All caregivers deserve support

All caregivers deserve support

I’ve been watching our Facebook page get taken over by a bunch of school yard bullies over the past few months. It’s a pretty confusing thing to see for a support group.

Living in Florida, I’ve gotten an up close and personal view of Trump lighting people up. It’s great to see everyone so excited about the future of the US.

It’s less exciting to see my otherwise lovely neighbors start talking about Liberals like they’re less than human.

Given that Liberals and Conservatives share the same DNA, I imagine they’re doing the same thing over in their own Facebook bubble, although I don’t see much of that.

One of the great things about doctors offices is they don’t ask about your political affiliation before they treat you. They just treat you, because any good doctor doesn’t care what bumper sticker you have on your car.

Caregivers aren’t bond by the Hippocratic Oath, but joining The Caregiver Space suggests you’re here to talk to other caregivers and support each other.

That’s suddenly hard for people, because everything caregiving related has become a button unleashing a political firestorm.

I know these are all words that are just asking for trouble: Obamacare, repeal and replace, Meals on Wheels, Medicare, subsidies, tax credits, health insurance, provider network, work requirements…the list goes on. These words turn people into internet trolls and bullies.

The problem is, how do we talk about our lives as caregivers without mentioning them? I don’t think we can.

But there’s a solution.

We’re all old enough to remember a time when complaining about copays was just that — complaining about copays. Not a commentary on the President of the United States or a declaration of our political feelings. It was a commentary on our personal experience. I would complain about copays and someone else would say agree that they really add up and it stresses them out, too.

We can still do that.

If someone says they’re worried about changes to their health insurance, I can respond to another caregiver saying they’re worried.

If someone is stressed out about how they’re going to pay their kid’s medical bills, I hear that they’re stressed out.

If someone is upset because they tried to sign up for a social program and they got placed on a waiting list, I can relate to feeling frustrated.

If someone writes a post about how they wish the rules for FDA approval would change and I completely disagree, I can say that I disagree without going on a personal attack.

Some people have a great experience with the VA, some people don’t. That doesn’t mean anyone is wrong, it means they had different experiences.

We all know this already. We’re polite to people we disagree with all the time. I disagree with my husband about things. My parents and I seem to have opposite opinions about pretty much everything. And we still love each other. I still support them through all sorts of things and they support me.

We all have enough stress in our lives. We come here to share our ups and our downs and know other people understand what we’re going through. I come to The Caregiver Space for support, but lately it’s been stressing me out.

Let’s leave the political arguments for another Facebook page and get back to supporting each other.

Selling the family home in a down market

Selling the family home in a down market

Here’s a tough situation quite a few caregivers find themselves in: being responsible for selling a home that’s not in great shape. What do you do when no one seems interested in buying and you can’t afford to keep it?

Q

My sister and I inherited the house we grew up in after my mother’s passing. We are struggling to sell it.

The house needs some repairs and is in need of a renovation, but we can’t afford to do this. There’s a $9k mortgage.

It’s been listed at $50k, but hardly anyone is even looking at it. What can we do to sell the house?

If we can’t sell it, what can we do so it doesn’t damage our credit? I was told that if the house goes into foreclosure it will ruin our credit.

A

If the title is in the name of the estate, then it doesn’t affect your credit at all. If you put your names on the title, then it will. Sell it ‘as is’ for anything over the mortgage and realtor fees. I’m sorry you’re dealing with this. The loss of your parents and your childhood home must be difficult. The right family will come along, fix it up, and again make it a loved home with happy memories. Peace of mind is priceless. – Kathy C.

I was in a similar situation about 10 years back after the death of my brother. There was a higher mortgage than yours and it needed lots of repairs. I let it revert to the bank (just quit paying the mortgage) and they sold it at a sheriff’s auction. Funny thing is, the new owner got in touch with me and had me over to see the improvements he made. He’s a real nice guy and it’s comforting to know my brother’s home went to him. – Martha P.

Lower the price and it will sell. – Catherine D.

You may not want to make big financial decisions when you’re in grief. Give it a little time. – Kris M.

I’m sorry for your loss. I’m sure you have a lot of emotions going. Try to think of the house sale like a business. Sell it quickly and take what you get. Don’t worry about what you could get, since you can’t afford to make it ‘marketable.’ – David F.

What about donating it? Perhaps someplace like Habitat for Humanity will take over the mortgage and fix it up so someone can live there. – Mari D.

Is it your mortgage? Unless the mortgage is in your name what happens will have nothing to do with your credit. – Jack R.

If you’re in probate, be aware that you may need the probate judge to approve the price and buyer. This needs to be part of the listing. This adds time to closing and frequently results in a lower sales price. Probate judges are used to houses selling for somewhat less than they’re worth. – Jana D.

Not every upgrade or repair you make has to be expensive. – Cori C.

Are you listing with a realtor? Ask her to market it to investors who may be willing to do the work. If you’re not getting bites, you’re priced too high for the work that needs to be done. You have room to drop it. – Jennifer M.

If you just want to get rid of it, see what an auctioneer thinks it will bring. – Erica J.

Look into local real estate investor Facebook groups. Join and post the ad there. Check out FSBO (for sale by owner) groups. – Patrick N.

