A Fearsome Intimacy

Caregiving Fearsome Intimacy

When we hold our infants in our arms we are filled with awe and hope for the future. We envision a life of promises fulfilled. We never picture them feeding us, holding our hand to keep us from falling, or changing our underthings. I couldn’t type the word diapers. The thought of losing my dignity to such a degree is truly fearsome. In my mind I hear the words, “It’s enough to scare the pants off me.” The irony makes me shudder and chuckle at the same time.

The caregiver and the cared for locked in a fearsome intimacy. I don’t know where the quote above came from. If I did I would give credit here. What I do know is those five simple words speak a devastating truth.

 

40 Days and 40 Nights

lent

Lent is a time when many of us give up something we enjoy or commit to serving others for the 40 days and 40 nights leading up to Easter. Every time I reflected on what to do this Lenten season images of the many caregivers I meet and hear from kept coming to mind.

I saw you skipping meals and going without sleep while doing all you can to keep the one in your care fed and safe from harm.  I watched as you hoped and prayed for a few good moments in a chaotic day so you could take a shower or go to the bathroom.

For seven years as a caregiver for my father-in-law, Rodger, I did what you do. Lived what you are living not knowing how long it would last and how much it would change me. It is because I know how hard this is, how much you give up, and how dedicated to service you are that I commit to writing a post to support caregivers every day for the next 40 days.

Know that every day, not only at this time of the year, I pray for you and give thanks that there are so many of you willing to do so much for others. Blessed be.

 

 

 

 

Don’t Judge Me – I’m A Caregiver Too

 

sami-green sami-pink-hair

Samantha Guevara speaks out about what it’s like to be young, colorful, and seeking support from other caregivers.

When one thinks of a caregiver, I am not typically what comes to mind. Outwardly, I am young, heavily tattooed, and have gone through every color of bright, unnatural hair. Typically you will find me with a Starbucks cup seemingly surgically attached to my left hand, and my phone never leaving my right. I am part of an often glossed over group that is growing daily. No one wants to think about being 30, and having the responsibilities of a full time care provider for someone with Alzheimer’s or any other terminal disease. But, the truth is; caregivers are getting younger, and we face challenges that are unique to our age group.

The day my grandmother died,  I chose to walk away from a nearly 40k a year management job, and the possibility of having the IVF treatments that would lead to the children I had always so desperately wanted. I chose to leave behind my 3 bedroom bungalow, and trade it in for the uncertainty of caring for someone who has a terminal illness (all with my husband in tow). Within a week, I went from being the boss, to feeling utterly helpless. Every time I took my grandfather to an appointment, the doctors acted like I was not even there. They did not ask me about progress, and all the normal questions caregivers get. I was lucky there was a feigned look of sympathy. When I turned to others, I got the response “It can’t be that bad!”

I tried a support group. That went about as well as baptizing a cat. Several of the women at the first and only group I attended clutched their purses. One asked me if I was looking for the AA meeting. I guess it was the colorful hair, or the arms full of tattoos that threw then for a loop. I stayed for about twenty minutes feeling as if my presence was undesired. I skulked home defeated and poked around for a while trying to figure out where I fit in this equation. Over the next ten months, friends fell away, pregnancies were announced, marriages planned, and although they were moving on; I was standing still. I felt the darkness I imagine every caregiver battles. I held on with both hands to those few who remained. Those who understood.

Finally on Facebook I found a group of wonderful people going through the same thing. From losing memories, to losing basic abilities we all take for granted.  This group was an amazing outlet, but still seemed saturated with people who I had trouble connecting to on a personal level. I posed a question recently looking for caregivers under the age of thirty-five. To my shock, the response was immediate. People my age chiming in. It seems like me, they had also been quietly reading from behind a screen, hoping someone out there was like them. Someone who was supposed to be in their prime, but instead was changing comically oversized diapers and managing moods and meds.

I have a sense of immense relief that there are others like me. The young caregiver community is growing at an alarming rate. We are from all walks of life. Some of us do the amazing task of caring while raising children. Some work full time in order to guarantee their loved one has everything they need. We are a varied group who are battle hardened and amazing. So cheers to all my young caregivers! We are not alone. Together we fight to end this terrible disease.

Get Enough Rest, Really People?

caregiver-stress

Tips on how to recognize and cope with caregiver stress appear on almost every caregiver website, blog, and column. Too bad none of the advice works.

Click on the link below to learn why.

Why Caregivers Ignore All That Good Advice About Dealing with Stress and What You Can REALLY do to help.

 

 

A Caregiver Valentine’s Day

be-mineIn how many little ways did you and your spouse share the meaning of those words? Not only on Valentine’s Day but while living each day together.

Memories swell and it hurts when on this day nothing anyone can do or say will ease the pain of what these terrible diseases have taken from you.

Unfortunately, what may help him or her may very well make it more difficult for you. Dementia takes our loves ones back in time. They cannot enter our world. We must go into theirs if we hope to connect.

