Caregivers, Are You Focusing on Problems–or Solutions?

Some days, caregiving can feel like you’re stumbling from one problem and challenge to the next.

When I was caring for my mom who had Parkinson’s and Alzheimer‘s, I felt like I couldn’t do enough, give enough, or fix the pain or loss we all faced. It was too easy to feel like a failure–but the more I gave into the frustration and apathy, the more it grew. I found that the best thing I could do was to prioritize–focus on the little things I could do–and find little solutions along the way.

What’s your biggest caregiving challenge?

Is it getting the doctors to listen to you and give your loved one the meds or treatment they need?

Is it getting along with your elder parent?

Is it dealing with the challenging behaviors of Alzheimer’s?

Is it being there–for your mom, your kids, your husband–and even having a sliver of time left for yourself?

 3 Steps to Help You Focus on Solution: 

• List exactly what the problem is and every little part.
• List several possible solutions.
• Break the solution down to small steps.
• Do one step. Pick one that’s doable, that interest you–something you think you have a chance at accomplishing.
•  Now  leap-frogging over the problem and focus on this one small part of the solution.
• Celebrate your small victory. If you were able to make your situation even the tiniest big better, you have something to feel good about.

It may not be the ideal solution, and it probably won’t solve the bigger issue, but impact is power.  You start to feel hope again. This fuels you to try another small step, and another.

For example, my mom was extremely difficult at night. They call it sundowning. It wreaked havoc on me and my family and left me exhausted and addled. Sundowning has so many different components (pacing, agitation, wrecking her room, not sleeping, paranoia, trying to escape, stubbornness–not staying in the bed) that focusing on the problem(s) were too much.

But I did find that my mother was calm in the morning. I started fixing her a hearty breakfast, bathing her, and then napping in the chair beside her as she watched Andy Griffith reruns. She and I would usually nap, and I made sure she was up by noon or 1pm so she would still have a chance of sleeping at night. It wasn’t perfect, but I could catch an hour or so of sleep, which was a godsend. That was only a small part, but it was the only thing that worked at the time. The more sleep I got, the better I felt–and finding one small solution sparred me to look for more.

It may feel good to gripe about your problems to a girlfriend or your spouse. Griping, vent is good at times, necessary–but it’s not as good as making your life–and your loved one’s life better. By focusing on the solution and breaking down into small, doable steps, you might find you can make a real difference.

Do You Feel Like “Skipping Christmas?”

Some holiday seasons are tougher than others. As caregivers, and for those who struggle with depression or have recently lost loved ones or their loved ones are in hospice, the holidays are bitter-sweet. Several caregivers I’ve talked to lately have shared they’d really rather “skip” Christmas this year. It isn’t because they’re all Scrooges. It’s because it hurts. So is it okay to skip Christmas?

Sometimes we just have to take a break. Sometimes we need to grieve, it’s part of the journey to healing. But another way to look at it is only do the things that bring you a sense of peace or happiness. That’s your barometer. While your heart may be aching and you’re exhausted beyond measure, and you may feel like you’d rather just ignore the whole thing, you may find a few ways that the holiday season will actually bring comfort to our lives. 

First, make a list of what you definitely want to skip. Does a tree sound like too much work. Nix it. Do you like candles on your mantle and that doesn’t feel too Christmas-y? Then light some candles. Do cards feel like a giant never-ending to do list? Let it go.  Is it painful to gather with family? Ask for a rain check and invite a friend to dinner–go Italian or take a cruise–something different that doesn’t remind you of the past. Many people spend Christmas alone and would love the invite.

Then find one thing you want to do–Christmas, Chanukah or holiday related–or not. If you need to get your watch fixed, put it on the list. If you want to see snow, then put it on the list. One item is enough. Part of the holiday conundrum is that it’s overwhelming–so simplify.

If you’re inundated with thoughts of your loved one, then write them a letter. Share your heart. Tell them where you’re at and that you miss them. Ask them to help you–give you strength. It’s okay to talk to your loved one even though they’ve passed away. That doesn’t make you crazy. Talk to them while you’re in the car or when you’re on a walk. Ask them for guidance. Tell them that the holidays are hard. Maybe a good talk is just what you need.

