Being a carer can be very rewarding but often impacts on other areas of carers’ lives. VOCAL have produced a series of videos of carers’ own stories to offer a real insight into the issues affecting carers and how supporting them in their caring role can improve outcomes for them, their families and the person or people they care for.
To watch the videos go here
by Casandra Porter • August 7, 2013 •
I am exhausted and extremely tired but I have not had a good night’s sleep since we moved.
Everyone tells me to stop worrying, things will work out etc. I get it. They usually work themselves out despite the pitfalls we have to face on our way to our destination but I can’t shake this fear off.
When we were living alone, I didn’t sleep, either. I got on average, about four hours a night. If that. I was afraid to go to sleep and wake up to Marc having a seizure or needing some sort of help. But I made it work. Work and taking care of Marc. Lots of stress but I kept going.
I feel as if I am at a standstill and that is what sucks. I am used to doing. If not for Marc then for someone else. I had tons of people relying on me all the time but no one I could rely on myself. And moving minimized their dependency on me. It was to give me a break.
Yet, I am just now realizing, although I was always going, tired and angry at the lack of help I received, their dependency on me made me dependent on them. I needed their constant neediness to keep me focused and moving.
Now, don’t get me wrong, even though I am not working, I am not sitting around idle, either. I am doing lots of things. Just nothing that feels… productive.
Marc has been hell bent on regaining his independence. So, I pretty much let him and his friend wander. They do what they want whenever they want. As long as he’s taken his meds (which he pops his head into whatever room I’m in to tell me the minute he’s done it) then he has pretty much been having the time of his life. Playing video games, watching movies, cartoons, and playing more video games. Oh, did I mention, my husband is a gamer.
This is great! Because for a long while he didn’t even want to look at a video game. He didn’t want to do anything. He was so depressed. I am glad he’s happy and motivated to do something… anything.
But I, on the other hand, am feeling so demotivated. Which is the entire reason I keep having panic attacks and cannot sleep.
What’s sad is… there were a million things I wanted to do. Craft projects I wanted to start. Writing I wanted to finish. Classes I wanted to sign up for. Books I needed to finish or wanted to start. But I don’t have the motivation to do any of these things.
Mainly my days are spent trying to force myself to nap for more than five minutes at a time, worrying about Marc and the insurance issue and everything else, or cleaning. And let me tell ya, there ain’t much to clean.
I am my own worst enemy right now and I just want to slap myself and say, “Snap out of it!”
Today is Marc’s first doctor appointment with his new doctor. They couldn’t assure me they would see us until we got there. We have a plan to go to the ER and request the MRI there if they do refuse to see us; however, I am hoping that my biggest fear that has caused this paralyzing behaviour will be removed with this appointment and tonight I can sleep. This appointment is the biggest issue weighing heavily on my mind right now.
Wish us luck!
by Casandra Porter • August 3, 2013 •
I love my husband.
This is a phrase I often repeat, out loud or to myself, doesn’t matter. It’s like the instructions for shampoo, rinse and repeat.
I love my husband.
And having said that… He is a total pain in the butt!
He is the funniest, most caring and loving person I have ever known but he doesn’t take care of himself.
He loved working out. In fact, he was so in love with working out it was all he did before he got sick. His idea of a fun time was to lift weights while mine was to lift donuts. But he HATES to take medication. He hates talking about himself in terms of how he feels. Emotions, what are those? He has two settings: Whatever and Whatever Deluxe.
I remind my mom all the time, I don’t have kids. Her response is, “Yes, you do, one big gigantic baby.” And we laugh about it but deep down, I cringe. It’s true. Yet, the reverse can be said when there are things I’d rather not do, like take that walk when I could be eating that delicious chocolate cake instead. And after being chastised by Marc about my begrudging behaviour, I’d lace up my shoes and hit the pavement with him, whining the entire way.
And so since he begrudgingly does anything related to his health right now, I have created the dreaded checklist. After being at so many doctors appointments, I have learned how and what they check for and keep close eye on those things he could care less about.
by Cindy • August 1, 2013 •
I’m Cindy and I’m 57 years old, and have been caregiving for my 85-year-old father for several years now. My husband, Jim, and I are still sort of newlyweds, getting ready to celebrate our two-year anniversary on August 20, 2013. Jim works full-time. I’ve been on medical disability for the last 5 ½ years due to severe osteoarthritis and a back injury. I also suffer from depression and fibromyalgia, so I fight chronic fatigue and pain.