Here are some simple things to try in order to do that:

  • Play your song. The one you danced to when dating, or the one you chose together on a special day together.
  • Bring out keepsakes you collected on trips over the years.
  • If you have any homemade cards your children or grandchildren made, set them out where they are in easy line of sight.
  • Call him or her by the silly special name you used in the past.

Simply say,” I love you Valentine. Be Mine.”

If all of this advice is too painful, I understand. Ignore the whole thing and be kind to yourself. If you feel like venting, you can always do it here. I understand. Sometimes nothing works and all we can do is let our feelings out and start over again tomorrow as the living embodiment of lasting love.

How Many Hours a Week Do Caregivers Spend Providing Care?

It’s probably a lot more than you think.

exhausted

More

Aging In Home Interview

aging-in-home-pic

Aging in Home is an online resource for caregivers and seniors.  As caregivers we need all the help we can get and I am pleased to have been interviewed for their site.  Click on the link below to read the full interview and learn a bit more about The Imperfect Caregiver.

http://bit.ly/2lfVZKO

5 Practical Ways for Caregivers to Entertain Their Loves Ones

The following is a guest post by Jessica Hegg. Jessica is the content manager at ViveHealth.com.  Interested in all things related to a healthy lifestyle, she works to share valuable information that aims to improve the quality of life for others.

Note from the Imperfect Caregiver: I never had a day as a caregiver that was boring or with nothing to do. However, I did try to find creative ways to occupy my father-in-law when he was still able to accomplish simple tasks, including creating a precious keepsake for his great -granddaughter with my help and that of his home health aide. See photo below.

Jessica writes:

Sometimes it seems like there’s nothing to do – especially if you’re a caregiver who is taking care of an elderly loved one. Boredom is dangerous – not only for the elderly, who often are unable to participate in the same activities they loved as a youth – but for caregivers. Boredom can mean easy distraction, and a general decrease in mood, happiness, and satisfaction.

But spending time giving care to a loved one doesn’t have to be boring. There are plenty of activities that both you and your loved one can participate in to have fun together, and help pass the time. Here’s a list of 5 ways you can entertain your loved ones – and yourself.

  1. Reading Aloud

Reading aloud is a fantastic way to connect with your loved one. Whether you read a play, a book – or even just the news, your loved one will appreciate the effort you put into helping them stay current, or entertaining them.

If you have elderly loved ones who have vision issues or are in later stages of dementia or have reading-related disabilities, this is a particularly good choice – they can’t read on their own anymore, and will certainly appreciate updates about the world, or hearing their favorite books read to them.

  1. Enjoying The Outdoors

Enjoying the outdoors doesn’t have to mean strenuous physical activity – though if your loved one is in good enough physical shape, a mild hike or a walk around the park can be a fantastic way to enjoy the outdoors and experience nature.

But really, all you have to do to experience the outdoors is take your loved one out. Even if they’re in a wheelchair or otherwise disabled, enjoying a fresh breeze and the effects of nature can be a great way to pass some time, and allow you to decompress as a caregiver.

  1. Trying A New Hobby

Find a hobby to try with your loved one – or begin learning about their favorite hobbies. For example, if your loved one loves to knit, ask them to teach you the basics of knitting, and then collaborate on a project like a sweater or a scarf.

By helping them remember their favorite hobbies and enjoy their interests, you’ll make your loved one very happy – and maybe learn a useful skill or two in the process!

4. Looking Through Old Photo Albums

We guarantee your loved one has a bunch of old photo albums – and maybe even some slides from way back in the day.

Looking at these photos can be a great activity to pass the time, and to get to reminisce about days gone by with your loved one. You may even learn an interesting new thing or two about their lives – they weren’t always old, and certainly led interesting lives before they settled down to have kids.

You can also offer to digitize these albums or slides – making sure that they never get destroyed or lost, and allowing your loved one to easily view them in the future without digging them up from basements or attics.

5. Collaborating On Crosswords And Puzzles

Entertaining your loved one can be as simple as this. If there’s a crossword in the newspaper, ask them to help you with it. If it’s a word jumble, get them to do it with you. Or if you’re really looking to get into some puzzles, buy some simple jigsaw puzzles – and work your way up to more complex ones.

The process of doing a puzzle is fun and rewarding and can help bolster mental function by using parts of the brain that aren’t always stimulated in everyday life. So beyond just being a fun way to bond and spend time with your loved one, you’re helping them stay young and keep their brains in good shape.

Get Practical

These practical ways to entertain your loved ones – and yourself – are certainly not an extensive list. There are many other resources to turn to if you need a more extensive list, but these easy activities are a great starting point.

rodger-carducci-with-grandaughter-and-great-grandaughter_-all-rights-reserved-by-bobbi-carducci-copyRodger Carducci with his Granddaughter Kelly and Great granddaughter Ava.

Caregivers and Substance Abuse

Being a caregiver is far from easy, especially when the caregiver is responsible for caring for a parent, spouse or family member who is dying from a debilitating illness. Caregivers are often forced to watch their loved ones slowly sink into a deteriorating state of health and to put their own well-being and needs on the backburner to provide care for loved one.