If you’ve already skipped a couple of Christmas’s, then it might be time to re-engage. Once we get out of the habit of celebrating and gathering with family, we forget how to jump back in–it’s like double-dutch–our timing feels off. Yes, it might still hurt–but it can also feel good at the same time. Gather with family and friends, lift a glass of wine and be grateful for the people in your life–those who have gone before–and those who are still here. Sometimes we have to make ourselves get back in the swing of life.

 It’s going to be uncomfortable and awkward at first, but you just might find yourself sitting in front of a fire, working on a crossword puzzle, sipping cider and looking around the room at loved ones and realize that you really are starting to feel better.

Just like in hop-scotch. Skipping means that eventually you have to land.

Winter Warmth and Safety for Our Elders: A Caregiver’s Priority

A major winter storm is heading up the East coast and could dump 20 inches of snow. Is your elder prepared? Many of our elders live alone and winter warmth and safety can be a big concern for caregivers and their loved ones.

 Have you ever noticed why some elders are so cool to the touch? As we age, our bodies don’t have the muscles it once had that helps to generate and maintain heat. Being thrifty is admirable, but sometimes it can be taken too far. Heat, fuel, supplies, proper insulation for their homes, and having a way to communicate or be rescued if things turn for the worse are all concerns that become a caregiver’s priority.

Keeping Your Elder Safe and Warm in Winter Weather: 

1. If you live nearby, go and get them. No argument. If the weather has the potential to cause power outages ad road hazards, then they’re better off with you. You don’t want to not be able to reach them, worry that their power has been out for days, or that they’ve fallen. Just go to their house, get their meds, important info, and enough clothes and supplies for a week. Even if they fuss, part of them has to be relieved that someone is watching out for them.
2. If you don’t live nearby, then have someone check on them every few hours. See if a neighbor or someone who lives close will take on this role. You need to know that they’re okay and winter circumstances can change rapidly.  This is when those community resources and contact numbers become crucial. If your loved ones winds up in a dangerous situation, let the authorities know so they can take them to a shelter.
3. If your parent is still pretty able-bodied and lives on their own, then make sure they have an alternative heating method–in case the power goes out even for a few hours. Make sure they have enough gas or wood or portable heater to get them through. Some people like to have a generator. If you’re not near a city, then this is a must.  Do go over safety issues regarding carbon monoxide poisoning.
4. Stock up on flashlights, candles, and a battery operated radio. Do this ahead of time and have it in a convenient place. While you’re on the phone with them, double-check that they have these supplies out for easy reach.
5. Before the storm hits, encourage everyone including your elders to dress in layers and have your supplies nearby. Get out those extra blankets and be prepared.
6. Have water and non-perishable foods on hand.
7. Know where needed prescriptions or other medical devices such as oxygen are so you won’t have to hunt in the dark.
8. Know the signs of hypothermia:

• Confusion or sleepiness, slowed, slurred speech, or shallow breathing, weak pulse; low blood pressure, gray or off-color, shivering or no shivering; stiff arms or legs as hypothermia increases, or slow response to simple conversation or questions.

Caring for those we love becomes even more important and takes on a heightened level of awareness during the winter months when our elders, children and pets rely on us to keep them safe–and warm.

Alzheimer’s Caregiving: Is Your Care Receiver in Pain and Can’t Tell You?

Alzheimer’s takes so many things from us–our memories, our connections, and at times, our ability to communicate what’s going on–right now. While it’s agonizing to not be able to chat and laugh with your spouse, parent or friend,  it’s an even worse feeling to think they’re in pain–and we didn’t realize it. As Alzheimer’s takes its course, the disconnect between cognitive abilities (to comprehend) and communication abilities break down and make it difficult to discern if our loved ones are in pain.  Some studies have shown that 25-50% of people with Alzheimer’s are experiencing significant levels of pain.

This divide can continue to grow and cause our care receivers not to be able to share when they have a headache, toothache, back pain, sinus infection, UTI (urinary tract infection), pneumonia, arthritis pain, or even worse–symptoms of cancer, broken bones, or elder abuse. 

