from similar issues due to a major accident and the subsequent fall out (knee replacement, stroke, multiple foot surgeries.) I’m going to ramble at great length about how our family deals with my mom’s stuff in the hopes that some of it is vaguely helpful. I would also be happy to be part of your electronic team you if you want someone to vent about this with. (shinobi42 at gmail.com)
This Christmas was the Christmas of Imaginary presents. She was just so sure that she had some things for Dad and something for grandma hidden in her closet. I never did find any of that. And then Christmas day she insists she had some kind of stocking stuffers and of course no one believed her, but she actually DID have them. (I mean seriously, how are we supposed to know?) It’s really hard to walk this line between “you are an independent person who can control their own life” and “you do not know what day it is in a not at all figurative way.”
All of my family’s strategies on dealing with Mom are geared towards making her as independent as possible until she can’t be anymore. This is both selfish and for her. She can do a lot of stuff when we make her, but it is hard, and takes a lot of time. My Dad who is her primary care giver doesn’t want to do all that stuff for her, so he pushes her really hard. She actually stays home alone for sometimes a weeks or more with just people stopping in during the day or picking her up for her various activities. Usually my sister or I will go in and stay for a few days in the middle too. We worry about her being alone but she can do it, and it is good for her.
It’s possible that you are now thinking “That’s not possible because my mom has XYZ problems” but just as a thought experiment, what are the things that prevent your mom from really living alone? Are they things she could overcome with some strategies, some help? You may never get to a point where she could be totally independent again, but I think making that a potential goal, rather than seeing this as a long term care situation might be a helpful mindset for both of you. The more stuff she can do on her own the better she will feel and the better you will feel. It’s SO SO SO easy to get into this pattern of doing stuff for them, but until they really can’t do it, it is better to make them do it themselves.
(Example, My mom can totally put on her leg brace and tie her shoes without my help. She can also put on her own bra. SHE CAN she dresses herself alone quite frequently. But when I was home for Christmas she asked me to help her with this every day, up to and including a hilarious scene involving me losing my towel while trying to fasten her bra in the hallway. She really doesn’t need my help, but it is easier for her if she gets it.)
What kind of stuff does your Mom do with her time? I ask this because something that’s really helped my Mom with her brain damage related depression and subsequent orneriness, is having a routine of outside of the house things she does on her own. She goes to the gym three or four times a week,(water aerobics) is in a book club, and gets regular mani-pedis. Does she have stuff like that? Could your family members take over being “in charge” of getting her to activity XYZ? Could going to the therapist just become part of the routine? These would give your family members a chance to deal with her issues first hand as part of a regular schedule, it would give you some free time, and it might help your Mom feel less totally dependent on you and resentful of said dependence.
I’ve been pushing for a while to send my mom to a therapist. I think she needs someone to talk to who understands her condition, and can help both her and her primary caregiver (my dad) identify some other strategies that help her. I think you should just make the appointment if that’s an option. Set a time frame, say 3 months, where she’s going to go. If this was physical therapy, or some other non brain related kind of doctors appointment, you would make her go, it wouldn’t be optional. And her brain is where some of her problems are.
I will say that most of our family and my mom’s friends think we are all horrible people who treat her badly and yell at her and don’t appreciate her blah blah blah. This is because we are all horrible people who push her to do stuff she doesn’t want to do and wont let her just become a lump, and she complains about it to everyone else. But her quality of life is SO much better because when she loses her motivation to get out of bed and make the bed and go live her life, we provide some of that motivation for her. She wants to be a normal independent adult, and my Dad tries to make that possible as much of the time as possible.
One thing that was really helpful for PR and my Dad was having some of our family members take Mom on a vacation. A few of them approached me later and said that they didn’t really realize how much she had trouble doing herself and sort of apologized for thinking we were all terrible monsters. It may be that you’re doing such a good job your family doesn’t realize how big the burden is. You should absolutely consider letting them shoulder it for a length of time.
It is so unfair that you ended up with so much responsibility for your Mom at such a young age. You deserve a life. It’s time to put your family to work, and make your Mom rely on herself as much as possible. It’s for both of you.
I’m going to agree with the Awkwardeers here and recommend you step out of this role ASAP, because another 10-20 years is just unthinkable for one person to take on. Your siblings will not step in as long as you have it covered, and that’s only going to be harder as the years go by. I’m going to again recommend a geriatric psychiatrist to help with your Mom’s moods, memory problems, as well as planning for the future.