As the population’s average age increases, more and more people who are not health care professionals are required to become primary caregivers for aging and ill loved ones. According to the Mayo Clinic, “informal caregivers provide 80 percent of long-term care in the United States.”

These individuals are almost certain to experience a wide range of emotions, such as anger, frustration, exhaustion and sadness, that can cause a great deal of stress.

According to researchers at the National Institutes of Health, “the caregiver’s burden is complex and complicated by multiple competing priorities. Because caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress, they may experience negative health effects, mediated in part by immune and autonomic dysregulation.”

As a caregiver’s stress levels go up, they become more susceptible to a number of health issues, including depression and anxiety disorders, compromised physical health and substance use disorders.

Factors That Lead to Caregiver Substance Abuse

Stress and declining mental health are linked to being a caregiver. Caregivers often have no choice in the matter of caring for their loved one and are frequently driven to social isolation and depression.

According to the Family Caregiver Alliance, approximately 25 percent of family caregivers meet the criteria for major depression.

Ninety percent of caregivers say the worry more or feel more stress since beginning to take of their charge, according to the National Alliance for Caregiving.

About 16 percent of caregivers report feeling emotionally strained and 26 percent say that taking care of an individual is emotionally difficult, according to the Family Caregiver Alliance. Approximately 22 percent of caregivers say they are exhausted when they go to sleep at night, and many struggle with their caregiving responsibilities.

For caregivers, drugs and alcohol — including prescription drugs — can be a way to escape stress. Substance abuse becomes a means to cope with their emotions.

According to the Family Caregiver Alliance, “caregivers are shown to have increased alcohol and other substance use.”

More than 51 percent of caregivers report taking more medication as a result of their role as a caregiver. About 10 percent report regularly abusing drugs or alcohol more often, according to the Family Caregiver Alliance.

Tackling Caregiver Substance Abuse

For caregivers, there are steps that can be taken to lighten the pressure they feel and help prevent substance abuse, such as:

  • Assistance: One of the best ways to get out from under the immense stress a caregiver feels is to allow others to help them with their responsibilities. Allowing a friend, family member or neighbor to do simple things such as pick up groceries or cook for the caregiver can make a monumental difference in the amount of stress the caregiver feels.
  • Goals: Caregivers are often asked to handle more responsibility than one person can reasonably take on at one time. Setting realistic daily goals can be a great way to get a hold of the priorities in a caregiver’s life.
  • Find Resources: Many cities and communities have a network of resources to support caregivers in this difficult phase of their lives.
  • Find Peer Support: Support groups for others going through similar situations can be extremely beneficial to caregivers who often feel like they have no one who can relate to what they’re going through.

Sources:

Bevans, M. & Sternberg, E. (2012, January 25). Caregiving Burden, Stress, and Health Effects Among Family Caregivers of Adult Cancer Patients. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3304539/

Family Caregiver Alliance. (n.d.). A Population at Risk. Retrieved from https://www.caregiver.org/caregiver-health

Mayo Clinic. (2015, March 7). Caregiver stress: Tips for taking care of yourself. Retrieved from http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

National Alliance for Caregiving. (2006, September). Evercare Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Retrieved from http://www.caregiving.org/data/Caregivers%20in%20Decline%20Study-FINAL-lowres.pdf
Sinha, R. (2008, October). Chronic Stress, Drug Use, and Vulnerability to Addiction. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2732004/

I thank Trey Dyer for this guest post.

About the Author: Trey Dyer is a writer for DrugRehab.com and an advocate for mental health and substance use disorder treatment. When Trey is not writing, he can be found cooking, fishing or playing indoor soccer.

 

What We Have is a Failure to Communicate

failure-to-communicate

You spend hours, days, weeks, months, years, becoming more and more isolated as caregiving takes over your life. Well intentioned friends and family who offered to help in the beginning drop out of your life as they tend to their own families and jobs.  When they do come to visit they see Mom or Dad on their best behavior. Somehow he or she is able to connect with reality long enough to convince visitors they are so much better than they really are.  They may even accuse you of abusing them or robbing them causing distrust and confusion within the family.

If only your visitors could see your parent beg to go home for hours or cower in fear because they no longer know who you are.

Fortunately there are now ways to make that happen and I encourage you to use them especially if your family members are too far away to visit often. They may not be able to come in and relieve you but they might be able to help in other ways once they see how much you are doing every day.

Don’t let distance keep family in the dark. The more they know the better chance you have that someone will step up to help.

Communication is key, no matter how you make it happen. Use any and all resources available to you including one or more of the ones listed below.

I urge you to take full advantage of video chatting to share your experiences and make it far more difficult for others to say, “I wish I had known how hard it was. I would have been there for you.”

Listed below are a number of resources to keep communication open.

Nucleus

Skype,

FaceTime,

Glide,

Tango, etc.

Email

Phone

Facebook

If you are using, or have used, any of the resources listed above to reach out to family and friends please share your thoughts on how well it works or worked for you. I look forward to hearing from you.

 

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