Here are some “signs” that your loved one may be in pain:

• Anxiety and Agitation: UTI’s can cause feelings of heightened awareness, a nervous feeling that’s part pain and part irritation.
• Wincing or tensing when moved: Watch their facial expressions as you lift them on and off the toilet or in and out of bed. Watch their muscles–see if they’re favoring one side or another, or acting protective of one area. Watch their hands or feet–do they curl or spaz when being moved.
• Moaning, yelling, whimpering, swaying or cradling: Think how you act when you stub your toe or have a toothache. How would you communicate that if you didn’t have your words?
• Changes in appetite, sleep or avoiding certain habitual routines: Just like when we’re in pain, we can’t concentrate, we spend all our energies on our pain and other normal routines get sidelined.

These some of the basic pain indicators. They’re what humans tend to do when in pain. As a family member or friend, it’s our job to be their care advocate, to keep the continuity in their care. Even if your loved one is in a care home, or has a health aide, don’t expect them to be on top of this. You’re the one. You know their personality and can notice subtle changes. You’re the one who has been in their life the longest. You’re the one they need, the one they’re most likely trying to ask for help.

Do some basic health checks each week. Look for cloudy or odd smelling urine. Look for dark stool that has changed and might have blood in it. Put on a glove and run your finger through their mouth to check for abscesses or loose teeth. Do a light massage from head to toe, gently pull on their limbs and rotate them, feel for broken bones, cracked ribs, swollen abdomen.

Check for bruises, swollen places, and lumps on the head. Make sure their pupils are the same size. Listen for a bad cough or for rattling in the chest (might be bronchitis, pneumonia, or congestive heart failure. You might want to buy a blood pressure cuff (they’re easy to learn to use), stethoscope and have a good flashlight available. This can save you exhausting doctor visits and give you an indication as to what’s going on.

Even though your spouse, mom or dad has Alzheimer’s, they don’t stop being themselves. You’ll still see aspects of their personality, and you know them–you’ll be able to pick up on small cues. Listen to your gut. If you really have a deep gut feeling something is wrong, it probably is. Don’t rule out elder-abuse. It’s sad, but it happens. Sometimes care assistants are just rough and don’t realize how fragile an elder can be. Others are cruel. If you have doubts, install a granny cam and stop by often.

 We have to be sharp and aware of what’s going on. Even though we’re exhausted and have too much to do, this isn’t an area we can slack on. Our loved ones needs us. And if you find something now that you’ve overlooked, don’t beat yourself up. You’ve been thrown into the deep end of the caregiving pool and sometimes it’s all you can do to keep from going under.

Guilt paralyzes and you don’t have time for inaction.

 Now you know. Now you’re taking action.

Incessant Questions: Manage Challenging Alzheimer’s Behavior

“Can I go home? Will you take me home? This isn’t my home–will you call me a taxi? Where do we live?”

My mom asked me these questions all day long. She had Alzheimer’s and this is typical behavior for a person with a neurological disease. Sometimes I’d answer, feeling my frustration rise to the point to where I was gritting my teeth and on the verge of laughing–or crying–or both. As my mom’s full-time caregiver there were many days when there wasn’t anyone else around. Sometimes I’d ignore her–but that certainly didn’t curtail her incessant questions. Some days it felt as if my head were going to split in two.

No matter what I said, how I handled it, I couldn’t get through.

I knew that Alzheimer’s made her feel lost. Her thoughts were like water draining through a sieve. She couldn’t hold an answer anymore than I can hold water with open fingers. I felt for her, tried to comfort and console her, but how do you get through? How do you offer a sense of peace and closure to someone who can’t hold on to a single thought?

At first, my heart was breaking. I was angry–at the disease, at what it had done to my mother, to my life–and hers. But what good does it do to be angry at a disease? Finally, and it took some time, I found the resolve I needed.

It was okay that she couldn’t remember. I could remember for the both of us. I remembered we were mother and daughter. I remembered for the two of us that I was adopted and the love and home she and Daddy extended to me. I could remember she ate breakfast. I could remember her stories, her songs, her recipes. And with this paradigm shift came peace.

I learned that it’s best to distract and replace. These are two terms professionals in the caregiving and Alzheimer’s field use.

Distract: When your loved one starts asking a million questions, turn on some music, turn on a favorite old tv show, ask them about their mom (they tend to have their long-term memories in tact) or about their wedding day, get them to help fold clothes or get something tactile like coins they can help sort. Keep them busy and focused on something else. Sometimes this works, sometiems it doesn’t–but you learn what works for them–what tactics they respond to.  

