How Can I Help?

I get a lot of offers to help; some sincere and others just being polite. What I have found is that people want to help but they don’t know how and realistically, many have their own problems and challenges so they can’t help in a way that involves time or money.  While I really could use the help, I don’t want to put anyone out so I usually don’t ask BUT, if you ask me if you can do something for us, I may very well say, “yes.” Here are some ways you can help.

Inexpensive and limited time commitment:
continue reading at:

How Can I Help? Read More »

Can You Come Here a Minute?

“Can you come here a minute?” I hear that every 30-60 minutes all day long and you know what?  It’s never a minute. When I enter his room to find out what he needs, I’m typically gone for 15-30 minutes.
Being the chief cook, laundress, banker, shopper, mechanic, fixer-upper, and caregiver; as well as spouse, Mom, grandma, and employee, my days are filled to overflowing. The only time I sit down is to eat and when I do, I’m usually composing a shopping list, taking care of bills, or completing assignments for work OR I’m feeding Lynn as I take a few bites as well. Most of my days are 19 straight hours of go, go, go; so in order to manage my life I have to be relatively organized.
“Organized?” you say as you look around my house. Well, my world might not look organized to you but trust me, it is. I have a hybrid concept of “everything in its place.” Its “place” is somewhere in a particular room, not a specific drawer, (well, sometimes a specific drawer if I use it fairly often) and is usually found somewhere to the “left as you enter the room.” For example, all medical equipment is in the spare bedroom, as is, the urinary catheter supplies. The equipment is located wherever you can get it to fit. The monthly catheter supplies are all on a shelf in that room and the daily supplies are in a plastic shelving unit in the bedroom. One is out of the way and the other is within arm’s reach of where I need it most. Supplies are stored according to purpose, frequency of use and size. I have cheap plastic storage bins stacked around that can be moved to where I need them and which allow me to have “activities” grouped together. Care supplies are organized; nothing else in the room is.
Clothes, for example, are not a priority for me. I want them clean, comfortable, and durable. I usually wear scrubs and they usually look well worn. I throw them in the hamper or washing machine, wait till I’m pulling out Lynn’s last pair of shorts to wear, and then and only then, do I do laundry. When the clothes are clean and dry, I hang them in the utility room next to the dryer for convenience or dump them into a laundry basket where they will probably stay until I need to use them again. My style of being organized – frequently used clothing right where I can walk by and grab them as I need them.
I wish I could be as organized with my schedule….but I can’t.
The key to my survival is flexibility and the ability to break tasks into smaller components quickly so that I can multitask. I keep in mind what is coming up next at all times. If I need to go to the back room to assist Lynn in answering the call of nature, I grab supplies or clean laundry to take with me. I ask Lynn to always tell me everything he needs when I first enter a room so I can plan my “process” for that particular visit. For example, if he needs me to make tea, cath him, adjust his position, and give him nose spray, I would put the water on to heat, fix the tea while it’s cooking, cath him, then adjust him so the process of cathing him would not disrupt the positioning needed, finish the tea then give him nose spray after he drank some hot tea. In my mind, I figure out how long something will take, what can be done in the meantime and what will be the impact on any one request by the sum and influence of all other requests. Through that analysis, I come up with a “routine.” Once I repeat that routine a few hundred times, it’s an automatic response. My goal=save time and energy.
That process works UNTIL he changes his mind in the middle of a routine and messes up the entire schedule. How often does that happen? continue reading at:

Can You Come Here a Minute? Read More »

