Understand What it Takes To Care January 10, 2013
Posted by ijwoods in Blog+.Tags: hopice, non-paid caregivers, preparations, training
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Well, I’ve taken quite a bit of time off to regroup, enjoy the holiday and make some great connections. But I’m feeling more strongly than ever to get the word out to friends and acquaintances about being ahead of the curve on end-of-life and caregiving issues, so it’s time to get back to writing. It may not be practical for some to get too far ahead of the curve, but many people are surprised how quickly they get blindsided finding themselves as a caregiver or being cared for. Almost everyone I’ve spoken with over the holidays is gravitating towards or in the middle of some kind of family caregiving situation. In my own experience, even with adequate time to get well informed, I still found myself with many seemingly small tasks that were far more worrisome than I anticipated.
One day it reached the point, in K’s cancer evolution, that she needed a hospital bed. We have a nice large king sized bed but she was rolling around in it so much that you wouldn’t know where to find her next. At the end of one day I actually found her pivoted 90 degrees and scrunched against the wall. The hospice nurse recommended we get a hospital bed brought in to make sure she didn’t roll onto the floor and get hurt. Great idea, and something I would never have considered on my own. A hospital bed has bars on both sides, much like a baby crib, with the ability to raise or lower the head or legs. The hospital bed came along with the hospice services, which made it incredibly easy to do.
The bed was brought over and I had it placed in our bedroom. The guys who deliver the bed are fine to set it up but they are not qualified to move anyone onto it. K was not walking around at that time either, so it wasn’t a matter of helping her shuffle over and hop in. They said I needed to call the fire department to have her moved. The fire department!? I just couldn’t imagine having the fire department come roaring into the neighborhood, with a team of big beefy guys stomping into the bedroom to move her. No way I was going to do that, it would have totally freaked her out.
I gave it some thought and decided to move her to the bed myself. I am strong and fit and K was down to a very light 80 pounds. My biggest concern was her neck because she barely had the strength to life her head, if at all. I worried that in her frailness her neck could snap or strain if I did not support it well during the move. I stood there for a while strategizing how to do it with the utmost care. First I made sure the hospital bed was all set with new sheets, special cushions and a pillow. I let the bars down and took a deep breath. This was a small thing but I can’t tell you how risky it felt.
I went over to K. She was conscious and staring at me. I told her what it was I was about to do and why. Not seeing any any alarm or revolt in her eyes signaled she was game. I took a deep breath and decided to go for it. I got under her carefully with my arms, cradled her head on my chest, so that it wouldn’t flop backwards, and gently put her to rest in the hospital bed. Everything was fine and it took less than five seconds. For such a small thing it was an amazing bonding experience. Well, it may seem like a small thing but not when you are in the middle of it and untrained. Looking back I should waited and called our designated hospice nurse for advice. I was very lucky that it worked out okay. I shudder now when I think about it.
A few days later, while caring for her, I needed to lower the bars of the bed so I could maneuver more easily. I pulled the latch to let the bars drop down but a little red flag in my head went off stopping me from letting them drop full force. The bars had some serious heft to them so I lowered them gently all the while watching her face. After easing the bars down I saw K’s face take on a disturbed and agitated look. Clearly something was wrong. Then I noticed – I had lowered the bars onto her right wrist! She had been laying there grasping the bars as if she were holding someone’s hand, but I hadn’t noticed, and so the horizontal support of the bars landed on top of her wrist. After seeing her expression it took a moment to figure out what the problem was and I immediately lifted the bars back up. I was terrified that I may have broken her wrist, but luckily all was well and the scowl went from her face. Thankfully, not only had I lowered the bars slowly but there was tons of soft padding between her hand and the bed. That one moment of being slightly conscious about making abrupt actions may have saved the day. Still, I was totally distraught and emotionally drained about this for days afterwards. K was very lucky to escape the potential harm of my amateurishness.
Back in October the AARP Public Policy Institute and the United Hospital Fund came out with a study entitled Home Alone: Family Caregivers Providing Complex Chronic Care that had some discomforting findings. In the executive summary it says, “Family caregivers have traditionally provided assistance with bathing, dressing, eating, and household tasks such as shopping and managing finances. While these remain critically important to the well-being of care recipients, the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once provided only in hospitals.” And the report shows that many non-paid caregivers are frightened and overwhelmed with the level of care they end up having to provide these days without training.