Podcasts to help you get to sleep

Podcasts to help you get to sleep

Getting to sleep when you’re dealing with the stress and anxiety of caregiving — and anticipating your next interruption — is no easy feat.

Luckily, there are podcasts to help you slip back into slumber. Here are a few I’ve tried and found helpful.

Sleep With Me: A sleep inducing podcast

This collection of meandering monotone monologues is just like that history teacher who you couldn’t stay awake for. It’s a sure bet.

Game of Drones: The Game of Thrones sleep aid

Another project by the same folks as Sleep With Me, but for Game of Thrones fans. You might not believe GoT could be so boring, but he’ll prove you wrong and help you get a good night’s rest.

Deep Energy: Music for sleep, meditation & relaxation

If you want something without words, this is the answer.

The Daily Meditation Podcasts

These meditations aren’t specifically designed to help you fall asleep, but they do the trick for me. They’ve also been helpful in making my every day life a little smoother.

The Great Detectives of Old Time Radio

I sometimes find that these old time radio detective stories keep me awake with suspense, so tread with caution.

Orvis Fly Fishing Guide

My grandfather’s instructions had a knack for putting me to sleep, so this one works wonders for me.

On Being

This interview podcast may not quite put you to sleep, but it’s relaxing and informative.

Getting seniors online for fun and learning

Getting seniors online for fun and learning

When disabilities or memory impairment make going out more difficult, seniors can feel like they’re not able to do the things they love anymore. Going online can help them stay social, learn new things, and have fun without the hassle of going out.

That is, of course, if they can navigate the internet!

Here are some tools to help seniors get online, stay safe, and have a good time — giving us time to get some things done or maybe even have a few moments of peace and quiet!


Skills to get started

If your senior is able to attend classes in person, check with SeniorNet or your local library to see if they offer services to help people get online. If not, there are online classes and videos you can help them access.

Skillful Senior

This great website helps seniors learn the computer skills that feel like second nature to us — like using a mouse — that can be difficult to get a hang of.

skillful senior mouse skills

Webwise

The BBC created Webwise as a beginner’s guide to the internet. It starts with computer basics, walks you through email, introduces users to the internet, and helps guide seniors through the basics of social media. It even explains how to stay safe online. This is a great resource.

bbc web wise teaches computer skills, how to use the web, and social media basics

Senior Planet

Senior Planet’s tech tips section is an always-up-to-date source for information on the latest tech trends, apps, and tools.

senior planet's tech tips for making the most of getting online

A friendlier experience

Microsoft Accessibility

If you’re helping set up a computer for someone with visual or hearing impairments or trouble typing, this site will walk you through adjustments you can make so they can have an easier time navigating the web.

Good50

Clear out the clutter of typical search engines and direct your senior to Good50 instead. They’ll get the same results with an easier navigation experience.

Eldy & Maavis

Clear away the clutter of a typical PC interface and replace it with something designed to be intuitive for seniors.

The bath time struggle

The bath time struggle

It’s a pretty common problem: the person you’re caring for is refusing to bathe.

Here’s advice from other caregivers on how to keep everyone clean, safe, and happy.


What’s normal to them

We have to remember that more than likely “back in the day” your father did not bathe except for perhaps once a week for church/synagogue time. Encouraging cleanliness is not easy, but perhaps sponge baths are the best hope for now. – Marie N.

The feel of the water

[People] with sensory processing disorder struggle greatly with baths and showers because they don’t like the feel of the water. It’s not uncommon for anyone of any age to struggle with SPD, especially the elderly. – LaKea H.

Making them comfortable

Identify something special to them — might be a food treat, an outing, a special visitor.

For my mom it was having a fire in the fireplace even when it was warm outside. She loved to sit in front of it and so it was great to start the fire and then she knew when she got out that she could sit and warm in front of it, I bought those 4 hour logs.

Warmth is very important — remember how you would warm the room for a baby’s bath. We have to remember that it is a bath they likely remember not a shower.

  • For women lavender soap is soothing. Or their favorite perfume from years past.
  • Perhaps get some Old Spice for older men and put some out in a bowl to the smell is in the warm room. Many older men used to use Old Spice.
  • Never spray the water on their head or face.
  • Let them do as much as they can.
  • I agree with letting them start with washing their hands or face with a cloth.
  • Having a secure and easy to use bench to sit on makes it less scary.
  • Wear something you can get wet. Have plenty of towels and mat because water will be everywhere.

Make this difficult time a sweetly speaking quiet time. We caregivers have to acknowledge bathing is often difficult but not a battle of wits or strength. A shower can be weekly and bed or sponge baths in between. Just making sure the personal areas are really cleaned to avoid rashes and breakouts and skin breakdown. Finally, the person might do it easier for someone else. If so let the other person do it. Even if you have to pay $20 a week to an aide it will be worth it. Some aides will come in just to do a bath. – Jeananne E.

It is a difficult situation, but once or twice of having the bathroom nice and toasty warm with the bathwater and all grooming necessities in place, it was easy to take my Dad by the hand andassist him. He did always feel much better afterwards and it soon grew (in that stage) to be my responsibility of getting him in there.