I plan on blogging about all these issues, touching at different times on the various aspects of this caregiving experience, including the stresses of being in a new marriage and living with my new husband in my childhood home with my dad, my dad’s extremely negative nature, dealing with my own issues of depression and pain, and dealing with the unknown road ahead.
My husband, Jim, and I moved in with my dad to take care of him on Memorial Day weekend of this year. We had been talking about the possibility of moving in over the prior several months, but were originally going to do it very slowly. Jim and I were living about 45 minutes away from my childhood home. My dad was originally being treated for prostate cancer and the beginning stages of dementia, as well as some heart issues (irregular rate and rhythm). He had pretty much stopped driving, admitting to me that he kept getting lost. (It was such a relief for him to make the decision on his own to stop driving!!) So I was going to his house at least once a week for grocery trips and to take him to the doctor. We had already told my dad we were concerned about him living alone and that he was going to have to either get into assisted living, or have us move in with him.
I took him to look at assisted living, but he was not impressed. So we had decided to make a SLOW move into his house, since we had a big house full of furniture and other “stuff”, and so did my dad. We were going to take our time and sell some stuff, make room, ease into it.
Then my dad got really sick and was admitted to the hospital. Further testing showed he had slow growing colon cancer and fast growing bladder cancer. My dad is 85 years old and has been a widower since my mom died 12 years ago of lung cancer. He’s not interested in any surgery, chemotherapy, or radiation therapy, which I totally agree with. They were able to remove the bladder tumour, but unfortunately, it’s the type of cancer that is embedded into the bladder wall and is a very fast growing cancer. He would have to have surgery for the colon tumour, which he opted not to have. The doctors say that the bladder cancer will grow so much faster than the colon tumour, anyway.
We ended up having to make our move fast instead of slow, since he could not be alone once he was released from the hospital. It was a very stressful move! The first month was sort of a blur. It seems like it took at least that long to find the boxes that held all the day-to-day items I needed, and for the three of us to fall into something even closely resembling a routine. As of this writing, we are about to end the third full month of this new living situation.
My dad, Jim and I all go to the same doctor, which has been very helpful!! Our doctor is a great woman whom I have known for about 25 years. Once we got moved, she recommended that I get hospice involved in my dad’s care, explaining to me that hospice isn’t just for “the very end”, like most people think, and that some patients are in hospice for one to two years. She made the referral and it was a great relief once he was admitted to their program. It’s reassuring to know that there is someone now that I can call any time, 24/7, if I have a problem or question!
Right now, a hospice nurse comes once a week to check his vitals, talk about his medications, and see how things are going. My dad is ambulatory and is doing pretty well right now. He does sleep a lot. He likes to sit in the kitchen and watch television. My dad’s house is a split level, so Jim and I have moved into the downstairs, family room part for some privacy. We installed a door to separate our space from the kitchen.
Another twist in my story is that I am very close to my 9 ½ year-old granddaughter and have had her every other weekend since she was born. So, every other weekend, she is now part of this new life at my dad’s house, too.
Here are some of the things I want to blog about in the future:
Dealing with my dad’s negativity – trying to enjoy time with him
Coping with my own illnesses as well as my dad’s
Figuring out how to not stress out and take care of myself
The fear of the unknown road ahead
Trying to maintain my personal and our couple’s social lives
Trying to travel, enjoy a vacation without worrying about my dad
Every other weekend – 3 generations under one roof
Moving our cat into a cat-hater’s house
I look forward to sharing my story with other caregivers. My goal is to let off some steam, commiserate with others, share ideas for coping strategies, and give and receive emotional support.
I love to write and I feel this blog will be therapeutic for me. I’m looking forward to getting to know you. Please feel free to give me comments, advice, or ask questions. Thanks!
Editor’s Note: Please feel free to connect with Cindy on her profile page: @kccindy56.
by atisMOM • July 30, 2013 •
My mom is very keen on when her monthly check comes in. I get excited anticipating her excitement. My husband and I have always done our best to do outings with her and to make sure she has money in her wallet, just because.
My family can’t seem to understand why we continue to give her money for her wallet because “she never really goes anywhere.” Just because…. She gets excited and happy just knowing that she HAS her own money. Even if it’s $1.00, she’s happy! “Why do you guys take her to buy the same thing over and over again? Well just because! She’s happy with a million new washcloths, 10 million towels. (I exaggerate, but she has A LOT). My husband and I find joy in her happiness at the store when she grabs what she wants and whatever she can fit in her arm on her lap.