I can see great value for today’s family caregiver to get some basic training. It was something that would have given me more confidence and ability to respond more competently. Caregiving someone can be too complex to simply consider winging it. If anything terrible happens to our loved one due to our own inexperience and lack of training we’ll find ourselves haunted by it for quite some time.
I wish I could say there’s a lot of training support available but actually it’s not that easy to find unless you are ready to spend a lot of money. I’d suggest the first place to look for basic training programs would be with your local hospices. From my limited experience, and from speaking to others, you will find they are aware of many resources, offer quite a bit of services and will go the extra mile to help you. I found that some community colleges offer courses which, although they cost money, look like they are a good value. Also, check in with any universities or medical schools nearby. For instance I found that the U of Nevada School of Medicine held a free workshop for elder caregiver training specifically for the family caregiver. Programs like this may happen frequently, but you need to be proactive in seeking them out.
If anyone reading this has other ideas as to how a family caregiver can get some basic caregiving training without breaking the bank it would be much appreciated. Please weigh in.
Conscious Departures 
Ira,
So good to have you back writing, like many of us, I thoroughly enjoy reading reading your blog post!
Unlike parents who have nine months to prepare for the birth of a newborn, Caregivers are often thrust into a Caregiving role at a moments notice. With little preparation other than love and commitment, we find a way to muddle through the process hoping that we do the right thing for the one that we love and care for.
Your story about the bed and the bars with K really hit home with me. Even when we are ‘extra careful’ the slightest misstep can cause a problem. There were a number of ‘close calls’ during my Caregiving experience with Fr. Orlando. Even though he has been gone now 7 years, I remember them vividly…and learned from them too. I remember one particular evening where we were standing next to each other, I took my eye off him just for a moment only to watch him go over the top of his walker. Luckily, no harm but I think about those ‘close calls’ even to this day. Getting him in and out of bed, well…that was a learning experience too.
The best help and advice that I received early on in my Caregiving experience came from the nurse and the staff at the Adult Day Care center Fr Orlando attended when he was well and able to attend. I also like your suggestions about contacting hospice as most hospice’s are keen to the needs of Caregivers and often offer training and support groups for caregivers at no cost. One of the best online Caregiving support groups is Caregiving.com, lots of great Caregiving tips, too.
Hope this helps!
Thanks Chris that’s very helpful. You are very aware of how many of those simple tasks or day to day functions can turn deadly so quickly and yet it is so hard to get that across sometimes.
For finding training, I like the idea of the Adult Day Care Center and also the Senior Community Centers, they seem to always be offering various activities and holding special classes of one kind or another, perhaps they might have something. It also made me think of general community centers or even a YMCA or religious centers. So often these places of gathering for the community have a lot of things going on that most of us aren’t aware of. I’m going to check that out.
Reblogged this on The Purple Jacket and commented:
From one of the best caregiving blogs on the internet…Enjoy!
Even though I am an RN, I too would hesitate when alone and caring for someone who is ill, fragile and in pain. All these things can cause one to become tense and stressed and in a quick moment make a decision that could cause harm. Consulting with a hospice nurse or even an aid in a senior facility is required, especially when moving a patient. Initially I transferred my mom to the toilet within her facility, but as she got weaker, I always call an aid.
Thanks again for a wonderful post that will help many caregivers. Beth
Beth, thanks for your support and for sharing your experience. At a time when more people are expressing their desire to die peacefully at home and when hospitals and insurance companies are looking to manage costs and support those wishes, it is inevitable that more of us will end up in EOL caregiving situations, Isn’t it a bit scary that amateurs like myself are left in a position to be responsible for quality care with absolutely no training whatsoever? Going into the caregiving role K and I were mainly absorbed in sorting out the practicals of what happens afterwards, There was hardly any research or hard information detailing my role during those last months. It’s not like I didn’t ask, but I never got a compelling response. The hospice tried to make me aware, but it wasn’t strong enough to get through my fog. To tell these little stories is a bit embarrassing, but it’s important that the uninitiated get some real insight so they are motivated to be prepared for the caregiving role. .