Waiting for the Next Shoe to Drop

Caregivers often experience feelings of depression, being overwhelmed and loneliness.

I was talking to a fellow caregiver this week about an event that occurred to him and he made the comment, “Yeah, I’m just waiting for the next shoe to drop.” That comment really struck home. I confess; I’m like that most of the time. Lynn, my husband and the person I provide care to, accuses me of being pessimistic but honestly, if I don’t expect the worst, then I won’t be prepared if it occurs. It’s a matter of self-preservation from my perspective. I do admit though that I can take it too far.
Lynn has gotten a double dose of baclofen in his pump to reduce the number of spasms. Baclofen is a muscle relaxer. Not only does it relax muscles, it makes him sleepy. Therefore, he sleeps h-o-u-r-s at a time, wakes up to eat, and then goes to sleep again.
My, “what if,” talk in my head goes like this…
He sure is sleeping a lot. Shouldn’t he have adjusted to the dose by now? It’s been a month. Maybe it’s something more. Just because he has more baclofen on board doesn’t mean that’s what is causing his sleepiness. I think I should check to make sure he does not have a urinary tract infection that is not showing up yet. I wonder if his CO2 level is too high? With his sleep apnea, he might be retaining carbon dioxide which would make him sleepy. I’ll have to make sure he’s oriented when he wakes up. What if it’s something new?And on and on and on….
Continue reading at

Waiting for the Next Shoe to Drop Read More »

Home Alone

If I’m going to be away from home for any length of time, I try to arrange for someone to stay with Lynn for most of the time that I am away. I sometimes have to leave before the person staying with him can get there or they have to leave before I can get back. That was the case this week. I had to go into work. The person staying with Lynn was coming at 11:00 and leaving at 2 so I knew he would be home alone for at least an hour and a half since the meeting I was attending ended at 2.

When I left at 11, my “back up” was not here yet. Therefore, rather than just turning over his care to someone, I had to plan for “what if.”  What if she has gotten stuck and can’t make it? Just in case that might have happened, I organize things to be “in reach,” make sure he has water and his urine drainage bag is empty. I have to leave the front door unlocked so the person can get in, make sure everything is turned off or on for safety and then head out to work with instructions to “call if she doesn’t show up.” I didn’t get a call so I assumed all was well.

Once I’m at work, I’m focused there. Much going on; much to do; no time to check on Lynn. As often happens, everything takes longer than anticipated. The clock is now running beyond the time he and I had planned that I might be home. I finally leave work but have to make three stops on my way home and my drive home is an hour long. I send him a text to tell him when to anticipate I will be there and to say I still need to go back out to the grocery store after I get home. I assure him I will run home first, get him liquids, something to eat if he’s hungry, empty his urinary bag and get him settled before I run out again to the store. By the time I get there, he has been home alone for three hours. That’s the longest I’ve ever had to leave him alone.

Every time I leave the house I have to make a calculated guess on how much risk I will take with his safety and comfort if I have to leave him alone. In many ways, leaving Lynn home alone is like leaving a toddler at home (except a toddler can get into more trouble). When no one is around, Lynn cannot access anything that is not within his immediate reach. If he drops something, it’s as good as gone. He often does not have the strength or dexterity to lift or move items left for him to use; we never know how his fatigue and/or weakness may limit his strength. Therefore, if I’m leaving the house, I have to:

  • Leave a thermos of hot tea and one of cold water within reach. He needs both because sometimes he is very hot and needs to cool off or just the opposite; very cold and needs to warm up.
  • Have a snack available if I’m going to be gone a long time (must be able to be eaten with fingers; he can’t hold utensils).
  • Leave an empty catheter bag.
  • Arrange for entertainment and leave a charged cell phone nearby.
  • Make sure he’s comfortable and he has access to his medical alert necklace.

