The impact of epilepsy on Robert is that he has declined to
the point of needing assistance with his daily living tasks. He is incontinent but isn’t aware (or
concerned) if his pants get wet. He’s
told me before, “they’ll be dry by morning.”
Um, he needs a little . . . guidance when it comes to
staying clean and taking care of himself.
 |
| Richard and I make a pretty good team |
Richard and I are that “guidance.” We make sure he gets his medication on time,
wears clean clothes, eats balanced meals (with a few treats thrown in).
We are responsible for Robert and whether Richard’s back
pain flares up or I have a busy week at work, the responsibilities stay the
same. When Richard and I are not at the top of our game, we have to make
adjustments to our regular schedule.
As it happens, this has been a horrendous week at work and I
now have a cold. It isn’t anything
serious but it has me down enough to wish I could come home from work and
snuggle under the covers with the dogs.
I would love to not make any decisions or have any responsibilities.
Instead, we have to make adjustments. Obviously, Robert
still needs care but there are short-cuts we can take without jeopardizing his
health or safety or happiness.
It’s okay if we get Robert ready for bed a little earlier
than normal. After all, he is perfectly
happy watching his shows and working on his word search. I know he is safe in his bed and can monitor
his seizures by watching him on the camera we set up.
Our Friday night dinner out might need to be turned into Friday
night take-out.
If there is a more long-term issue of Richard or I being
sick, then we have a back-up plan. We have a wonderful facility that we use for
respite care and we would be able to take Robert there if an emergency arose. (Richard’s hospitalization last year comes to
mind – if he had to stay longer than a few days I would have used the facility
for a short-term stay for Robert.)
Every now and then the caregiver will get sick and adjustments
will need to be made. It is always good
to prepare for these situations and have a back-up plan in place before an
actual emergency.
As far as caring for the mental health of the caregiver, I
highly recommend the caregiving support website www.CareGiving.com. It is a terrific community of other
caregivers and since it is an online community it is accessible at all
times.
Even when you just want to snuggle under the covers!
2 comments:
As a single parent I have sometimes struggled with caring for my daughters especially in earlier days when they were babies and toddlers and I was in a wheelchair myself or on the long recovery to walking again. It amazes me how well you manage to cope with a fully grown adult in his variety of guises from helpless through Robert being active and a total flirt.
I do learn patience and gain inspiration from every update you make which makes me rethink my ability to help others and my belief that I can manage my own situation. You also inspire me to start writing in my own name again. Keep up the great work
Laine
http://www/thoughtsfromabroad.net
Laine, I would love to see you writing again. You are an inspiration to me with your own struggles and so many things you have had to overcome. You have a powerful voice and I encourage you to share it! Love!
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