Replace: If your care receiver is doing something you’d rather not–handling breakable, touching themselves in public, picking their nose etc., then have a few things on hand that they like–to replace the dangerous or inappropriate activity quickly. Some women respond to holding a doll. Some people like the tactile sensation of playing with two strips of Velcro or touching a lap blanket made of velvet, or knobby material that also has buttons. For others, they’ll respond to singing a favorite song–if you start singing it. Quickly replace the object or behavior not bringing attention to your actions, but distracting them while you divert their attention and then help them to focus on something else.

It takes practice, but it can make such a big difference. For my mom, I found that she responded to my playing the piano. I had moved her piano from her house to mine when she moved in, and when I sat down to play, it made her want to sit down to play. She’d sit beside me and place her hands on the keys–and even though she couldn’t remember that she had breakfast or what my name was, she could still play Amazing Grace.

I also kept a small book of photos of her mother, her sister, and my dad from years ago. She recognized them and liked flipping through the album. Over time, I found lots of ways to keep her entertained. It took some ingenuity but I liked knowing I could alleviate her agitation.

Who knew? Caregiving takes a fair amount of creativity.

Caregiver Holiday Blues Got You Down? Simple Ways to Find Your Joy

Christmas tree and tinsel, lawn lights, Carolers, egg nog and bows…all that fa-la-la-la-lah can sometimes have the opposite effect and send a caregiver into a funk. 

It’s not that you mean to be a Scrooge, but caregiving during the holidays can trigger a lot of “Ghosts of the Past–and Future,” (otherwise known as regret and worry) not to mention even more work to your already sleep deprived self. It’s hard to muster up a cup o’ cheer when you’re overwhelmed and you’ve got six dozen cookies to make for the neighborhood party in two days.

First, take a minute to figure out what’s really bugging you.

 Is it all the extra work–or is it that you’re worried that this might be your last Christmas together. Sometimes our frustration and fussiness is really covering up fear. But facing that fear and taking a minute to breathe deep can make it less scary.

Next,  figure out what you like best about the holidays.

You might like snow globes. And gingerbread men. If that’s Christmas to you, then only set out your snow globe collection. Who says you need a tree? Spend one afternoon making gingerbread dough and then freeze it. Plan another day when you and your spouse or elder-parent can decorate your gingerfbread men. Set up a card table by the fireplace and put all the sprinkles and candies in little bowls. Put on a Perry Como rendition of White Christmas and enjoy that one day.

Most caregivers have so much on them already that we have to find ways to make Christmas or Chanukah easy–so we don’t wind up resenting it. Let go of the three-feet long to-do list and only do what brings you joy. When you  share your new ways to celebrate the holidays–simple and easy–you’ll find that other people admire you for bucking the over-priced, over-worked system. You could start a trend.

None of us know how many holidays we have left. Spending them with those love, really being present, and making good memories is what it’s all about.

Caregiving a Grumpy Loved One: 4 Tips to Bring a Smile

Remember that lovable but grumpy donkey, Eeyore, in Winnie the Pooh? He always saw the rain clouds, always had something negative to say. While it’s kind of cute in cartoon form, living with a grump can be exhausting–and caregiving is hard enough–it would really help if our loved ones at least tried to be pleasant. What do you do if your dad or mom–or spouse is a grump?

I wrote in my book, Mothering Mother that my mom walked into my kitchen one day and slammed her hand down on the counter and announced, “I’m not happy!” She had a scowl on her face and a look that said, “and what are you going to do about it?’

At that moment I realized that I couldn’t make her happy. I could only make me happy.

So I just smiled and patted her hand offered her a cookie and some Sprite, and went on doing what I was doing.

We simply can’t make anyone feel what they don’t agree to feel. We can’t try to tap dance and stand on our heads to please someone else. Sometimes we just have to let them be–and focus on the one person we can do a little something about–ourselves.

