Archive for the ‘Aging in place’ Category

Question from a reader

My father has Parkinson’s and my brother was his caregiver for years but he said he’s burned out and I need to take over as Dad’s caregiver. How can I avoid burning out like my brother did?

You must remember that if you don’t take care of yourself, you cannot care for your father. It is vital that you take some time every single day for yourself to prepare each morning and unwind in the evening. It’s not selfish. It’s part of healthy caregiving. Seek out other caregivers to talk to. Get into the habit of regular caregiver texts, phone calls and social meetings for lunch or coffee. Set up a schedule for time away each week, then reward yourself with a weekend away at least once a month. Take a daily walk, alone, if you can. Breathe deeply and purposefully. Nurture your hobby or start a new one. Stay connected to you friends and call on your brother for helpful advice. Find out what worked and what didn’t work for him and remember: this is not permanent.
Caution

Education is a Caregiver’s Friend

Library booksYou will repeatedly read about burned-out or stressed-out caregivers because stress is one of the most common features among those who provide care for their loved ones. The stress comes from many sources such as constantly worrying they aren’t doing enough or aren’t doing the right thing the right way. Also, it is the result of working long hours and feeling unappreciated. A prime cause of this stress is inadequate preparation prior to joining the ranks of family caregivers.

Caregivers must educate themselves on whatever medical conditions their loved ones have and learn as much as they can about nutrition, possible side-effects of prescriptions and how to motivate or engage people who may seem content to waste away. It’s vital for caregivers to discover all they can about local support groups and community resources as well as the challenges of aging and the demands on caregivers. It’s essential for caregivers to know their own physical and emotional limits. Burnout comes from many sources, so it’s important to know ahead of time, who will be available to help in an emergency and where to find daily comfort.

Hydrant

If you want to take a break without feeling guilty, enroll in a Red Cross CPR/first aid class. You’ll have a few hours to yourself, be able to socialize with others and learn or brush up on a useful skill. If there isn’t a local Red Cross office, call your fire department and request a class.

 

 

What is the cutoff point? Exactly when can you stop crying, stop caring and start getting your own life back?  There is no easy answer for this. Sometimes, the end of caregiving comes when the ones in our care recover enough to care for themselves, but more often, caregiving ends with the death of our loved ones. The fact that you are a caregiver means you can’t stop caring, even if you stop being a caregiver. You will never regain the life you had before, but when caregiving ends, your life will be richer for the experience. Years from now, you may long for just one more day, despite the sadness and anxiety you feel now. The key is to find ways to make your caregiving experience work for both of you. If you have a respite schedule set up, use it consistently. Step away. Seek help from family, friends or local agencies. You may need to make many phone calls or research online for hours, but help is available. Whatever decision you make, guilt should play no part. If you have to walk away from caregiving for a few hours, a few days or a few years there is no reason to feel guilty. You are doing the best you can and for that, you deserve to spend whatever time you need to take care of yourself.

Most often, caregivers are family members with little or no formal training on how to provide nursing care for their loved ones. They might feel guilty about illnesses or injuries that occur under their care. Education is an important element for caregivers. You don’t need to know everything about nursing or nutrition, just be open to learning about those who can provide the missing pieces of the puzzle. If you are a caregiver or contemplating becoming one, learn what options are available to you. Discover alternative sources for respite and get creative when you need guilt-free time away. Spend a few hours at the library researching respite agencies or schedule a visit with a nutritionist to discuss your loved one’s dietary needs. Take a day off to plan activities both you and your loved one can enjoy together by educating yourself to what’s available in your neighborhood. Check with your library and local hospitals for classes on health-related topics. Learn all you can, then relax and let the experts help you create a better life for your loved one.

Learn all you canKnowing that you don’t need to know everything is crucial to lowering your stress level. You can relax more if you simply coordinate experts who will care for your loved one’s special needs. There’s no need to hire a personal chef, but if you consult a nutritionist for menu ideas based on your loved one’s dietary needs, planning meals will be much easier. If your loved one needs physical therapy or has a regular hair appointment, you can use this time to take a short break, even if it’s a walk in the parking lot or a quick phone call to a friend. Sometimes, just putting space between you and the one you are caring for helps adjust your stress level.

Email your questions about caregiving to mary@marybrotherton.com

Caregiver Tip

medicine cups can be fun

Buy inexpensive, plastic “shot glasses” to dispense medications. They are colorful and can be reused. They seem less industrial than small paper cups and add a bit of whimsy to the routine. Also, they seem to be easier for arthritic hands to hold.