Continue reading at:

Home Alone Read More »

Planning for the Future with Our Children

Sometimes I forget the impact our life has on the rest of our family. Today, that impact is more evident as I wait for our three children and their spouses to come over to “talk about the future.”   I have been having just such a conversation with my brothers and parents but hadn’t really thought much about needing to have that conversation with my own children.  However, they have requested an opportunity to discuss the “what ifs” that can occur either as a result of my disability or my death.
As a result of secondary progressive MS, Lynn can no longer provide any self-care.  He relies on me for everything from feeding to assistance with going to the bathroom.  It’s a lot of work but we have a routine that works for us pretty well. However, what if I suddenly could not provide that care? What would happen to Lynn?  And what if the “what if” was not my death but my disability and not only would total care be needed for Lynn but also for me?  The obvious answer to that is that our children would have to figure out what to do with us.  Therefore, I understand and appreciate their desire to have this conversation with us today.
All three of our children are in their late twenties, early thirties. Two of them have just been married two years or less and the other one has been married longer but has a young child with special needs.  All are in those early years of learning to make it on their own and struggling to do so in today’s economy.  I also know that each of them would do anything for us.  They are very good about helping out and they want the very best for us, but realistically, if something happened to me so that I could no longer care for Lynn, there would certainly be an impact on them as well as me.
With any illness or injury there are mounting bills to pay.  If we were both dead and had outstanding debt that was not paid by life insurance, the bills would go to our heirs. That doesn’t seem fair but if I’m not mistaken, that’s how it is. Therefore, to protect my family, I have bought supplemental life insurance that should be enough between what my company provides and the additional I carry, to pay my last expenses and provide the ability to care for Lynn.  I can keep this insurance as long as I’m employed but I’m also 57 years old now so I may only have that option for another 10 years, if that long.  Hopefully, I’ll be able to afford to carry that as independent coverage afterwards though; so financially, I think they will be okay.
Providing Care
Money is one thing but who is going to be responsible for taking us in?  None of them have houses that would allow Lynn to move in along with all his equipment and supplies.  Therefore, they would either have to move into our house or move Lynn into an assistive living arrangement (or more likely a long term care facility).  I know that none of them want to do that but sometimes there is no choice in the matter.  I have some Long Term Care for me to help pay for a place for me to go but Lynn was in the process of being diagnosed with MS when that option became available with my company so he was turned down for coverage.  Would they be able to afford a long term care option or would someone have to quit their job to stay home to care for him? And, if that happened, could they afford for one of them not to work?
Continue reading at:

Planning for the Future with Our Children Read More »

Preparing for the Week Ahead

Always be Prepared.  That was the Scout motto when I was a kid and one I’ve taken to heart for survival purposes now that I’m a caregiver. The need to always have a “plan B” keeps me on my toes and planning ahead for the “just in case” life I now live.

Today is Saturday.  So far this morning, I’ve spent the majority of my time cooking large pots of vegetables.  I try to keep several containers of all the essential foods Lynn has to eat each week in the freezer.  By cooking in large quantities, I can work up to the last minute and pull a meal together out of the refrigerator or freezer without needing too much lead time. In fact, I have a freezer in the garage devoted to his food.  I usually cook about 15-20 servings of something at a time and put them in individual sized plastic containers. I then slap on a label of what’s in it and when I cooked it and off it goes to the freezer to be stacked with the others of its kind.  I do the same with my meats. I fill my oven with the meat of choice then create 3-4 ounce servings for use at a later time.  Then for the meal, I pull containers, dump them on a plate, cover in tin foil and wa la, I have a meal to throw into the oven to slowly heat till I’m ready to serve.
I’ve got a similar process for clothing.  Lynn has certain clothing that he prefers to wear. After discovering what styles and fabrics don’t annoy him due to binding here or a twist there, I buy lots of them to have on hand so I only have to wash clothes twice a week.  He doesn’t have much variety but he doesn’t seem bothered by that.  He’s into comfort and I’m into ease of care and together, it works out well for us both.  Therefore, I have a drawer full of gray toe socks (individual warmth for each toe), button V neck ¾ length sleeve baseball-style T-shirts, and stretch base-ball slider shorts that have slight padding on each side which protects his skin as he moves in the wheelchair.  Each part of his wardrobe is specifically designed to accommodate his special needs.
For short trips to the doctor (which is about the only place we go anymore), I have a tote bag that comes along.  Much like the diaper bag Moms carry for their young, I have a bag full of necessities.  I carry enough catheter kits and supplies for the number of times I expect he will need to have his bladder emptied while we are gone. But I also carry two extra of everything, just in case, AND an indwelling catheter insertion kit and catheter in case the car breaks down and I have to use up my spare intermittent catheter supplies. Besides catheter supplies, I carry a spare change of clothes, wipes, and an air pump in case the air cushion he sits on springs a leak. (For longer trip, I actually take an extra air cushion with me.)
Continue reading at:

