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Caregiver Appreciation Day, 2015

Thank you for trying to understand chronic illness. #Spoonie #caregiver

Today, November 13th is Caregiver Appreciation Day.

November is Caregiver Awareness Month. If you have a chronic illness or disability, you have carers. Even if you are not confined to a bed or home-bound, you are still receiving support from someone whether it be a spouse, parent, family member, friend, professional caregiver, online support, or your physician. Today, make sure your carers know that you appreciate the big and small things they do to make you more at ease physically or emotionally.

If you are a carer and feel overwhelmed at times, please know that you are not alone. Below is a quote from the book, The Mindful Caregiver: Finding Ease in the Caregiving Journey:

“Many caregivers share that they often feel alone, isolated, and unappreciated. Mindfulness can offer renewed hope for finding support and value for your role as a caregiver…It is an approach that everyone can use. It can help slow you down some so you can make the best possible decisions for your care recipient. It also helps bring more balance and ease while navigating the caregiving journey.”
Nancy L. Kriseman

If you are being cared for by your spouse or vice versa, I highly recommend reading the book, Healing Together:

“In a relationship between two people who may be reeling after a trauma, a commitment means that they are taking an active and involved role in addressing the situation they are facing. It also implies a commitment to each other during the recovery of trauma- an understanding that no matter how rough it gets, the other will be there. You intend to face adversity together, with a strong commitment to each other and the future.”Healing Together: A Couples Guide to Coping with Trauma and PTSD

If you are supporting someone through a chronic illness or disability, please check out one of the groups on Facebook to find support and to have that crucial outlet for yourself. Caregivers can feel as isolated as the person they are caring for at times, but don’t know who they can talk to. You are not alone, and there are people to share your burdens with.

We have so many events to raise awareness for our different diseases and create unity among people with illness, but we should also raise awareness for the plight of caregivers. You are so beloved to us. You deserve a parade! Thank you for being our silent partners on the journey.

Today we celebrate you.

If I Ask You for More: poem about the caregiver/patient relationship

About My Home Health Aid

I’ve started with a home health aid for the first time after considering it for a while now. Many people have asked me how it has been to have a home health care professional, so I will share a little bit about what the past two weeks with a professional caregiver have been like for me.

Nearly all of my doctors have suggested I hire professional help over the past four years of being bed bound from chronic illness, but both you and your family must be comfortable with that arrangement. Also, with my hypersensitivity to sound, light and worsening pain with speaking and movement, it might not have been conducive for minimizing pain when these problems were at their worst. Now that I can tolerate visitors at times and I am doing better with short, quiet conversations, I was curious to see how I would do with a professional aid. Also, I have needed more help recently, so I am very grateful to have an aid to assist me.

I have scheduled the aid to come in short shifts and she allows me to take lots of breaks, though I still end up sleeping for the rest of the day. I may start making lists for her the day before she comes so I don’t wear myself out or in case I wake up feeling too bad to communicate. I am still getting used to having someone who isn’t a loved one do things for me, but so far she has helped with things that I might not have asked for otherwise.

I was pleasantly surprised that my new caregiver walked into my room on her first day knowing all of my health concerns, special needs and requests. Even though I had been evaluated by a nurse prior to making arrangements, I assumed it would be a bumpy start- it wasn’t. She is certainly a professional! She is so sweet, kind, gentle, and very attentive. I liked her from the moment I saw her, and my family also likes her, which I was very happy to hear.

A professional caregiver can prepare meals, do light housework, laundry, help with bathing, dressing, run errands for you, take you to your doctor appointments, make phone calls on your behalf, or help you with special health needs you have arranged with them. If you are more mobile, they might act as a companion, going different places with you to make sure you are comfortable and have your special health concerns cared for.

Because this is a professional caregiver, I feel I have more independence and I am making more of my own choices again. For anyone who is being cared for by family or a spouse, you understand how important that is for your sense of self. With family members, my chronic illness issues and episodes can be distressing for them at times, and while I am so grateful for their willingness to help me, I hope that having an aid to help will also give them a bit of a break.

On the first day she arrived, she organized my room in a way that would suit me better, and moved a few things around for me (she is as quiet as a mouse). On the second day, she helped me with a sponge bath, put lotion on, and helped me change my clothes. Earlier today, she gave me a bath for the first time, changed my sheets and cleaned up my room. I was very anxious about the bath since that is one of the most difficult things I have to do apart from going the doctor, however she was such a great help. Aside from my usual after-bath fainting spell (which she handled like a pro), we both managed pretty well and got me clean! I have a lot more confidence going forward after today, and I feel she and I can conquer more difficult tasks together. The next time she comes, I’ve arranged for her to ride along with me and my father to my doctor’s appointment so she can see how he transports me from the bed to the car, then from the car into the Dr’s office- just in case she ever needs to take me anywhere.

I have big plans to get much stronger this year, so I’m hoping my new caregiver and I will be doing more and more things together. She is a lovely and compassionate woman, and I look forward to making her into a new friend!

Learning the Gift of Gratitude

Gift of Gratitude poster "Gift of recieving" abodyofhope.wordpress.com #gratitude #spoonie

Have you ever thought that you are the best friend you know? Are you the most responsible, caring, compassionate, shoulder-to-cry-on kind of friend who drops everything to be there for the people you love? Have you ever wished for a friend like yourself?