Thanksgiving & National Family Caregiver’s Month

Caregiver with his motherNovember is National Family Caregivers Month, and rightfully so, with more than 65 million family caregivers in the United States, alone. Family caregivers are full-time partners with their loved ones, and because of the complexities involved in providing care at home, entire families are affected. This is a great time for caregivers and their families to express gratitude, not just to the caregiver, but to the one being cared for, as well.

If you want to express gratitude to the caregiver in your family’s life, here are some ideas:

  • Give tickets to an upcoming local event and offer to stay with your loved one while the caregiver takes a friend or other relative.
  • Consider a magazine subscription in a hobby of his or her choice and be sure the subscription can be read online, if the caregiver prefers to read e-books.
  • Home-cooked meals are almost always welcomed by caregivers.
  • Offer to simply come and keep the two of them company for a few hours. Pull out the old hard copies of photos and reminisce together.
  • Bring casseroles for the freezer in microwave or oven-safe dishes for “bad days.”
  • Stop by with a picnic lunch or tea party in the middle of the day. Be sure you call first to avoid doctor’s appointments and arrive early enough to set it up in time for lunch. Make sure you do all the post-party clean up, too.
  • Have flowers delivered.
  • Stop by for a visit with no expectations. See what unfolds.
  • Give the gift of an afternoon off, with a gift certificate for a pedicure or movie.
  • Plan an evening to relieve the caregiver, but bring a designated driver so the caregiver can go out for a few drinks without worries.
  • Ask your siblings or friends to bring potluck and photos for an evening of nostalgia. Be sure you stay to clean up afterwards.
  • Offer to visit while the caregiver tends to personal needs like doctor’s or hair appointments.
  • Pay for a haircut.
  • When you are doing your weekly shopping, buy some special foods you know your family will enjoy. Add in some paper products so the clean up is easy and stop by with a “Care Package.”

Respite

Thanksgiving Dinner should be a time for family unity and a chance to share gratitude, spend time with loved ones, but for the family caregiver it is often just one more thing to manage. As our families age and adult children relocate, our traditions change with our needs. If you are the caregiver for your aging parent(s) you may be expected to resume or resurrect old traditions. You may need to compromise. If your siblings have created new traditions, discuss ways you can include your parents so the burden of a full-blown Thanksgiving celebration doesn’t fall entirely on you. Consider if it may be time to create a new tradition and remember not doing things the way they’ve always been done is not a tragedy. It can be the beginning of something better.

hugRemember to always be grateful and to show your appreciation, even in little ways, it can make a big difference.

 

 

 

Caregiving Ends but Giving Care Continues

End of days

Even though my immediate HANC tour has ended, my writing about caregiving has not. I’ve been writing a column for Senior Life called Caregiving Counts as a way to continue my tribute to my mother and to HANCs everywhere.

My first column was simple, yet important tips for caregivers that I pulled from the Internet. Here is where you can read the full  article.

You may also read here:

10 Tips for Family Caregivers from caregiveraction.org

  1. Seek support from other caregivers.  You are not alone!
  2. Take care of your own health so that you can be strong enough to take care of your loved one.
  3. Accept offers of help and suggest specific things people can do to help you.
  4. Learn how to communicate effectively with doctors.
  5. Caregiving is hard work so take respite breaks often.
  6. Watch out for signs of depression and don’t delay in getting professional help when you need it.
  7. Be open to new technologies that can help you care for your loved one.
  8. Organize medical information so it’s up to date and easy to find.
  9. Make sure legal documents are in order.
  10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Each month I include a question of the month such as this one:

My father has Alzheimer’s Disease and some days, I just don’t think I can manage when he yells at me and tells me to go away. What should I do?

The best thing you can do is remember that everything ends. One day, you will wish your father was still around to yell at you. When he has tantrum moments, try to understand he isn’t trying to hurt you. The disease causes him to say things and act in ways he would never do, otherwise. This isn’t personal, but it does hurt. Be sure you have a strong support system you can call on at these times and as soon as you can, put some space between your father and yourself. If it’s safe to do so, take a walk when he demands you leave. By the time you return, he will likely have returned to his gentler self.

Some months I offer a definition.

Caregiver

Merriam Webster defines a caregiver as: a person who gives help and protection to someone such as a child, an old person, or someone who is sick.

If you have a specific question about caregiving, please contact me by leaving a comment through Facebook or email me: mary@marybrotherton.com.

 

 

 

 

 

Do Over

There are many things I wish I could go back and do a different way, where providing care for my mother is concerned.

I can’t do over anything, but if I could, I would:

  • Move in sooner so I had more time with my mother.

  • Be sure I knew where all her documents were before moving in and avoid the needle-in-the-haystack searches.

  • Write a sort of contract with my whole family’s input so everyone knew our roles clearly. Know beforehand, who already had roles to play and what they were.

