Evaluating the Caregiving State of Affairs
Feb 18 2011 in Your Tips by guest
(Editor’s Note: Today’s guest post comes from SeniorsforLiving.com’s Michelle Seitzer. Before committing to life as a full-time freelance writer, Michelle spent 10 years in the senior living and advocacy world, serving in various roles at assisted living communities throughout Pennsylvania and Maryland, and leading the charge for Alzheimer’s as a public policy coordinator for the Pennsylvania chapters of the Alzheimer’s Association. She began blogging for SeniorsforLiving.com in November 2008 and currently resides in York, Penn., with her teacher husband and two Boston Terriers. Follow her on Twitter and Facebook.)
Transitions and turning points are natural parts of the caregiving landscape. Make decisions, change decisions. Devise plans, undo plans. Settle into a rhythm and the beat changes.
One of the toughest transitions? Knowing when your caree needs more services.
Family caregivers know that things will change. They understand that their caree’s health will decline. They recognize that certain treatments may help but that, at some point, treatment alone will not suffice.
But knowing and doing are two very different things. It’s one thing to recognize when your caree moves into a new phase of the disease process. It’s another to stop and say, “She needs more help.” And then it’s another thing entirely to call a professional who can provide that help.
First, there’s the guilt thing. Why can’t I provide what she needs? What if the person I hire doesn’t do things right? What if he thinks I’ve given up on him by getting help?
If your caree needs more help, it doesn’t mean you have failed. It means that the person under your care has new needs to be met, needs that may require more specialized services or more hours of care than you can provide. You can’t add more hours to the day, so you may have to add more people to the caregiving equation…and it’s okay to do so.
Then, there’s the next step thing. What help do we need?
You’ll find your answers by taking time to assess the current situation. You may want to ask other family members and friends for their input. What do they notice? What services do they think would help? Even though it may be tough to hear their suggestions, input from outside your situation may provide you with helpful perspectives.
If possible, talk with your caree about your concerns. He or she will likely notice if you’re under pressure, which may in turn influence the quality of care you provide. An honest and open conversation may make all the difference.
If your caree visits the doctor regularly, then the doctor can probably tell you whether your caree’s physical condition requires more specialized services.
How you feel during your day may be the strongest indicator that caregiving is getting the best of you. You will know when you and your caree needs more services if you feel…
- …you don’t have enough hours in the day for what needs to be done (both as a family caregiver and as a person with other responsibilities and needs of your own),
- …stressed out (i.e., you can’t sleep, you’re depressed, you lose your patience easily, you’re eating too much, etc.),
- …overwhelmed (Which meds does she get on what day? When is his next therapy appointment? Where is the cancer specialist’s office located?), or
- …exhausted, especially after a good night’s rest or a period of respite.
If you identify with even just one of the above characteristics, then it’s time to evaluate the caregiving state of affairs. You can gain a better understanding of your situation by asking yourself these questions:
- Which tasks and responsibilities feel like a struggle?
- What times during the day do you feel the greatest amount of stress?
- When do you find yourself running late, losing your temper, scrambling for a solution?
- What do you find yourself dreading or hating?
- When do you find yourself in a tug-of-war with your caree?
- What times of the day are tough for your caree?
- When during the day does your worry about your caree intensify?
Your answers to these questions will help pinpoint when and with which tasks you need more help. Then, begin brainstorming options. Solutions may be scheduling more respite or hiring a cleaning service or delegating more responsibility to your children/spouse. Look for professionals, like home care agencies, to manage the more complex and intense care needs.
Above all, remember that being at your best means you have to take care of yourself. If you’re not factoring your needs into the equation, things will eventually fall apart.
Living in the moment with a spirit of flexibility is crucial to successful caregiving. Easier said than done, right? Of course – but there is great freedom in flexibility. Letting go means accepting what is to come without putting the entire burden on your own shoulders, a weight that even the strongest person cannot manage forever.