Four tips to help lift your grumpy person’s mood:

• Make a joke, even a sarcastic one. It shocks them, takes them off guard–and it lets them know that you’re not going into the gotta-try-to-please-you place.
• Avoid and distract. These are two useful tools  when dealing with an Alzheimer’s patient. When the start obsessing (where am I, I want to go home, who are you, why am I here) it’s best to ignore those comments–or their grumpiness–and try to get their interest focused elsewhere. Talk about what’s coming up that day, ask a question (even if they can’t answer–do you know where your shoes are?) Distraction is a wonderful, but  temporary tool.
• Be firm. Say in a firm voice, “Stop griping. That’s enough.” If they don’t, walk out of the room. Let them see that you’re not going to participate in their grumpiness. But do know that if your loved one is in mid to late Alzheimer’s, their reasoning abilities are shot. They can’t remember from moment to moment so telling them to stop won’t work five minutes from now. This only works early on.
• Rise above the grump. Hum a tune, turn on the tv, put on your iPod and headphones. Go somewhere else in your mind. You may have to cook, clean, change sheets, bathe, run errands with your little curmudgeon by your side, but in your mind, you can be Aspen skiing, or Paris shopping, or simply making your grocery and menu list.

If your loved one ash been a bit our a sour-puss all his/her life, they’re probably not going to change, so don’t think you’re going to change them permanently. As a caregiver, we have to choose to be kind, firm, easy, funny (sarcastic humor and dark humor counts) and patient–even when they’re not.

My Siblings Won’t Help Out and I’m the Lone Caregiver

Sometimes you feel like you’re a lone caregiver–especially when your siblings won’t pitch in. With so much to do–errands, hospital stays and physical therapy,  prescription and insurance issues no wonder it feels like your head is spinning. Add on top of that day-to-day frustrations  and relationship concerns, and you may find yourself vacillating between tears and screams. How do you not harbor hurt and angry feelings toward your sibs when they refuse to help out?

There’s no one magic solution. Every family is different, but I do know that arguing about it probably won’t get you anywhere.

5 Tips to Encourage Your Siblings to Help with Caregiving:

• Give them something specific to do. Ask for one consistent thing–that they take your parent to one appointment a month, the same one so that it ‘s easy to remember. Ask clearly for their help. If they don’t help out, ask why. Remind them that their parent’s care is meant be shared. .
• Let them throw money at it. So they’re not into hands-on caregiving. Then let them contribute in other ways. Ask them to pay for a housekeeper twice a month, or lawn work. Ask them to pay for respite care once every three months. Give them something ongoing that gives you the most relief–or that it’s something they value or would like to get noticed for.
• Focus on relationships first. Don’t be petty and try to isolate your loved one and in turn “punish” them by not allowing them to see their other children. You might not like that they’re not participating, but your mom or dad needs all of their children. They don’t need to be aware of sibling spats, not when they’re dealing with cancer, dementia, heart disease, or some other catastrophic illness. Encourage your siblings to spend time with their parent regardless of what they do–or don’t do.
• Choose not to fall into the vortex of resentment and anger. Give to your loved one wholeheartedly. Let go of what someone else does or doesn’t do. If they still refuse or avoid, then start to make other plans. Utilize community resources, church and neighbors are often willing to pitch in. Be grateful for those who choose to help. Your thoughts and energy are better spent on good thoughts than chewing on the bone of what somebody else should do. In the end, we’re only responsible for our own actions.
• Realize that many people are scared of caring for someone who sick or is dying, so help them get over it. We’re afraid of what we don’t know. It may look like your sibs are selfish and lazy, but it may also be that they don’t know what to do to help. They may feel pushed aside. They may have created all these barriers–I’m busy, I have too much on my plate already, you’re doing it so well why should I bother–in order to not face what’s painful or uncomfortable . Don’t make caregiving look so miserable! Invite them over to hang out. Have a pizza and movie night. Give them time to warm up to the idea. Give them something small to do and then don’t micro-manage them. Caregivers (and I mean me here) tend to be controlling–it comes with the territory–and we tend to be perfectionists. No wonder they don’t want to get involved. Learn to make it easy and inviting (even when parts of caregiving are clearly not–you dont want to scare them away).

I can’t promise that your brothers and sisters will ever come around. Some don’t. Then it’s your job to pace yourself and find others to help support you and your loved ones. It may not be ideal, but you may find a different kind of community/family to surround yourself with. We can’t control what others choose to do. Decide that you’re caregiving largely because you want to and you believe it’s the right thing to do. Once you start to let go of the “shoulds” your load somehow gets lighter.