So for August, our shopping trip is for…. sweaters. lol! “Mom, you have a ton of sweaters!” To that my mom replies, “Can I get the ones with flowers on them?” Ooook. Please don’t misunderstand, we are far from being well-off. We do continue with our financial struggles, but it’s not her fault that she’s in the state that she’s in right?!?! Even when none of her incontinent supplies and medication etc. were covered by insurance, we always made sure she had something!
Sometimes I feel like the bad days outweigh the good days by a whole lot. But it’s great days like that, that make it all worth it!
by Denine • August 26, 2013 •
(The following is a loose paraphrase of a conversation I had with Grandma.)
“Rule #1,” Grandma said emphatically. “Don’t rush me. I’ll get there.”
We were at the breakfast table, talking about my upcoming visit to the Dominican Republic. I’ve been preparing Grandma for this trip for the last few days, reminding her that I would only be gone for a week.
“Who’s going to take care of me while you’re gone?” she asked. I was pleased to hear no fear in her voice, just curiosity. “Who’s going to be on your team?”
I chuckled. “My team? Don’t you mean, your team, since they’re taking care of you?”
“No, I mean your team, because you’re the one who puts everybody in position.”
We reviewed her weekly schedule on the white board. “Who comes today?” I asked her.
“Umm…Eric. Who is he again?”
“Derrick,” I corrected.
“Oh right! Derrick. I know him. That’s my nephew,” she said proudly.
“Close! Who am I to you?”
“You’re my niece…no wait, you’re my granddaughter. So Derrick’s my grandson.”
“Right,” I confirmed. “He’s coming today. He’s going to take care of you the first two days. He called me the other day, said he’s really looking forward to spending time with you.”
She eyed me warily. “Yeah, but he doesn’t know about the washing,” she said, referring to the showers I give her.
“That’s true, but you won’t need a shower while he’s here. He’ll just be here a day and a half, and then…” we checked the schedule again.
“Friday,” she stated. “Your mother comes.”
“That’s right! And she’ll be here all week. And then before you know it, I’ll be back!”
She sighed deeply. “I just hope that your mother doesn’t rush me. She always wants me to jump when she says jump. And then I just SHUT DOWN and I don’t do anything!”
“Grandma,” I stated firmly. “You have to remember. I spend all day with you, and I’ve learned how fast you move. Mommy is just learning that, and she’s gotten a lot better about it. But you need to be patient with her, just like you expect her to be patient with you.”
“I don’t have any patience. This sickness took it all away.”
I gave her a stern look. “Just because you’re sick doesn’t mean you can’t be nice.”
She was quiet.
“You still have to treat people right,” I emphasized.
“I know, you’re right. That’s why I didn’t say anything. I know how to shut my mouth when I’m wrong.”
I laughed out loud.
She sighed. “I just hope that everything goes alright, that people understand how to take care of me.”
That’s when I got the idea about Grandma’s Rules. I whipped out my smartphone and pulled up the Notes app. “Okay, what are some rules that you have for my team?” I asked her.
“Rule #1,” she said emphatically. “Don’t rush me. I’ll get there.”
We never got further than that first rule. And I suspect that’s all Grandma needs, which is to have some input about her care. I printed out the rule in bold print and taped it to her bedroom wall.
We talked about other things—such as what she thought about her new home attendant. “She’s alright…but that’s really all I can say about her.”
She asked me if I ever get tired of taking care of her. “Yup,” I said. She gave me a wounded look. “Didn’t you ever get tired of taking care of your kids when they were little?” She nodded. “Well sometimes I get tired of taking care of you. And sometimes you get tired of me telling you what to do. But it’s okay, because we love each other and neither one of us is going anywhere.” “And I appreciate it,” she said. “But I think you need to get some help so you don’t wear yourself out.” Agreed.
Just before I helped her get into bed for her morning nap, she looked up at me and declared. “I’d like to give you some money for your trip.” She thought about it for a moment. “Do I have any money?”
“Yes, Grandma, you have plenty of money,” I reassured her, exaggerating a little. “But do me a favor—save it for me until when I get back so that I can buy some winter clothes.” I want to keep reassuring her that I’ll be back, and that we have the winter and many more adventures ahead of us.
“Okay, let’s do that then. I’ll talk to your uncle about getting some money out the bank.”
Knowing that she wouldn’t remember the conversation when she woke up, I simply responded, “Thanks Grandma.”