Saturday, January 21, 2012

What is it like to be a “Care Receiver” instead of the Caregiver?

Last night I had a dream about caring for Robert. 

In my dream, Robert had a seizure and ruptured a disk in his back.  This was his last straw. 

The dream had Robert at my house for his weekend visit and he was uncooperative and surly.  He was angry about his condition. 
Robert refused to wear his helmet and threw it across the room.

Robert refused to use his walker and walked without it but with great difficulty and continued to fall into (and knock over) everything.  He knocked over the piano (I love how dreams put odd things into our minds – we don’t even have a piano).
Robert wouldn’t do anything I asked him to do.  He questioned why he had to have all of these problems.

Robert angrily asked why he couldn’t be normal.  
It was a nightmare.

Thankfully, in “real life” Robert is a good care receiver.   I often wonder what it is like for Robert to be so dependent on others (I know I would have a hard time depending on others: kids be warned!).  Robert really doesn’t seem to mind.  He knows he needs assistance in buttoning his shirts (although I recently bought him shirts with Velcro on the inside and buttons on the outside.  It looks like a normal shirt but he won’t have to mess with buttons!  I can’t wait for him to try them out this weekend). 
Robert relies on others to make him a good meal, keep him stocked in his favorite drink of 7-Up and, occasionally, treat him to ice cream. 

Robert never complains that he has to have a sink bath when he’s at our house or if I have to help him get cleaned up after an accident. 
Robert never asks “why me” because he believes in his heart and soul that God put him here for a reason and his purpose is to educate others about epilepsy.   His faith never waivers and, in fact, says grace for the rest of my family if we happen to be eating something and didn’t say grace first. 

Only when he says things like “I was trying to make you laugh” do I realize the face I must sometimes have on when doing things for him.  Very focused and trying to get as much done as possible (can I get Robert bathed and wash the sheets and get the sofa bed turned back into a sofa — all at once?), but without a smile.
Robert has accepted that he needs others to help him and tries to lighten the load for his caregivers with a little humor.

It’s amazing how a little acceptance, faith and humor can change a nightmare into just another way of life.  
Robert isn't only a good care receiver but a pretty good teacher too. 

I think I’m ready for more smiles today.


Sandy Spurlock said...

What a wonderful post! I am no longer in the position of a caregiver, but was for so many years. I wish I had known you then! I want to continue to learn from you because no one knows what tomorrow will bring. Your insights are amazing and I am so glad to have found you. You are appreciated!

Trish Hughes Kreis said...

Thank you so much, Sandy! I appreciate you reading and following our story. You are so right that no one knows what tomorrow will bring. I'm sure you were a great caregiver but if you ever are in that position again, please let me know. We'll get through it together!

Kathy Lowrey said...

Bad dreams, ugh!
But I am happy it was only a dream.

Robert IS a wonderful teacher.
Thank YOU, Trish, for being his words and sharing them with us:)

I too am grateful for knowing you!
Isn't it sadly wonderful that Robert and Hubby would introduce us?

I'm excited about Roberts shirts too. Can't wait to see how he likes them.

Trish Hughes Kreis said...

Tomorrow is the day to try out the new shirt. Robert likes to wear white shirts on Sunday, so one of the shirts is white and he can wear it tomorrow. Keep your fingers crossed that it works! I am also happy our guys (similarly named too!) brought us together. Your words always inspire me because of all that you do, Kathy.

Heidi Alberti & Atticus Uncensored said...

I don't like bad dreams, no matter how far from the truth, I always wake up feeling funky.

I don't think I'd be a very good care-receiver, although I'm working on a being a more gracious receiver than I have in the past. It's easier to give than receive love & care, I think. Another lesson to learn from Robert!

I hope you have sweet dreams tonight :)

Trish Hughes Kreis said...

Bad dreams mess up my whole day, Heidi! I've already warned the kids I'll be a terrible care receiver and to be prepared. :-)

Judy, The Reflective Writer said...

I so relate to the mood state brought on my a bad dream. You wrote such a lovely post in response, I hope it helped clear out the bad energy.