Sincere encouragement and patience are key in hopefully gaining the needed level of cooperation. Depending on what meds your patient or loved ones are under the influence of can be a determining factor as well. Valerian Root (a natural supplement) helped to relax my Dad. Don’t use it unless consulted with Dr. if other meds are administered. Best of luck and love to all under these circumstances. I know it is not easy. – Vicky H.

Ease your way in

Don’t say bath. To the elderly it’s allot of work.

Just let’s wash your hands and go from there. That’s what I did with my Mother while she was walking around.  She’s in a hospital bed now and we use the same words. We never say bath. She says I just took one.

So we now say we’re going to wash your hands. And then go into full bath mode. After its over we say doesn’t that feel great. She agrees and takes a nap. – Diane L.B.

Use bed bath products & wipes

In my case I used bed bath products. Most can be found at local pharmacy stores. Wipes, no rinse cleaners, shampoo, buzzed off hair all make things easier. Baby wipes for sensitive skin are good.

It’s a struggle

Oh how I feel Your pain! My Dad was the hardest. He would just cry cause he didn’t think it was right for me to give him a bath. We struggled but got it done. My Mom on the other hand is well something else, but we manage. They even admit they feel better after.

Adult disposable wipes are good, too, when the struggle is real. – Pat S.

It is literally IMPOSSIBLE to get my MIL to bathe! She will cuss you, hit you, try to bite you, and cry, like you are trying to kill her or something. Nightmare! – Vickie B.

Some days I lay on my bed and cry after doing it because I know it’s a physical demand from her and it’s also one for me! – Kellye H.

My Mom wouldn’t bathe. For 9 months she refused! I have hospice come in now and they give her a sponge bath 1-2 times a week! She’s mean — curses, hits, and throws her cane or even her walker at me! I try to help her…but all I get is cursed at or hit. I just walk away! It’s hard. – KJ

Does the US take good care of the elderly?

Does the US take good care of the elderly?

It’s a really exciting time to be in the US. The fact that the current healthcare system is being dismantled means that we have the opportunity to fix the most vexing problems.

I didn’t grow up in a military family, but I married into one. That means I’m dealing with paying with healthcare for my parents and aunt, who are on Medicaid and insurance through their work, as well as for my husband with Tricare, the military health insurance.

While I won’t pretend Tricare is perfect, it’s exponentially better than its civilian counterpart, Medicaid, or even private health insurance. I would love to see Tricare extended for all Americans, not just those who’ve served our country directly.

If we couldn’t do that, imagine if Tricare covered all government employees, like teachers and police officers.

The things we insure say a lot about what we value.

Right now, the government has stepped in to say what should be covered by health insurance. They’re about to make that decision again.

When home care is left out of health insurance, that says a lot about what America values.

I can’t think of anyone who’s willing to abandon their family members. Sure, they’re out there, but I’ve never come across anyone.

Usually people aren’t helping because they know another family member will do it. Or they can’t afford to provide the care someone needs, so they do their best to keep their job and still help out.

I don’t know how to fix US healthcare, but I do know this is our chance to ask that the help family caregivers need be written into law.

I’ve been calling my reps and asking for them to cover home health care, provide annual respite for family caregivers, and improve nursing home care. What sort of support do you want for caregivers?

Call your representative today!


Featured image: City of Angels / Shutterstock, Inc. San Francisco, California, USA – December 24, 2015: Old man in a wheelchair is assisted to get off a van using a lift.

The danger of dehydration: what caregivers should know

The danger of dehydration: what caregivers should know

It’s astounding how many adults are chronically dehydrated.

Drinking enough water helps your body work better and helps you feel better. It helps your metabolism work better and improves your concentration.

Staying hydrated becomes more important as we age. Dehydration is one of the top 10 reasons for hospitalizations among the elderly!

If you’re taking care of a senior, be sure to encourage them to get enough fluids every day.

Boost your water consumption

It’s easy to have a glass of water on your desk at work or your table at home, ready to go whenever you’re feeling thirsty. You can also make it a habit to drink a glass of before each meal.

If you’re not a fan of the taste of regular water, you can drink decaffeinated teas or fruit infusions.

Some foods are packed with water: like juicy fruits and warm soups.

Infographics used with permission from Waterlogic.

Dementia training for caregivers: is it important?

Dementia training for caregivers: is it important?

The caregiving community is incredibly diverse, but it seems we can agree that dementia caregivers — both family and professional caregivers — should be trained. Dementia caregiving is a world where the ‘normal’ rules don’t apply and we all need guidance learning to support, motivate, and keep people with dementia safe.

Family caregivers and professional caregivers both report that they wish they’d gotten training in dementia sooner and that it makes their lives easier — while helping them take better care of dementia patients.

Even at the assisted living facility where I’m a nurse, where I’d say the majority of my residents have dementia in some form, our aides have no idea how to handle it.

One resident consistently tries to “go home,” often packing up all her things, trying to get out the doors etc. The best way to calm her, I’ve found, is to tell her something to the effect of “the moving truck broke down and they won’t be able to fix it until tomorrow.” She accepts that and goes about her day.