I used to think that. Although I so adored the people in my life, there were times when I felt some of the things I did for them went under-appreciated. When I had problems in my own life, when I needed someone to make me feel better, I felt empty handed. Sound relatable?

I was a doer, a giver, I needed to be needed. I set my life up so that I was the go-to person for all of my people. I was the Olivia Pope of my world. Even when I moved to a different state, within months I was the one person anyone who knew me could count on. I constructed a safety net for everyone else, but when my own life turned upside down in the form of chronic illness, I felt there was no one to lean on.

Even after illness set in, things did not change. In fact, I felt that no one had a grasp of anything I was going through. For the first time in my life, I was desperate for some care from others and it seemed that no one knew what to say or do for me. Looking back now, some people were generous, and a few did reach out to me. I think it’s because I never learned how to ask for help before, I couldn’t recognize a gift of compassion and I was too prideful at the time to see when people were trying to be there for me.

I was so programmed to say, “No thanks” and “I’m fine” when people tried to help me out. I think I probably pushed them away without meaning to. I didn’t fully learn the gift of receiving until later on.

Sometimes tragedy is like this. The harder things get, the more clarity we can find.

You get so accustomed to being self-reliant and needed by others for so long that when it is time to accept help from another person, it’s like a foreign object that you naturally repel.

People who cared about me wanted to be there for me, but I usually shut them down. There were those who never knew what exactly to do or say, but they tried to just be in my life. I know now that the people who stick around in uncomfortable times are keepers.

Letting loved ones know how exactly they can help makes the people around us feel less powerless. If you give your loved ones specifics, they can learn how to better help with your complex needs. Hints and mind-reading definitely doesn’t count.

I know from personal experience that receiving help and asking for what you need can be a humbling experience. It’s lovely to help others but it can be humiliating when you’re the one who needs the help. That is the first thing I had to try to accept. You will have anger about it…try not to take it out on those giving to you. Don’t say things like, “I’m sorry you have to do this for me,” or “you will get tired of helping me,” or “I can tell you don’t want to be doing that for me.” Don’t critique their attitude, or predict future resentments. Instead, lead with gratitude. Say “thank you.” Your appreciation makes others feel positive.

Gratitude isn’t only an emotion, it’s also a state of mind, and a form of personal expression. The great thing is you can choose to be grateful even at times you don’t necessarily feel that way.

You already know how good it feels to do for others. Learn to be a gracious receiver.

Remember, you are worthy enough to accept the very thing you do all the time for other people. If the situation were reversed, would you be there for your loved one in the same way?

It has taken me a while to learn that lesson. I am still learning… Those who give of themselves are always teaching me to be humble.

I had to consider why my life had always revolved around being helpful, yet I could not receive the help offered to me. To top it off, I was too prideful to ask for help.

When I was finally able to say “thank you” and mean it from the bottom of my heart without resentment, anger, shame or fear: gratitude swept over me and lit up everyone in my life like Christmas lights.

Before, giving and being needed was how I defined myself. Learning to receive showed me the love everyone around me had to offer.

This lesson has been such a challenge; I am still learning to receive and to appreciate the blessings in my life, but the gift of gratitude has been a life-changing lesson. I believe learning to receive with a grateful heart makes a person a more understanding, more compassionate giver.

People love you and are there for you, too. Maybe not in the way you want them to be, but they might be exactly what you need. You are worthy of their love and their help.  Please don’t miss out on receiving the blessings that God is trying to bring into your life.

If I Ask You For More: poem

~If I Ask You For More~

If I ask you for more, are you sure that’s ok?

Will you break into pieces?

Will you just blow away?

*

If I ask you for more, are you sure that’s ok?

Will it eat up inside of you until your heart turns gray?

*

If I ask you for more, are you sure that’s ok?

Would you think me a burden and pack me away?

*

If I ask you for more, are you sure that’s ok?

If I’m not the same person, will you leave or you stay?

*

If I ask you for more, will WE be ok?

Can you just take my hand and sit with me today?

a Body of Hope

*****

Today is Caregiver Appreciation Day. Let those who have supported you along your journey know how much they have meant to you.

Please visit Maria Jose’s Etsy shop for a wide selection of heartfelt multicultural drawings and unique gifts. Check her treasures out and purchase something for the holidays!

Green Tree / Fall

Tree Photo| Green Tree / Fall Poem #loss #death #sympathy

Tree Photo by Marie Hunter

~Green Tree / Fall~

Thank you, Green Tree.

For stretching out to meet each day unafraid.

Your leaves reached out to touch the morning rays.

Courageous branches held the birds and squirrels as they played.

You appreciated the spring rain, Green Tree.

Soaking up only what you needed.

Surrounding plants shaded by your un-impeding canopy.

Now, as you break and change, don’t be afraid, Green Tree.

Don’t hold back your leaves from color.

No one will question your strength, Green Tree.

Your beauty will remain.

Your life was not in vein.

As your last brown leaf exhales to the ground,

The forest will remember how you stood so proud.

Don’t fear the change, Green Tree.

A Body of Hope

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