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.

 

A Teen Encourages Others to Help

The following is a guest post by  Minaal Khan, an 11th grade student at John Champe High School in Aldie, VA.

As teenagers in the age of technology, we need to be less materialistic and spend time with people as well as our favorite devices. People are who make the world a better place and who provide beneficial social interactions. We need to stop ignoring people and start using devices less often. Helping people can make you a better, worldlier person. This will make you truly appreciate the world. Hearing about someone else’s life can inspire you and may even change you for the better.

Teenagers need to start giving back to the community and helping others. We are at the age that will define us as adults. If we do not start giving back now, we will never do it as adults. We need to be thankful that we are healthy and appreciate what the generation before us has done to ensure that we are raised properly. They left us a great world that we can make even better by spreading kindness and selflessness. Everyone deserves to have someone help them when they are in need, so we should be kind and care for people who may have neurocognitive disease.

Caring for people with Alzheimer’s helps you feel accomplished as you do something good in the world. It also reassures the person you were caring for that there is hope and kindness left in our world when so often all we see on the news is violence.

Caregiving is an act of kindness that the other person will remember and builds self-esteem. It does not require you to sacrifice several hours, you can also spend time with your friends or family.

Helping someone who has Alzheimer’s will also help the family of the person who has Alzheimer’s because they will know that someone is taking care of their loved one. They will not have to worry about finding a reliable caretaker which increases the cost of care.

Caregiving is extremely rewarding and can change the lives of many people, the caregiver, the person with Alzheimer’s, and the family of the person with Alzheimer’s. It also gives you a sense of accomplishment because you have made a change in someone’s life. We need to help others as much as we can.

 

4 Reasons People with Dementia Hate to Shower & How to Fix It

shower-head

1. You asked: When asked a yes or no question a person with dementia may not understand the question and automatically answer with a resounding NO to avoid agreeing to anything they may not want.

Why? Because it’s one of the first words we learn when beginning to speak. It’s short and powerful and it works if we repeat it often enough. Instead of asking, get everything ready and then gently say, “Your shower is ready,” and lead him or her into the room.

2. Room Temperature: When preparing the room make sure it is very warm. It may feel like a sauna to you but to someone who is frail it could still feel chilly. Make sure the water is warm also but make sure it isn’t hot. Test it as you would before bathing an infant. Have plenty of soft, warm towels at hand. Warming them in the dryer just before shower time is a good idea.

3. Modesty: Most of us have some body issues and are reluctant to have others see us naked and this could be especially true of an elderly parent being bathed by one of their children.  It’s perfectly okay to wrap a towel around their chest and one over their lap and bathe them through the towel. They maintain their dignity, stay warm, and get clean all at the same time.

4. It’s Scary: Imagine sitting naked on an uncomfortable seat in a little room with sounds echoing around you. You’re not sure why you are, how you got there, or what’s going to happen. Then all of a sudden something starts falling out of the sky and hitting you on your head, chest or back.

Dementia affects vision as well as memory and other functions. The person in your care cannot see the water falling from the shower head. It’s confusing and frightening and they want nothing to do with it. (Note:  The next time you shower pay attention to the water flowing from the shower head. How well can you see it?)

To help alleviate the fear and confusion use a hand- held shower head and start at their feet, moving very slowly up the legs, talking softly as you go along, have their favorite music playing if you can. Let them wash themselves as much as possible.

When bathing is complete wrap them in warm towels even before leaving the shower and remain in the warm room until they are complete dry and clothed.

Will this work all the time for everyone? Probably not. There will come a time when showers and baths are no longer possible and bed baths are the best you can do. Until then,  try some of these suggestions they may make things just a little bit easier for both of you.

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