How did you know when you and your caree needed more help? What additional help did you get? Please share your thoughts in our comments section, below.
Visit SeniorsforLiving.com to find out about home care options that may provide some assistance to you.
Resources
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Bette said on February 18, 2011
Michelle,
Thank you for these words. I love how you explain that “transitions and turning points are natural parts of the caregiving landscape”. I am certainly finding this out–almost daily with my mother who is experiencing decline within dementia.
Knowing you need more help, and getting it, are definitely two different things. I’ve been dragging my feet on this, with the best intentions of lining it all up. Wednesday I asked the Home Health Agency that we use, if we could be introduced to new caregivers, so their availability might improve for us. A new caregiver came, but her car was too high for my mother to get in to. So…for today, I thought, no problem, I’ll fill in. The kids and my mother were fed, my mother was ready to go out the door, and then I realized her depends needed to be changed, at that same time, Marah (who was suppose to be inside) fell off the trampoline. All was okay and we were able to move the appointment ahead 30 min., but I look at this as definitely an experience to learn from.
I need more help and not just for appointments anymore. I like how you remind us that we cannot add more hours to the day–but we can add more people.
I am reminded of my mother’s added needs, particularly when incidences like this occur. I need more people. (:
I drag my feet with this one because of the effort and energy to get it all into place. After today, I know I can’t drag my feet any longer.
Thank you so much for your post, I appreciate it very much, and it came on the perfect day!
Michelle Seitzer said on March 3, 2011
Bette, I am glad to hear that the post was helpful; I only wish I could do more to help you! In my years of working with elders and their families, particularly those caring for a loved one with dementia, I have seen firsthand how difficult it is to be in your shoes right now. I also watched my mother and grandmother struggle with caring for my grandfather when he had Alzheimer’s. I actually just wrote a guest post on our family’s experience; feel free to check it out: http://www.transitionagingparents.com/2011/02/09/when-alzheimer%E2%80%99s-hits-home/.
I think you nailed it right on the head when you said “I drag my feet with this one because of the effort and energy to get it all into place.” It takes so much energy to make the arrangements, energy that, understandably, you don’t have given the immediacy of your mother and kids’ caregiving needs. Do you have a friend or family member who is an organized, Type A, plan/delegate kind of person? Perhaps he/she can sit down with you and hash it all out together, dividing up the phone calls you need to make or applications to fill out? Maybe having help on that first step would get you to the next one with greater ease? Because I know that you need all the energy you have for caregiving, but as you know, you also need more help.
Again, I’m so glad to hear that the post came on the perfect day for you, Bette. I strongly encourage you to get someone to help you get help (as repetitive as that sounds)…because it does take a lot of energy and effort to make those decisions and plans, but you absolutely need to do it – for the benefit of your health, your mother’s health, and your family’s health.
I also just wrote a guest post on respite care, which is so, so, so important for caregivers like you who are caring for kids AND Mom (and Mom with complex care needs, no less – all the while watching her decline and grieving that loss): http://networkedblogs.com/eL6wY.
At the main blog site that I write for, you’ll find a comprehensive Alzheimer’s Resource Guide that also might be helpful for you: http://www.seniorsforliving.com/blog/2010/11/02/the-alzheimers-resource-guide/.
Bette, again, I wish I could do more than send you lots of links and encouragement via my laptop here, but I do hope that you find the help you need and realize that you are doing something quite extraordinarily brave and loving every day, even on days like the one you mentioned above. You are amazing! All the best to you and your family!
The Style Crone said on February 19, 2011
Thank you for your post. We recently needed more resources and it was a painful transition. Communication is the key for us, and it’s not always easy to speak the words! Living life on the edge!
Michelle Seitzer said on March 3, 2011
The Style Crone, you’re welcome! I’m glad you found the piece helpful although I’m sorry to hear you’ve just been through a painful transition. You’re absolutely right – just because communication is key doesn’t make it any easier to do. Thanks for your comment, and I wish you the best in your caregiving situation.