So many times I’ve had to coach my aides because they try to prove to her that she lives at the facility, showing her name on her door and things. This only leads to her becoming agitated, then I have to medicate her because nothing will calm her down.

I like to explain it like this to my aides: imagine you’re finishing up your shift and someone tells you that you can’t leave, you live there and it’s time for you to get into bed. You know 100% that you don’t live there. When no one lets you leave you get mad, and scared, and you just want to get out of there–these people are keeping you in captivity. You’ve got to get home to your kids, go grocery shopping, and no one will let you go home. You haven’t worked here that long and now they’re telling you that you can never leave.

Because dementia patients can’t be “taught” out of their delusions. It just doesn’t work that way. So yeah, dementia training should be 100% mandatory. – Devon C.

Here’s what our community members have to say

The focus for many places, caregiving organizations, and doctors seems to be on what the dementia patients have lost ability to do. There is still so much they can do, respond to, which if we help facilitate will make the patients daily life meaningful. – Colleen H.

One of my mother’s caregivers from the agency was up all night arguing with my mother about whether there was a baby in the house. My mother asked “Where is the baby?” The ones that had training in dementia knew to answer with, “the baby is at your daughter’s house tonight so that you can rest.” – Barbara K.

I don’t think it’s a bad idea at all. My husband has Alzheimer’s/dementia and sometimes it is so hard for me to handle the cognitive /not cognitive moments with him. I try to just “go along” with those moments, but, it is very difficult. If there is a better way to handle it with proper training, sign me up! – Kathleen S.

I agree training would be great. Everyone doesn’t have the patience to deal with dementia/Alzheimers patients no matter how trained they are. They first need a heart to care and understand that this isn’t an easy job. – Quince J.

I’m caring for a grandparent and I was totally unprepared for the multiple bad episodes. Even her gerontologist isn’t much help. – Fern L.

There are times that you will wish you had training when they have a really bad episode. That training can make a big difference to their care and your approach. – Nicole K.

I’ve done all my own training on my own time with my own money because I adore these people and they deserve to be understood and their families deserve to know their being well taken care of. – Michelle W.

I used an agency to get a caregiver for my mom with Dementia, it was amazing how little they knew and were just trained on the cleaning part. I was training them and paying them hundreds of dollars…very sad. How do you help your client if you don’t understand their needs? I feel very bad for elderly that don’t have family around all the time to oversee the care they are receiving. – Terry F.

Caregivers who are inexperienced in this field leads to abuse because of the lack of understanding. And by abuse I mean unknowingly acting out towards the person with out intentionally meaning so. When a caregiver doesn’t understand and that caregiver starts to get caregiver breakdown, unintentional harm happens with out even realizing themselves they are doing it. I’ve personally have seen this happen way to many times. It’s a bad situation to both parties involved. – Kim S.

I hired caregivers to help with my Dad, and I was amazed at what they didn’t know about Dementia patients. I had to train them how to react, care for and converse with my Dad. – Patti K.

I take care of my Mum who has Alzheimer’s. I’m very glad I got trained in this area. It has been a stress saver. When I look at my Mum, I see the great honour I have been given to take care of her. – Melody F.

After what my nans going through on a so called dementia unit in a hospital, I think people need training. We have to go to the dementia unit and feed her everyday because they don’t have the patience. They have no idea at all. – Charlotte S.

Some comments have been edited for clarity and/or grammar.

Moment of Frustration

Moment of Frustration

Feeling frustrated?

Believe it or not, today is Moment of Frustration Scream Day. The idea is to go outside at noon and yell it out of your system.

I didn’t make it up, but Tom and Ruth Roy did. They’ve apparently been making up holidays left and right and some of them even stick.

Letting it out in a primal scream is a great way to get rid of your frustration and anger.

If caregivers won’t support each other, who’ll support us?

If caregivers won’t support each other, who’ll support us?

It can be hard to have empathy for other people when you feel so drained, but it really breaks my heart to see caregivers tearing each other down.

On an article about raising funds for medical care: “I also agree having to beg for money is pathetic.”

On finding the bright side to a traumatic loss: “There is no bright side when you are in end of life caregiving.”

On an article by a caregiver with support from family and friends: “you are not a caregiver. I can tell by this bull()$article. It takes more than a fancy degree to know about being a caregiver. Your article is not only offensive. It is downright demoralizing, demeaning, disheartening and unrealistic. You have no idea do you?”

Why would you come to a support group to be mean to other people? I’m sorry if someone else’s personal experience doesn’t apply to your life. Just close the tab, click to the next article, move on. Why are people with such limited free time using that time to try to hurt someone else?

If you want to read the science behind why people are mean, Psychology Today has some possible explanations. Regardless, it doesn’t help caregivers come together as a community. It doesn’t help us help each other. It doesn’t help us get the support we need from the medical community, our friends and family, nonprofits, or the government. All it does it hurt people.

David summed it up:

No two people are going to have identical experience or challenges. I know people in my home area who are struggling with bigger issues than I face. I also know people who assure me their load is lighter than mine.

Caregivers have dramatically different experiences, but we still have a lot in common, which is why we get lumped together. So, how can we support each other?

