Family caregivers

My Mom's Words are Still True Today

Hazel and Roy Hale

Sixty-two years ago today, my Mom and Dad became husband and wife.  Two months later he was drafted into the army and served the next two years in Korea. As I listen to the words this young bride wrote so long ago, I look at them now and see that the love they had then is just as fresh today.
My Mom was recently diagnosed with stage III ovarian cancer.  She and Dad are staying me while she receives treatment for this life threatening condition. Though Mom’s attitude throughout this ordeal has been remarkable, Dad has been just as amazing. Though he is 82-years old and from that generation where men did men’s work and women did women’s work, he is the perfect caregiver for Mom.  He stays right by her side, always.  She has been in the hospital three times since arriving her and he stayed by her side, night and day every time.  When she rests during the day, he sits in the same room reading in case she needs him. He cooks for her, washes up afterwards, does all the laundry, helps her bath, dress, whatever is needed, he does it and with such patience and kindness that he puts me to shame.  He is such a role model of love and perseverance that I had to share this song of love dedicated to him over 62 years ago.
PS. Mom just came through surgery after chemo was used to reduce the tumor and the doctor feels she got it all!  An amazing example of God’s love and fulfillment of prayer.  I’ll miss them when they move back home but I know that she will be in good hands with my Dad, the super husband every man should strive to be.

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Take Care of Myself? LOL

I read an interesting article on the Caregiver Space this week which has led me to think a lot of taking care of myself and why I don’t.  The article was called “6 Reasons Why Caregivers Don’t Self-Care (the way you’re telling us to)”   It got right to the heart of why; at least for that person.  Of course, some of her reasons were not the same as some of the reasons I have but many were very similar.
Here’s my version of her same theme:
1.  Take a walk – As I’ve mentioned before, I work from home and one day a week (sometimes more) I go into the office.  On those days I usually have a lot of meetings to attend.  My office is about eight blocks from where those meetings usually occur so I walk there although I could wait on a transportation service that comes around regularly. I walk though because I never get outside except to walk the short distance to my mail box.  I enjoy the outdoors but if I go outside for any length of time I have to set up the baby monitor and constantly clean up to go back into the house to address what Lynn needs.  Therefore, getting into a major “dirty” project is not something I do often. Furthermore, I cannot walk any distance from my house since the baby monitor does not project that far.  If I want to go anywhere for more than 30 minutes, the concern is that he will need to be cathed and will have an accident if I can’t get to him promptly.  Therefore, I do not go for walks.
2.  Use a treadmill – I actually have a very nice treadmill in one of our rooms that Lynn used before his balance got bad.   I had every intention to start using it again because I realized as I walked up the hill to those meetings I mentioned above, I become quite winded.  So, I had my stepson clear me a path to the treadmill…I have not gotten on it yet.  What I’ve realized is that to use the treadmill requires prep time and cool down time plus dedicated time to walk.  Timing the ability to do that requires coordination of activities with Lynn’s bladder and other needs.  Also, I work seven days a week so that I can keep up with my office work since I have so many interruptions during the week.  Therefore, if I’m not doing necessary house things like cooking and cleaning, or necessary Lynn things, I’m working and I truly do not have a spare 30 minutes in there anywhere.
3.  Soak a hot bath – When you have so many things to be done in a short amount of time, relaxing in a hot bath does not seem to be a priority.  For me, I jump in the shower, maybe take a few extra seconds to enjoy the heat on my muscles but then it’s back out.  I shower with the door to the bathroom open so I can hear him if he needs something right away.  My first stop (often before fully dry) is to check on him and often he’s calling for attention before I can do that.
4.  Hire help – yeah right.  Most people assume caregiver professional help is paid by insurance.  Wrong!  It’s not covered by insurance and it’s not cheap.  Plus you have to orient whomever comes over to his “routine” and you need to be vigilant that they are performing their duties as specified.  I would love to have paid help though but I already have so much debt related to buying the things he needs to feel better that I have no extra income.
5. Help from family and friends – we are blessed to have many kind and loving family and friends who help us out.  I truly don’t know what I would do without them.  One such angel just left my house after cutting the grass, weed-eating, and cleaning up leaves. All this he does without being asked.  He just shows up, does the work, and leaves without a word.  He didn’t even come into the house today because he might have shingles and didn’t want to expose us.  See what an angel he is? We have many such angels in our lives and their love and assistance helps me to manage all the chores and care needs I have that take me away from being available to Lynn.  I truly don’t know how those of you who do not have this support make it.
6. Get plenty of sleep – LOL.  How I wish that was possible.  On average, I get 5-6 hours a night–occasionally less (usually when I have to go into work); rarely more (maybe on a weekend if we don’t have someone coming over to help us with something).  I usually get to bed between 2-3 a.m.  I get up most days between 8 and 9; however, I usually am up twice during the night with caregiver duties so I’m always sleepy; always tired.  I survive on caffeine – either pill form or coffee.  I can’t always drink the amount of coffee I need due to stomach irritation but I’ve found caffeine pills help. I try to limit using them until I have to drive but I am honestly dangerous on the road much of the time without them.  I get so sleepy driving that I fear I’ll have an accident.  There are times every day around 4 pm. that I truly cannot keep my eyes open and they shut on their own.  If I’m driving home from work at that time, after 10 minutes on the road, I catch myself nodding off so I have to stop for coffee or something to eat if I don’t use the pills.  Yeah, I know I shouldn’t but when you weigh car accident vs. effects of caffeine over time; caffeine wins.
7.  Keep your weight under control – See #6.  I eat to stay awake; to give me the energy to go on.  I eat whatever I can eat cold and fast.  I don’t have time to cook for myself because my cooking time is devoted to making Lynn’s special meals. If I eat his stuff, I have to spend more time in the kitchen which means I have less time for my job and need to work more on the weekend to make up the time.  So I eat already prepared things.  Most are high calories unfortunately.  Okay, I admit, that’s also an excuse.  It’s one of the ways I pamper myself and I admit I use it as self-indulgence.  So…come on stretch pants.
Since I’ve started writing this blog, I’ve been interrupted three times and been pulled away at least 15-30 minutes each time.  That’s why I can’t do anything for myself.  That’s my real “why”.  Self-care takes times and time is not something a caregiver has.  So I do a little snacking, listen to an audiobook, and catch a 5 minute snooze to keep going and call that self-care, Donna style.

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National Family Caregivers Month – Background

In 1994, the National Family Caregivers Association began promoting the celebration of family caregivers during the week of Thanksgiving. President Clinton signed the first presidential proclamation in 1997 and every president since — Democrat and Republican alike — has issued an annual proclamation appreciating family caregivers. As interest grew in family caregiving issues, National Family Caregivers Week became National Family Caregivers Month.
Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care.  Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.
NFCA coordinates National Family Caregivers Month as a time to thank, support, educate and empower family caregivers.  Celebrating Family Caregivers during NFC month enables all of us to:

  • Raise awareness of family caregiver issues
  • Celebrate the efforts of family caregivers
  • Educate family caregivers about self-identification
  • Increase support for family caregivers

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”
 President Barack Obama, NFC Month Proclamation 2009

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