  • Include in that contract what I was able and willing to contribute and what I expected in return.

  • Set up a backup to the verbal respite plan. As good as it sounds when someone says, “Just call me if you need help,” and “I’m here for you,” I’d remember that words carry little weight at 4 in the morning or when busy schedules interfere with my need for time off.

  • Set up a backup to the backup so my breaks and respite care are ensured. Have an emergency backup in place before I need it.

  • Before moving in, take extra time to discover the family’s understanding of the situation. I’d include them more and make sure they included me, too.

  • Insist that all my siblings and their children take time to do a Four Generation photo sooner, rather than wishing we had.

  • Listen more.

  • Play more.

  • Dance more.

  • Sing more (even if it is off key).

  • Go more with the flow and less against the stream.

  • Clean less.

  • Communicate better.

  • Prepare for the finality of the situation. In other words, I would have a plan in place for when my job as HANC ends, rather than wondering what I should do.

I may have other areas I’d like to do over, but first, I’d like to hear from you. What would you like to do over in your life? Not just as a caregiver, but in your life in general or in your “other career,” what would you like to do differently, if given the chance?

Write me at marybrotherton@gmail.com

and let’s start a dialogue about change!

 

 

 

Make Self Care a Priority

HANCs – those people who call themselves housekeepers, activity directors, nutritionists and companions – may actually fantasize about the hour their roles as care givers will end.

ClockNo matter how difficult the path you are on, once your need to provide care comes to an end, know that your life will forever be changed. Many who ensure a better quality of life for others suffer long-term health problems, especially if they did not have a sufficient support team in place to help provide proper respite and long enough breaks for the care giver.

running out of timeIt’s not that care givers want to do everything themselves or that we are claiming our territories or that we feel no one else is capable of providing the level of care our loved ones have come to expect. We do not wish to impose on our friends and family members, despite their reminders to, “Call me if I can help.” Sometimes,  arranging a break seems to cause more work than relief and when your phone rings with question after question, while you are trying to relax, it’s often easier to just cut your losses and return to handle whatever crisis caused the confusion.Time blurs when you're having funTime and death wait for no one. While you are planning to take a break, some day in the future, your loved one could pass away or your own health might be compromised. Don’t wait to plan your breaks tomorrow. Find the help you need, today! Stop relying on those who promise to do better and have great intentions.

Five o 5Remember: most people work five days a week for eight to ten hours, then take two days to recuperate, run personal errands, relax and rest. They often get a full week’s vacation (or more) from their jobs and some receive pay for that week off. Professional care givers – whether in nursing home, assisted living facilities, or in-home providers –  typically work in three shifts, each no more than  eight hours each. They do not work 24 hours, seven days a week, 365 days a year – with only occasional, sporadic breaks and often no compensation. They do not sacrifice their personal lives in the same ways.

Time

Take time for yourself. Take a break. Take more than one. If you do not take the necessary time to care for yourself, no one else will step in to volunteer, despite their best intentions. Don’t wait until it’s too late or you find yourself unable to provide care because you are in the midst of a personal crisis. Care enough for yourself to make this a priority.

It is that important.

A Corner Office for a HANC

I’ve been promoted!

The new position didn’t come with a pay increase, but it did come with a corner office.

Office in the corner

Each morning, if I get to work early enough, I can sit at my desk and watch the sunrise. Since it’s on the ground floor, I’m able to observe birds in nearby trees, which can be a momentary respite for my eyes.

Small bird

            My new office also comes with surround sound, a fully stocked refrigerator and a snack drawer with all my favorite munchie-crunchies. Finally, I have a personal assistant who reminds me when it is time to eat or take stretch breaks. Perhaps one of the best perks of the job is how much freedom I have to be with family and the out-of-office scenic tours I’m expected to conduct.

bridge over untroubled water

            The truth is, nothing has changed but my perspective. I’ve been using my mother’s fifty-year-old kitchen table as a desk since I moved in with her. It’s still a kitchen table.

table

When I’m not at my computer or cooking or cleaning, I am with Momma, who may not appreciate being called my personal assistant.

Appointment checks

I realized I needed to adjust my point of view.

Sidewalk view

Rather than seeing her as a frail, elder demanding attention through pleas for constant snacks or drives to nowhere, I now see her as my private helper and partner in our grand adventure.

Road in Santee

            Whether I am blogging, editing, posting photos, writing or just goofing around with social media, it’s easy to lose track of time on the computer if someone does not distract me. When I go for walks, especially if I take my camera, I become lost in my own world. I tune everything else out.

Holding a camera

No boundaries and no timers or schedules are good for my art, but bad for the rest of my life.