The Many Faces of Care

As a caregiver, I understand that my role involves providing a lot of physical care.  For any caregiver, how much care is provided depends a lot on how significant are the limitations of the one for whom you’re caring. For me, the physical demands are many because Lynn’s physical limitations are many. But, in addition to providing his physical care, I also need to provide mental, emotional, spiritual, and social care.  The physical care is pretty consistent in that I know in advance what I’m going to need to do for him and how to do it; however those other “care” needs are more unpredictable.
Mental and Emotional Care
We’re pretty lucky in that so far Lynn’s MS has not affected him mentally in any significant way.  He has had periods of depression and is in fact, on an anti-depressant to address that problem.  When he first became depressed, I didn’t catch on right away to what was happening.  I expected him to be down; after all, he had gone from being a very physically active independent person to someone totally dependent on others to provide for his every need. He had a right to feel frustrated, angry, discouraged, afraid, sad, and any number of other emotions.  Plus, he just felt bad. Since he had so many legitimate emotions that were healthy and normal for anyone going through what he had to endure, I didn’t catch on to the fact that his level of depression was growing deeper and deeper. When I did finally catch on was when he started making statements such as, “Why bother (to exercise); it’s pointless anyway.”  “What am I any good for anyway?  All I am is a burden.” He also stopped eating, stopped being interested in any decision making and seemed totally disengage from his life. Suddenly, I had that “ah, ha” moment and got in touch with his healthcare provider to get medication to help.  Fortunately, it did.  For the most part now, he manages depression pretty well and doesn’t go into long periods of being down, but it’s something I look for all the time.
In addition to depression, he has a little forgetfulness but he’s lucky; he doesn’t really experience the memory issues that many with MS battle every day.  He occasionally needs a reminder but most of the time the memories come back with a little prompting.
Spiritual Care
I believe that we are spiritual beings.  I know that, for Lynn and me, we count a lot on God for meetings our needs.  We look to our Lord and Savior to carry us through a crisis and to look out for our needs.  Our spiritual side is what keeps us going, what provides our comfort, and is often what restores our hope. Therefore, it is essential that I factor in that he needs spiritual care as well as physical care.  When there are no viruses or other contagious bugs in the air, he goes to church; however, during the winter months, that’s too risky…too much flu and other nasty bugs to be shared.  Therefore, it takes more effort to maintain the spiritual side of life.  Lynn has CDs that he listens to which bring God’s word to his mind and helps him stay connected to his faith.  In addition, he listens on line to the actual sermon presented at our church.  We also have many discussions about our interpretations of God’s word and how Jesus’ teachings affect our lives. It’s a very important part of his care to help him meet his spiritual needs and is why I feel he has been able to avoid greater bouts of depression.
Continue reading at:

The Many Faces of Care Read More »

Has Anyone Seen My Magic Wand?

When you are a caregiver, you learn to multitask and plan ahead… or you don’t survive. Once you get good at doing these two things, then others, especially the one you’re caring for, seem to think that you can do anything…like magic.
It mystifies me that I can tell Lynn what’s on my “to do” list and thirty minutes later, he thinks it’s done.  He has no concept of how much time it takes me to accomplish a task because he has no idea of what happens when I go to do a task.
Let me give you an example which will be very familiar to many of you:  going to the kitchen to get a snack for him after finishing his bath. It goes something like this…
Lynn:  “Donna, can you get me an apple and some hot tea?”
Donna:  “Sure, in just a minute.”
I  prepare to leave the bedroom but before I do, Lynn wants just a quick adjustment to his clothes, then he needs to scoot back in his chair, just a few squirts of nasal saline (more like 15 per nostril), then another adjustment, change the channel on the TV, and close the door to his room to keep the heat in. Leaving the room, I gather the dirty clothes discarded after the shower and the empty tea mug.  Going down the hall, I realize he’s almost out of shorts so I stop to get the dirty clothes from the hamper, dump them and the other clothes in my arm in the washing machine and start a load of laundry.  I prepare the tea and put it in the microwave to heat up, wash the apple and slice it into pieces he can hold on his own, rinse out the dishes in the sink, load the dishwasher and start it washing. Meanwhile the tea is ready, I transfer it to the mug he can hold, add favoring, put the apple in a small plastic bowl and take his snack back to him.  As I’m heading down the hall he’s saying, “Donna, did you forget my tea?”
Now, to his way of thinking, I only got his snack, but in reality I was evaluating future needs, planning and putting that plan into action to prevent problems later on so that miraculously, he does not run out of his favorite shorts and socks and he always has access to the dishes he can manage on his own.  Just like magic.
What brought magic to mind was that he got a call today from a relative who wanted to stop by and see him on Sunday.  I had taken him the phone so I knew he had talked to someone.  When I was in the room later, I asked him who called and what the call was about.  He told me it was someone he rarely sees and then casually mentioned they were coming over on Sunday.  I stopped dead in my tracks, “Sunday?  Are you kidding?  What are you thinking?” (yes I was a little put out).  The rest of the story…Sunday, we have tickets to go to Virginia Beach to see a Rush concert.  It’s a two-hour drive down there and we plan to leave at least three hours before the concert.
Lynn’s response:  “What’s the problem?”
Me:  “The concert is Sunday.”
Lynn:  “So?  They’re coming at noon and we don’t have to leave before four.  We have plenty of time.”
Me:  “They rarely see you. They aren’t likely to just come in and immediately leave.”
Lynn: “They probably won’t stay more than an hour.  That gives us plenty of time.”
And that’s the statement that got to me.  “That gives us plenty of time.”  For him, going to the concert just means driving his wheelchair out to the van and climbing aboard.  For me, it means, getting us both dressed.  Preparing him food to take with us, packing layers of clothes because the temperatures are supposed to drop. Packing fluids, medications for spasticity, and other meds “in case of;” thinking through what all he will need for comfort; figuring out how to get everything packed in as small a bag as possible. Getting the van gassed and ready to go, getting directions, making sure I have the tickets, spare money for snacks, emergency supplies in case we break down; and since we’ll be getting back late, planning for what we will need immediately upon our return so we can get to bed as soon as possible.
I have a load of things to do before we go but for him, it’s just a matter of going and all his needs are met. It’s like magic. .. only it’s not.  It takes a lot of hard work and planning.
As a woman, doing many things at one time is natural.  I’m always doing more than one thing at a time; but it’s different for men.  My Sunday school class read a book called, “Men are waffles; Women are spaghetti.”  It really opened my eyes to our differences.  Men do one thing at a time (except if at work. For some reason, at work they can multitask.  Go figure) While they do that one thing, that’s all they do.  Their thoughts and actions stay in that little block of that section of the waffle and they don’t think about the next task till the first one is over. Women, on the other hand, are like spaghetti.  Everything touches everything else and the tasks overlap, clump together, weave over and under and are blanketed in sauce.  That’s just the way it is for us. 
Actually, I think caregivers, men or women, are like spaghetti.  Everything touching everything else;all things connected.  It just has to be that way to survive and to be able to get done all you have to do.
….Oh, yeah, that and the magic wand we’re all given when we take on the caregiver role.