We’re here to feel less alone. Let people know you can relate to what they’re saying without shouting over them.

If someone asks for advice, read their whole story. Offer advice for them, not you. Share your experience while respecting that we each live different lives.

We’re dealing with different things and coming from different places, but we have a lot in common. Respect that.

Not everyone is a full time caregiver. This is not a contest to see whose life is hardest, who’s the last appreciated, who’s the most bitter. If it is, I’ll gladly let you win.

It is not more noble to be a martyr. Perhaps quitting your job was the right choice for you. Perhaps residential care was the right choice for someone else. Perhaps someone can afford full time aids. Perhaps tough love was in order. Perhaps unconditional support was the best choice. Each situation is unique. We’re here to support and share, not to judge.

Sometimes you need to let it out. Do it in the forums or in the Facebook groups. Don’t attack another community member. And then move on. Negativity will poison this community. The point of venting is to let it out, not marinate in it.

Tiny Buddha has tips on how to be kind to people when you don’t feel like it and HuffPost suggests how being kind to others is good for you.

The world is a tough place. When you’re taking care of someone that’s sick or disabled there’s hardly any support. We’re all hurting. We’re all in impossible situations. We’re all tired. But we’re here because we know that finding people on here will make our lives easier. Let’s get started.

Dating as a caregiver

Dating as a caregiver

When you’re taking care of someone it can seem impossible to find time to eat, sleep, and bathe — nevermind look for love. It isn’t easy, but there are other caregivers out there who are going on dates and embarking on new relationships. Remember, everyone has their own situation. What works for one caregiver might not work for you.

Are you going on dates? Share your tips in the comments!

It’s good for you

Having a social life — and a dating life — aren’t just for fun. They’re important for your mental health. Caregiving is incredibly emotionally demanding and you need to maintain a balanced life in order to keep giving to someone else. Even an hour or two a week of social time makes you a better caregiver, because it recharges you. Plus, everyone loves bad date stories.

It’s good for the person you care for

It’s not healthy for one person — you — to be their only friend or source of support. It’s good for them to be around other people and get to socialize. Social isolation is terrible for you and the person you care for — don’t lock yourself up in solitary confinement.

It’s okay to ask for help

Needing to rely on others isn’t a sign of weakness — no caregiver should be on their own. Of course, the logistics of finding someone to provide care in your absence can be formidable. Some of us have an easier time than others — finding someone to keep an eye on my adorable autistic niece is a piece of cake, while I have to beg and cajole to get someone to keep my ornery uncle company, and neither of them requires complex medical care.

Find friends — and dates — online

Don’t know anyone you’re interested in dating? No problem. Sign up for an online dating profile, many of which are free. If you’re not comfortable joining a dating site, Meetup.com can help you meet other people to socialize and speed up the process of meeting someone the old fashioned way. Your local library will probably have a calendar of events, too.

It’s okay to cut corners

We all have only 24 hours a day — you decide how you spend it. Are all of your non-negotiable tasks really non-negotiable? Are there shortcuts you can take or corners you can cut with chores? Are you keeping busy to distract yourself from sadness? Take a look at the calendar and make a realistic decision about how often you can go out and then follow through. Don’t decide there’s no time for you in your life.

Get creative with finding help

Beyond asking for help from family and friends, there might be caregiving volunteers available through a neighborhood organization. Elder Helpers has volunteers around the country; Wake County, NC has the Center for Volunteer Caregiving; Caregiver Companion serves parts of Indiana. Please share information on other organizations in the comments below.

You can also trade time with another local caregiver. It’s also worth it to find a professional caregiver who you’re comfortable with. Even if you don’t use paid care often, having a professional caregiver who knows your loved one is priceless when there’s an emergency.

Fun can be affordable

Going on a date doesn’t have to mean dropping a bunch of cash. Many museums have free entry at specific times or free programs. Most art galleries don’t charge admission — and even have opening parties that the public can attend. If it’s nice out there are often free outdoor movies, dancing lessons, and concerts — or you can enjoy a stroll or a picnic. Ask around to find out which cafes have good specials and affordable prices.

You’ll keep the good ones

Some people will dismiss you as soon as they realize you’re a caregiver, but that might be a good thing.It’s better to realize someone’s not ready to deal with real life early on. People who stick around are going to be the type of people who will stick it out for the long-haul.

You’ll skip the bad ones

All too many of us have been guilty of going on second or third dates with people we aren’t interested in because why not? Well, when you’re paying $20/hr or have begged a friend to come over for a few hours there’s a compelling reason to not waste time with someone you’re just not that into.

Be understanding

You’ll find someone who understands that caregiving is your priority. Even if caregiving is your top priority, if you want to pursue a serious relationship with someone, they need to be one of your priorities, too. Things come up — a lot! — and that’s fine, but you need to be extra sure to let them know what’s going on. Being a no-show or vanishing for weeks on end isn’t an acceptable way to treat someone, regardless of your caregiving responsibilities.

 

Remember, no one thinks dating is particularly easy or fun all of the time. It’s okay to take a break from dating — or decide you’re not interested in a romantic relationship at all. But if you’re looking for love, it’s important to make that a priority in your life — and seek out the help and support you need to make it happen.