Calendar

            My new outlook keeps me attuned to the truly important things – my relationships and my Self. My physical, emotional and spiritual self, with a capital S, deserves my focus. Rather than seeing my life through the dutiful eyes of a daughter who has given up much to provide support for a loved one, I now see myself as an executive HANC, with a side job that occasionally takes me away from fun excursions with Momma.

Female executive

            As her health and stamina slowly return to her, we’ve all noticed her personality is also making a comeback. Her wit and humor, long subdued by malnourishment, pain and dulled by medications, entertain anyone willing to spend enough time interacting with her.

Relationships

            Although it might be nice to have the hefty salary expected with a large, naturally lighted office, who needs that kind of stress?

Office building

Put it in Perspective

My lifestyle isn’t the only thing I’ve adjusted since making the decision to become my mother’s caregiver. I’ve had to alter my attitude, which has not been easy. Almost as difficult, I’ve adjusted my sleep-habits to accommodate hers and fine-tuned my diet to make her mealtimes easier, because I discovered the difficulty in trying to get her to change – anything.

My perception of reality is in a constant state of change.

Time

I remember when I believed my mother was Amazonian in strength and fiercely independent. She was always honest – brutally so – but she was usually agreeable and understanding.

Cookie goddess

She is still strong-willed and sometimes she can be contrary, despite her desire to be compliant. Like mother-like daughter!

In her heyday, this woman could hear a muffled childish giggle and immediately know which of her many children was up to mischief. Today, her hearing is so compromised that she habitually stares at the television without understanding. This leads to boredom I can’t always counteract. One or two in every bunch

Normal conversations are frequently lost to her and she sometimes mutters, “I still don’t understand, but I guess I don’t need to.” Yet, if we raise our voices so she can hear, she thinks we are cross with her.

            She sometimes acts like a child, but we both know she is an adult. Her aging  must be harder for her than it is for us, though it seems we are the ones making all the adjustments. I remember telling my husband that we should try to keep things as normal as possible for her. Her normal life means ours must sometimes take an unnatural detour.

Skydive to the destination

Once we moved in, I had to accept that I could not move the furniture – ever – because that kind of change disrupts her reality.

furniture

Once, she scolded my husband and wagged her index finger at him, saying, “Listen here! I am going to have my way, because this is my house. You hear me? It’s my house!”

pointing boy

My brother later asked my husband, “Which finger hurts more, this one or this one?” while brandishing his middle finger opposed to his pointing finger.

We all laughed over that and we now refer to it as the finger incident.

loose point

Many days, my husband and I must remind each other of our reason for being here. It’s not for family estate or an immense reward. Nor is it for recognition or honors. It is for the love of the woman we call Momma.

Mother of many

There are days I wish I’d hesitated or made a different choice when my husband asked, “Why don’t we move in with your mom and help her?”

Then, I put things in perspective and adjust my idea of reality and truth. I know I am where I need to be right now and I’ll greet each day to see what comes next.

It boils down to love. It’s not that I love my mother more than my siblings do, but love drove my husband and me to choose this life – at this time. I’m not the family saint or any kind of angel. Despite the adjustments and sacrifices, I am the lucky one.

Clover

My mother and I are making memories that I will cherish the rest of my life!Enjoy life

Some Days Need a Tea Party

Today, my mother and I had a tea party. Just the two of us.women in hats

My sister, Bernie is the ultimate tea party hostess. Once she and her granddaughter brought an elaborate portable tea party to us, I knew I could never compete with that.

Mobile tea party

Still, today, I knew that only a Tea Party would lighten the somber mood that had taken over since the recent winter storm that did little but provide an interesting photo op for me.ice on leaves

Momma and I wore hats and toasted each other with wine glasses filled with orange juice – and we ate leftovers.

Toasting with Juice

We didn’t have a bouquet of fresh Spring flowers or pink lemonade in champagne flutes. We did have fun, though.

            Most days, Momma wants to eat half a grilled cheese sandwich or maybe some soup, sometimes, an omelet. She eats quietly and quickly and soon is back in her recliner, searching for words in one of her books – when she’s not channel-surfing and grousing about other people not calling her.

tv remote

Today, I decided we needed a tea party, complete with toast points and the mush that is leftover from porcupines, a meatball made with rice and hamburger. I knew I could get Momma to eat a few apple slices, but only if they were presented properly, and she tried a Romaine leaf with some cheese and sausage.

Party food

We giggled together and remembered when Bernie brought Gabby out for a tea party.

Child behind flutes of lemonade

Momma filled up on a variety of tasty tidbits and for a moment, she wasn’t bored or blue. I live for those moments.

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