My husband and I talk about care receiving quite often. He has a dread about needing to be on that end of things, to need care. He'd much rather give it. To be dependent is very frightening, and I understand that. Robert sounds like he has some wisdom in this area, to be able to accept care and also look for what he can contribute. It's a real gift.

Judy Stone-Goldman
The Reflective Writer
Personal-Professional Balance Through Writing

June Sockol said...

I'm glad that Robert understands he needs help and is so willing to accept it. I'm sure he appreciates everything you do for him :)

Trish Hughes Kreis said...

Thanks, June. Robert does understand he needs help but is also insistent on doing some things himself which I think is very helpful in keeping him independent. He runs into trouble with some safety concerns -- sometimes he thinks he can do something but it wouldn't be safe for him to do. He is super polite too so is always telling me thank you. So glad his behavior isn't like I had dreamt! :-)

Trish Hughes Kreis said...

Judy, It is a gift to be able to accept help. I am in your husband's camp -- I would have a really tough time. It's great that you two have the discussions about it though so you both will know the other's wishes on the matter if the time comes to make decisions about care. Thanks for stopping by and I'm sooo happy you were able to leave a comment this time!

Franziska San Pedro said...

Hi Trish,

it is such a blessing to have a patient care receiver, I can tell you that! It's good that you don't pity him but you are empathetic enough to understand how he feels. You both have a great sense of acceptance and it makes such a difference.

I remember one of my family members whom we took care of and how she hated the circumstances that she had to rely on us. We were all totally worn out. And taking care of someone is a big and exhausting job itself but not being appreciated makes it so much harder...

Hopefully, I can take any challenge life gives me and be in acceptance no matter how difficult. I can't say how I would be, too hard too imagine.
You're a fabulous caregiver and you deserve Robert's patience! Applauding both of you :)

Jane said...

Hi Trish:

I thought I had responded to this. What a troubling nightmare.

Robert is such a sweet person. He is so at peace with himself and his faith.

You are a great caregiver so how can he not be a great care receiver.

Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
"You're braver than you believe, and stronger than you seem and smarter than you think."

Trish Hughes Kreis said...

Jane, That's a great way of describing Robert "at peace with himself and his faith." He really is!

Trish Hughes Kreis said...

Franziska, It does take up so much more energy to care for someone who has behavior problems or who is not willing to accept help. Acceptance is key and I'm sorry you and your family had such a difficult caregiving experience. It is hard to imagine how we would be, isn't it? I think I would be difficult but my former mother-in-law has alzheimers and she is delightful! When she knew she was losing her memory she just laughed and joked about it and never has been afraid of what was going on. Fear may be a big part of making a person a good care reciever or not. Thanks for dropping by!

Anonymous said...


I've been reading your blogs for at least an hour and I have to tell you that this couldn't have come at a better time. I've known about your blog for a while ((thanks to our golden-haired mutual friend with a shiny new bike (well, is it still new?)) but just haven't had the time to sit down and do any reading. Thanks to Robert and you for the reminder of why I became a nurse. At the skilled nursing facility where I work, it is so easy to get caught up in the craziness of the day and forget why we're really there. I hope that I can offer comfort, smiles and love to my residents in addition to my best nursing care. I also hope that I can offer the same to their families; comfort that their loved ones are getting the smiles and everything else they deserve from those that care for them when their families aren't able to be there. This is the second reminder in a week of not losing sight of why I became a nurse, it must mean something! So, thank you again. Looking forward to future posts!


Anonymous said...

PS: I'd like to print out your article "When a Loved One Needs a Skilled Nursing Facility" and share it with some of the staff at the SNF. Would that be ok with you?


Trish Hughes Kreis said...

KR, Oh my gosh. You have truly made my day. First, you are welcome to print out any of the posts if you think they would be helpful. I don't know if you've seen them yet but there are articles on caregiving resources as well as a few on how to choose a facility (June & July 2011 have some of these posts).

I admire the work you have chosen to do and hope that you and people like you stick with the profession. The good ones (like you) do make a difference and help not only the residents but people like me who only want the best care for our loved one.

Don't give up, KR! I appreciate the work you do and suspect you make more of a difference than you realize. Have a good day! :-)