Has Anyone Seen My Magic Wand? Read More »


When I was trying to decide what to write about this week, I was having a hard time coming up with something unique.  I’ve touched on many of the hardships and challenges associated with being a caregiver but as I look out the window at all the new growth for spring, I am also thinking of all the benefits.
Some of the challenges we ensure also have benefits associated with them.  I realized early in my life of caregiving, actually when I was acting as both a Mom and caregiver for my child who had a chronic health condition too, that God prepares us for the challenges ahead without our realizing it.  It seems in looking back that each difficult road I’ve traveled helped prepare me for something ahead that would have been more difficult if not for the previous experience.  For myself, I find that God led me in a very unique way to prepare for where I need to be now. 
I originally trained to be a nurse.  My first nursing position was evening shift and I worked “the house” training other nurses in new procedures and helping out in all crisis events.  I learned a lot of skills, both nursing and interpersonal.  When my first child was born, my husband at that time wasn’t coping very well with being the one responsible for her care while I worked so I sought a day shift position.  I became trained in Infection Control, Employee Health, and eventually was the Director of Education and Training.  From there, I was asked to train in Human Resources so I could take over that department (this was obviously a small hospital).  I eventually stayed in the area of Human Resources but moved to another hospital and focused on Employee Relations and development of policies.  My role was primarily advisory in nature (over the phone or email consultations) and I learned the role technology could play in communication. 
As you can see, my nursing and HR training, as well as experience in use of technology put me in a position to be able to work from home so that I could provide care for my husband.  I can now consult with contacts by phone or email while I’m simultaneously assisting Lynn.  My job with my company is no longer 8:30 a.m. – 6:00 p.m. but is now 24/7 (24 hours/day seven days a week).  By working from home I access my emails and continue to work on projects between the times Lynn needs my assistance.  I’m a 24/7 employee and a 24/7 caregiver.  When you speak of multitasking…I’m the Queen!
I can be directing the action plan for a crisis while I am cooking spinach for Lynn’s diet and giving him his breakfast, all at the same time.  In fact, I would say it’s pretty rare that I focus on one thing at a time.  I expect that is true for all caregivers.  Multitasking is a talent each of us has to develop in order to get everything done that we need to do. We each need more than 24-hours in a day but God in his wisdom realized that if he gave us any more, we would never get any rest!  I know if I had more time, I would just fill it up with more tasks.
Though multitasking is a requirement for being a caregiver, it’s also a blessing we have been provided.  It allows us to manage our lives and the lives of those to whom we provide care.  It makes us better employees and more talented workers.  We develop greater skill and stronger personalities.  The only down side is we tend to try to do too much at any one time and we forget to take time for ourselves.
I guess every challenge has a benefit if we seek it.  Sometimes we just have to look a little deeper to find it.

Multitasking Read More »