The thing they never named

The thing they never named

When did the problems begin? By high school she ran away from home. She told me about it. Listening to Bach, windows rolled down, hair streaming in the breeze, done with her old life, driving without stopping, destination Florida. That’s what I now know to be a manic episode.

The problems started long before I came in the picture. Even then, crazy people are lots of fun when you’re too young to understand. You see the fun, not the costs. Sometimes she was scary, but she never did anything to me. She loved me. Even when she hated her own children. She’d pull me aside, too close, telling me her and I were a team. We’re the black sheep; we’ve got to stick together.

No one ever said she had bipolar disorder. They just had the look. Exchanged glances. Grimaces. Excuses for why visits had to be cut short. She came in and out of my life, I was mostly only allowed to see her when she was doing well. But that rule was loose, since they couldn’t just leave her kids alone. Everyone came together to take care of her, push her to get help, even if no one would put a name to it.

And the good stretches could be long. Long enough to feel like maybe I’d imagined the rest. Sometimes it felt like I was her third child.

Then it got bad again. For a long time. Now we were old enough for her kids to move out. That was enough of an excuse for the rest of the family to not bother. She caused a lot of trouble. They’d rather just wait it out. I did, too. I tried at first, like some of us did. But she was too much. Too mean for my adolescent ego to handle. I couldn’t do it. We all backed off.

Finally, over drinks, someone admitted what I suspected. She’d long ago been diagnosed as bipolar. Had been hospitalized. On and off of medications. But there’s not a lot of services available. Waiting lists that are longer than how long she was agreeable. Medications came with side effects and weren’t already covered by insurance she didn’t always have.

Most of us cut her off, but we didn’t mean forever. We were in a holding pattern, circling around her, waiting for a sign it was safe. That’s how we found her, but also how it took so long.

Later, we pieced together that several of us had called and gotten no response. Two people stopped by to say hello, but the door didn’t open. Finally, by the time her daughter stopped by, the mail was pulling up.

The police wouldn’t let her kids inside. They called my dad, who cleaned things up. I was a little alarmed that he took a crime scene mattress to the dump and nobody asked any questions. I guess that’s how small towns are.

The house was sold. The bed stayed in my parents basement for years. Maybe it’s still there.

At the funeral no one said suicide. Or bipolar. Or anything about lack of health care access or shame. I heard an aunt say it’d be better for the kids. It’d be tough at first, but she was a bad mother. Of course, by then there were no ‘kids’, really. We were all as adults and we’d ever be.

The kids disagree. We grew apart. I wonder if it was because I did not play along when they sainted her.

Her name doesn’t come up in conversation very often these days. I don’t think they’re trying to pretend she never existed, but it brings up a lot of complicated emotions and uncomfortable family dynamics.

 

I spent a lot of time wondering what part of her was her and what part was the illness. At what point did I start to share the blame for never trying to get her help. There are no answers that I settled on. I guess I made peace with knowing there could be no peace. The answers are irrelevant.

Caregiving and recovery

Caregiving and recovery

Feel familiar?

via Giphy

Sometimes I suspect my husband can do more than he says.

When I ask him to help a little bit with the chores, or even just cleaning up after himself, he can’t find the energy. But when his friends invite him out, he manages to rally for a few hours of fun.

I’m grateful that he has such loyal, wonderful friends. I’m glad he can still get out and have fun while he recovers – and it does seem promising that he’ll be back to work in a few months. I understand that when you have limited energy you have to carefully choose what to spend it on and certainly helping with the chores is not an enticing task.

I understand those things, yet it leaves me feeling like he has forgotten me. I am not recovering from an injury, I have much more energy than he does right now. But we all have limited energy and limited time. I have things besides chores that I would prefer to do. There are lots of things I would have rather done than the unpleasant parts of caring for him and running the house and earning money to pay the bills for the past few months. Yet they all fall on me.

When he was unable to contribute, that was fine. I love him and we each do the best we can. Right now it feels like he’s not doing the best he can. He resisted my taking care of everything at first. Now he’s grown a little too comfortable with me taking care of everything for him.

He’ll never be back to normal, I know. Soon he’ll be as recovered as he’ll ever be and he’ll have the ability to take care of himself. Even now, he’s back to doing the things he was never comfortable with me doing. The things he was never so enthusiastic about doing still fall on me.

These months of caregiving have undone the women’s revolution. I’ve been asking for him to do more and more as he’s recovering. I’ve been checking with his treatment team to see what he can do and what he’s not quite ready for yet. I’ve been starting out gentle and slowly letting him know that returning to doing his share is not optional. He’s refusing to take the hints, so I’m having to get more blunt with my requests. He’s full of excuses for why he can’t help with our shared responsibilities.

Marriage is a partnership. I don’t think both shares have to be even. We all have our strengths and our preferences. Sometimes one person can’t contribute the way they used to and some people give back in different ways. But we need to find a new balance that works for both of us.

Advice from Captain Awkward

Advice from Captain Awkward

A question posed to Captain Awkward the other day sounded very familiar:

Dear Captain Awkward,

One year ago my father passed away. It was a several year battle against cancer that he eventually lost, and I still miss him deeply.

