I decided to do a post from the perspective of a care giver, and the family and friends effected by my condition. Over the past two years I have had to rely on my family and friends for almost everything. This doesn’t only affect me, but those closest to me as well.
In this blog you will read from six different perspective. I have not done any editing to these posts. These are the exact words from these six people. I hope you enjoy reading.
I cannot imagine the role of a full time caregiver. Our short time helping our granddaughter left us feeling so grateful that she has a very supportive husband who has been with her every step of the way.
We spent ten days helping out any way we could - making sure she got medicine on time, cooking, cleaning, just the normal everyday things we would be doing at home. The big difference was the emotions involved. Watching anyone suffer and in pain is hard, but when that anyone is a granddaughter that you love with all your heart, it really gets to you. You want so badly to help - to make the pain go away, but you can't!!! You can only go to bed each night praying that she will get through the night without a lot of pain, and that tomorrow will bring answers, healing, and peace.
“When we learned of this disease, not from school, but by our parents sitting us down and explaining what was going on, we did not know what to say. We just knew something would be different at home. Before we understood what to do, we would stand or sit around Sandee when she was in pain and try to emotionally support her. A child at eight years old and another at seventeen, we started to handle medication for Sandee and documenting the times she took it. We try our best at what we can. We lend our ears when we can. It is important for her to know she can talk about what is bothering her to us. We have a goal, it is to get Mom better. We love you Mom. We are here for you.”
“When Sandee asked me if I would mind writing something for her blog my first thought was “I’m clear across the country. What can I say that could contribute?” The more I thought about it however, the more I realized that as a mother, as HER mother, I could talk about the pain I feel for her when we are talking and I hear her draw a deep breath just so that she can formulate the next word. Or I could talk about how it frightens me when I look at her pictures and see how much weight she has lost. Or the defeat I hear in her voice at times when she tells me “Mom, I’m sorry but I have a lot of meds in me and I’m having a hard time concentrating.”
I spent several weeks with Sandee last year while she was admitted to the hospital. Watching her cry in pain for sometimes hours on end was agony. When she would say “I can’t do this anymore” my heart broke. When she passed out from both the excruciating pains and from the meds they were giving her, I felt helpless. When she OD’d from the mass quantities of drugs and I watched them push Narcan to revive her I feared for her very life. When I think about one morning during her hospitalization that I was supporting her and she suddenly went limp in my arms I felt a piercing in my heart that still haunts me.
It’s a terrible thing knowing that one of your babies is so sick and there is nothing that you can do or say to make her better. The only thing you CAN do is and laugh with her on her good days, listen to her and commiserate with her on her bad days and hang up the phone and cry because she’s hurting and you can’t fix it. And pray. Pray for relief from the pain. Pray for strength for her to continue to fight. Pray for a solution in the near future so that this baby of mine, this mother to her own babies, this wife to a man who adores her can be healed and get back to living the life that for the last two years has robbed her of simple things like playing in the sun with her kids, going out to eat with her husband and just enjoying life. “
“Caring for someone with a life changing disease is never easy. Caring for a family member is even harder. As a parent I’ve cared for my child that was totally bedridden from an auto accident. As a spouse I cared for my husband with kidney cancer. My niece now has a pancreas disease. She lives all the way across the U. S. and I can’t care for her. But I can give her an ear to listen to her when she is down. And tell her funny things to make her laugh! People always want to know what they can do to help. I learned that physically there is not much you can do. But mentally and verbally you can give them a lot of support. When they don’t want to talk, let them be quiet. When they want to talk or vent, let them! That helps more than you can understand! Luckily, my niece has wonderful support system from her amazing husband and children that are there to help her physically and mentally! Everyday life is like a winding road, a lot of twists and turns. When you are ill, unfortunately you have more sharp turns than you think you can handle. It is our job as family and friends to help them handle those sharp turns. It’s not an easy road to travel, but with a good support system the roads get a little easier to travel! You’ve got this Sandee! I love you!”
“Sometimes the best way to help is to back off. Unfortunately, that's not in my nature. I'd be glued to her 24/7 if it was possible. When I am home, I want to do everything for her. If she's hungry, I'll go get her something to eat. If she has to go to the bathroom, I'm going with her. If she's cleaning something up, I tell her "sit down, we'll (the kids and I) get it". The problem, and this can be hard for me, is that performing activities of daily life is important to mental health. I've gotten better at letting her do the things she can do. She'll tell me when she needs help. If she says she's getting up to get something to eat I say "okay, I'm right here", and pause the TV show or stop doing whatever it is that I'm doing and listen intently for any signs of trouble until she comes back. If she's headed to the restroom, same thing. I do (this is the first she's hearing of this) sneak down the hallway sometimes and stand patiently outside the door until I hear the flush. Then I sneak back to the living room and wait for her to come back. I've even been known to shoot a glance at the boys, and they understand that it means "go hover near wherever she is, pretend to do something, and come back when she does". We don't interfere when she's having good times though. That's just not helpful.
There's a quote on our fridge. It ends with "Remember, you are wounded, not broken." Wounds don't hurt all the time. When the wound gives you a break you should take advantage of that break. Part of taking care of someone is allowing them to enjoy that break doing things that make life a little more normal. Rely on the fact that there is enough trust and mutual respect that you will be told when your help is needed, and don't help when it's not needed. Sandee is indeed wounded. She spends a lot of time dealing with that, I'm there for every step. During those moments when she isn't hurting though it's not my place to hover over her. My time is better spent putting a smile on her face. Let her do the things she can do, and find things we can do as a family that will help her forget, even if for a short time, that there is a wound”
Tricia- Sister In Law
“Sandee is by far one of the strongest people I have ever met in my life. Long before she was diagnosed with pancreatitis, Sandee was an extremely guarded person. Her strength border-lined stubbornness. She had been going at this thing we call life, alone, with no real support and became accustomed to not asking for help, even when she really could have used some.
We’ve shared stories of heartbreak, loss, hard upbringings and needing to grow up faster than we should of. On so many levels, we are very much the same person.
When Sandee first became sick 2 years ago, all I could do was offer my “prayers” or ask “can I pick you up anything”. I had no idea how bad the pain was or what exactly she was going thru.
Trust me when I say I know pain. I have felt unimaginable pain. The pain that makes you want to give up and just end it. But my mind didn’t want to believe that she was going thru anything close to it, or even to think her pain exceeded anything I’ve ever felt.
For almost a year (before Sandee got sick) we didn’t talk. Our stubbornness made us distant and we seized all communication over a “miscommunication”.
I think Sandee agrees with me when I say I am so thankful for that “breakup”. What came out of that dark time was a meaningful, caring, true relationship. We have naturally grown to truly care for one another. I thank GOD every day for Sandee, my seester. I couldn’t and never want to think of my life without her.”
Thank you so much for taking your time to read with me today!