I would start looking for job opportunities wherever they are that appeal to you the most. Be selfish and uncompromising and make no apologies.
Let your family know what is up and enlist the help of a great geriatric psychiatrist or geriatric social worker who will cal together a meeting of the children and outline the steps you need to take. Make it clear to them in advance you are transitioning into a much more distant and limited role- and make that transition. You probably will have to put some distance between yourself and the situation in order not to get sucked in again. You may not agree with all their decisions, but it’s never going to be perfect. But the situation you are in is awful for you, and perfect for everyone else. Time to switch it up and take your life back. They might not like it, but they will have to respect it. Right now they are unable to even understand your contributions because they are in denial. It sounds mean, but dumping it in their laps is the only way they are ever going to understand or appreciate your sacrifice, and its the only way for you to get the life you want. Good luck!
Whoa, wait. They live that close and they’re not helping at all?
I’m going to second alphakitty and say SAVE YOURSELF. Maybe it’s not your mom’s fault this situation is so lame, but it’s definitely largely your family’s fault, and it’s definitely not your fault. Move away. Force them to grow up. Even if they claim that things will fall apart without you and make you feel terrible, you deserve to have your own life and they will all be FINE.
Best of luck. I’m so sorry that you’re in a tough situation. 😦
Once my therapist worked out this great analogy for me, which I think you would also really benefit from thinking about:
There’s a bit in Monty Python (though I don’t know which one) where the condemned are carrying the crosses they’re going to be crucified on through a crowd of people. The people are all throwing stones, and rotten fruit and shouting abuse and the men who are going to be crucified are trying to just drag their crosses up the hill. One of the crowd sees how much they’re struggling and, because he’s a nice person, he steps forwards and offers some help to one of the men.
“Thanks mate!” The man says, and legs it off through the crowd. Now, because this helpful guy now has a cross, everyone assumes it’s his, and so he’s being pushed up the hill.
“It’s not my cross!” He’s shouting, “Seriously, it’s not mine! I was just trying to help that other guy!”
“Yeah, yeah,” say the guards. “We’ve heard it all before.”
Eventually they reach the top of the hill and they start crucifying people. They reach the helpful man, still shouting that it isn’t his cross, and, shaking their heads at the lies some people tell to get themselves out of trouble, they string him up too.
“But it’s not my cross!”
“Look,” says the guard, before he walks away, “You were the one carrying it, weren’t you?”
My point here is there are times when we all try to be helpful, and kind, and rather than sharing someone else’s burden we end up carrying it completely. This isn’t your cross to bear. Perhaps it’s time to put it down and walk away.
One more thing:
My one very good friend just moved to another state and neither of us is good about talking online.
It might turn out to be easier – or at least faster – to change your online-talking habits than to go out and put together a totally new social circle. The latter should still absolutely happen, but it could take a while; getting in touch with an existing good friend could be easier.
I’ve found a couple of ways to get long-distance friends back into my life when I’ve lost track of them a bit:
1) When you find yourself realizing you’ve forgotten about them and you wish they were in your life – write them a quick email. “Hey friend! How are you doing? It’s been a while since we talked – what’s new?” Maybe send along a cute cat gif or interesting article so you have an “excuse” to email them if it’s easier that way for you – “I saw this and thought of you! Also how are you doing?”
2) If chatting or Skyping isn’t just happening on its own, set appointments! You can bring this up in that same email – “I’d love to catch up with you by {AIM / Skype / whatever} if you’ve got a bit of time – why don’t we decide on a time? Are you free at [time]? If not, can you let me know when you’re free in the next week or so?”
3) Then if you manage to make a chat/Skype date, see if at the end of it you can set a new one right away, maybe in a week’s time. Sometimes it works to have weekly Skype dates, esp. if your friend has a predictable schedule week to week! That can be a nice way to keep in touch enough to be up to date on each other’s lives and not have to spend the whole conversation catching up on basics.
Good luck!!
If your mother has Alzheimer’s or some form of dementia, call your local Alzheimer’s Association chapter. You can schedule an appointment with a care consultant for free (either face-to-face or on the phone) to talk about what you’re going through and what your options are. You’d be surprised at the resources/knowledge out there that can make your life easier.