My mother has struggled in the aftermath. She has been overwhelmed with loneliness and sank into a depression. She loved my father deeply and he was her rock, both emotionally and in a more practical sense (bills, caretaking, house upkeep).

Lately she has struggled more deeply because a chronic pain issue flared up. She has been to numerous doctor appointments, tried multiple medications and treatments, with no improvements. The medications make her groggy and confused, and she has been having trouble sleeping on top of everything. It seems like her life is a waking nightmare.

I love my mom very much, but I am struggling with how to help her. I am an only child, and we have few extended family members – none she feels she can rely on. She has friendships, but does not trust her friends easily/well and has withdrawn lately because she is too exhausted to reach out. She usually rejects the idea of outside/paid help and feels very vulnerable.

My relationship with her has always had some tension. She is a wonderful mom and a caring person, but our personalities have always clashed. She has always needed more from me than I felt capable of giving, but that need has grown immense and my ability to help her has, if anything, decreased. My own life has been challenging – a stressful new job, a wonderful-but-complicated marriage, and grieving for my father.

I try to visit as often as I feel can, have offered help in various forms, but visits are filled with her lamenting that she doesn’t have anyone to help, and my offers of help are turned down more often than not because they aren’t the right ‘kind’ of help (she has rigid parameters and a deep need for control). Her control issues are also triggering for me, because control issues are something that I struggle with as well.

I have always found visits with my mom draining, and even more so now in this acute time. Every interaction with my mother has the ability to send me into my own tailspin, but setting boundaries makes me feel incredibly guilty in the face of her deep need – and the fact that she is a good person and mother.

How can I navigate this tricky balance? How can I help my mom without losing myself in her bottomless pit of need? How can I maintain my own mental health without feeling like the worst daughter ever?

Sincerely,
A

Sound like your life? Read the Captain’s response here.

Life on the edge

Life on the edge

I have no professional qualifications. I’m sharing what I wish someone had told me.


Your friend is cutting herself and maybe doing some other self destructive things.

1. Don’t freak out. It’s a big deal and it’s not a big deal. It’s really, really common. The odds are that, believe it or not, everything will be fine, eventually.

2. Is she bleeding right now? She probably doesn’t need stitches. I’ve taken people to the ER for all sorts of horrific looking things that made me feel faint and no one ever got stitches. Butterfly bandages and superglue do wonders.

3. You’re feeling a lot of things and that’s fine. What are you feeling? Angry? Panicked? Sad? Frustrated? Helpless? Why do you feel that way? Probably because you care about her and hate to see her suffer and know this is not something you can fix. Let her know the why part.

4. This is probably not an emergency. Some people cut once, some people cut for decades. This doesn’t need a solution tonight. Thankfully, since there’s no simple solution.

5. Cutting is a coping mechanism. It’s not the real problem. There’s no treatment for cutting. People who cut can address whatever they are trying to cope with, find alternative ways to cope, or both. Coping mechanisms that help someone regain control are a great help.

6. Give her the space to talk. Don’t confront her. Don’t arrange an intervention. Watch some movies. Go for a walk. Be around. Invite her to open up by letting her know you care and are trustworthy.

7. Let her know what resources are there. There’s not a lot in the US, but there are some. Maybe you’re students and have access to counselors. Maybe there’s a great sliding scale mental health clinic. Some people swear by CBT, DBT, and mindfulness. Maybe there’s something you can help her with to deal with the underlying problem.

8. You can’t force her to accept help or address the pain. It’s her choice. You can decide that you can’t handle listening to her problems is she chooses to stay in an unhealthy or dangerous situation. It will harm you to watch people who decide to stay in pain and not try to change that. It’s okay to protect yourself.

9. If they want to stop, help them. Distract them when they get upset. Suggest other ways to cope when things are overwhelming. Encourage them when they succeed. Comfort them when they don’t. There’s no deadline to change. Not everyone wants to stop and trying to force them to will only make it worse.

10. People who are desperate are very good at manipulation. They’re probably not trying to manipulate or take advantage of you, but they’re too absorbed in their own pain to think about the cost of their actions on anyone else. They will explode your life if you let them. Decide where your boundaries are and maintain them, even though it’s so, so hard.

11. There will be more. The more you accept people who are in too much pain to reciprocate friendship, the more you will surround yourself with people who are in pain. One day you will walk away from most of them. Not out of anger, just by deciding this is not what you want your life to look like.

Cut the crap

Cut the crap

I used to joke that each bit of dignity I lost got me that much closer to freedom. One day I’d shit my pants in public — then I’d be truly free.

Crude, sure, but it’s nice to know that each time something happens that is so embarrassing surely I’d die from the shame, well, it’s really not that bad. I have a whole litany of horrendously shameful experiences that would curl the pages of Seventeen Magazine and their silly Traumarama. And I’m only 30, so I’m looking forward to several decades of horror to come.

This is why I am so confused when someone refuses help out of shame. You’ve made it to 82 and are too prideful to use a bedpan in front of me. Really? You must have lived a boring life. I have peed in front of strangers in multiple countries. Get over yourself.

The thing is, the more I’ve made this joke (you’re wondering how I get invited to parties, I know), the more times strangers gleefully confess that they have beat me to the punch. Shitting your pants? They’ve been there, done that. On road trips. At work. On first dates. At weddings. Life goes on and it becomes a story to laugh about.

Which is how I keep myself from freaking out when something particularly cringe worthy happens. When my dad walked in on me having sex with my boyfriend in high school I kept reminding myself that one day this was going to seem hilarious. So let’s just pretend I’m narrating this to a bunch of new friends over drinks at a party. It kept me from dissolving into a puddle of shame. And today it’s not even funny enough to make the repertoire. I’ve had so many other more embarrassing things happen to me since.

I have little sympathy for people who would rather suffer privately than accept help. If that’s what they want, fine, less work for me. I’m not going to beg to clean their dressings or wipe their ass. I’m also decidedly not flattered when some charming family member wants me to dote on them constantly because God forbid a stranger help. If you treat strangers better than your own family, you’re doing something wrong. Your secrets are much safer with the kindly home health aid, who at least is required to maintain some sense of decorum. I’m not.

Scott Stossel shit his pants in front of a Kennedy and not only lived to tell the tale, he wrote a book about it and is wildly popular. They’ve had however many decades to become comfortable in their skin — Today is as good a day as any to stop being silly and grow up.

If I’m too sick to do things by myself, I may not be particularly thrilled to be taking care of my bodily functions in front of an audience, but I’ve got bigger things to worry about. Everybody poops, guys.

Pushy relatives are pushing us away

Pushy relatives are pushing us away

My mother in law thinks my husband’s disabilities would be cured of he cut out gluten. She thinks the chronic pain world go away with enough tumeric and if he put onions in his socks at night. Despite the fact that he has none of the symptoms of celiac disease and there’s no scientific evidence to support her claims, she is adamant and outspoken about her beliefs.

He’s not totally against traditional medicine and healing options, but the suggestions she’s making aren’t even related to his disabilities.

I understand that it must be terrible to, from her perspective, watch her beloved son suffer needlessly. Which is why he’s sometimes gone along with her quack diets and nonsense cures, sometimes for months at a time. Most of them don’t pose any potential harm and we thought it would help our relationship with his mom. When they fail, she insists is because he wasn’t really following her inductions. Or its because we don’t have faith. It’s his negative energy that’s causing his health problems. So he’s stopped humoring her.

Each time we see her, she has new printouts of ridiculous claims from healers. No matter how many times we’ve said that we appreciate her concern and we love her very much, but we believe in medical science. We change the topic. We tell her outright that we’re not going to discuss it. She refuses to respect that his medical care is his choice. Instead she makes a scene.

Easter was terrible. She opened the doors with printouts in her hand. She ranted on and on about alternate treatments and conspiracy theories all during dinner. We kept trying to change the topic, bring other relatives into the conversation, but she didn’t make it easy.

And then he declined a glass of wine, saying he wasn’t supposed to drink on his new medication. That’s when she really started. She insisted the medication is causing his disability – he is physically disabled from a chronic disease aggrevated by an injury – since he wasn’t disabled until he started taking medication. She was practically yelling and worked herself up into tears. Finally, he said he couldn’t speak to her until she was ready to respect his choices and we left.

 

Grandma’s ghosts

Grandma’s ghosts

My grandmother made it to 100 before ever calling 911. But one night she could hear someone trying to break into her house. From the balcony she could see a man trying to break the window lock. The police car scared him off. Surprisingly for a neighborhood with only a few feet between houses, none of the neighbors heard anything.

It happened again the next night while my dad was there with her. He was casing the house, smashed the glass, unlocked the door and came in. Only no one else could see him. My grandmother was so shaken up she needed someone by her side for the next day. The man kept coming back. There was a strange woman and child in her bed. My grandmother kept seeing people no one else could see.

We knew older folks could experience delusions and extreme confusion from UTIs, but that wasn’t the case here. And she was otherwise totally lucid. What was going on?

a woman at a window who might be a ghost - my grandmother was seeing people who weren't there in her victorian homeThis had happened once before. When she’d been given codeine in the hospital she had a number of delusions, from thinking she was on a cruise ship to thinking she was being held captive. The hospital staff realized what was going on pretty quickly – they said it was a common side effect, which Bob’s sorry attests to – and switched her medication. But she’d been out of the hospital for days before it started this time.

By time the doctors had seen her, her symptoms were already subsiding. Or, at least they seemed to be. Her daughter asked if she was still seeing the people. My grandmother said yes, she was, but she knew they weren’t real, so if no one else saw someone, she just ignored them.

I can’t imagine the mental strength that must have taken. Can you imagine something terrifying happening, but no one is doing anything about it? And then to use logic, in this moment of fear, to decide to act like nothing is happening?

After a week or so, she said she no longer saw anything she needed to ignore.

We never got a satisfying explanation for what caused it. A delayed reaction to medication? Am undiagnosed infection? Stress? Now we know to be extra vigilant when she’s switching medication. Don’t discount personality changes – they can be an important sign of a medical issue. And, regardless of the cause, it’s important to do what you can to provide comfort and reassurance when someone is experiencing delusions.