Preparing for the Week Ahead Read More »

Planning, Time, and Flexibility: Essential Ingredients for the Holidays

Christmas is a wonderful time of year; full of fun, excitement, and family gatherings.  For weeks beforehand, I spend time decorating, planning, anticipating the good times and envisioning the perfect holiday.  Like so many dreams, reality is rarely the picture perfect vision that I have in my head.  That is particularly true now that MS is part of our lives.
Lynn and I have three big family get-togethers at Christmas—my parents and siblings come the week before Christmas, our kids come Christmas Eve, and his family comes Christmas day.  Each is a wonderful time of creating memories and eating way too much food.  Even though these times are lots of fun, they are also very challenging.
Holiday celebrations are always held at our house since Lynn’s wheelchair cannot enter anyone else’s house in the family. Even though we often order pizza or one of the other family members will do the cooking, there is still a lot of preparation required to host a gathering. Everything takes more planning, more time, and great flexibility if you’re hosting the party at your house.  There’s the need to buy and prepare some, if not all, of the food, clean the house, and decorate (or make everything look festive).  When everyone gets there, you help make your guests comfortable, assist those who need to heat up items or put out food to do so,  make sure everyone has what they need to eat the feast (the fun part), clean up afterwards and put everything back into its original place.  Even if you and your family members are healthy, it’s tiring to host a party at your own house.  If someone in your family is not healthy, then it’s exhausting.
Read more at:

Planning, Time, and Flexibility: Essential Ingredients for the Holidays Read More »

The Best Laid Plans…Oh, Forget It

By far, one of the greatest frustrations I have as a caregiver is that I have no control over what I want to do and when I want to do it. I am sitting here so frustrated at this moment that I can hardly think straight.
Today is July 4, my day off.  However, I actually planned to work today to catch up on some projects at work that I REALLY need to do.  I had my plans all straight but here it is 4 pm and I have not done anything I planned to do.  I could cry.
I took some “me” time last night from midnight to 2 a.m. to watch a movie I rented from Blockbluster (been trying for a week to even be able to put it in the DVD player).  BIG MISTAKE.  It never pays to take “me” time.  I always regret it later.  So anyway, I took the time to watch a movie; afterwards waking Lynn for his dinner (yeah, I know we have weird schedules), feeding him, doing his night routine and then mine, so I got to bed at 3:30 a.m.  Up again at 5, 7, and 9 (Lynn thinking it was 10.  He seems to think he’s my personal alarm clock and heaven forbid I just be allowed to sleep till I wake up on a day off!) to cath him. I go back to bed to sleep till 10 so I get 5 3/4 hours of sleep (15 min per cath event).  Getting up at 10, of course, makes me  late getting started but I figure, we have nothing special we have to do today, I’ll easily get started by 1 with what I need to do.
Then the day precedes to be shot to h___.  I do the morning prep work while he does his vocal exercises.  I take him to the bathroom and it doesn’t go as expected.  He has to use suppositories due to limited muscle strength and it didn’t “come back” like it should.  That means disaster.  Now we’re waiting in the bathroom and he decides he needs to pee (why couldn’t he have gone before we go the bathroom–yeah that doesn’t make sense to you unless you know that the cath supplies are in the bedroom not the bathroom). I finish that, get him cleaned up and then he announces he wants to sit in his manual wheelchair (he’s trying to toughen up his butt in hopes he can tolerate the cushion in that chair and maybe go to church again one day).  That means rearranging various pieces of equipment to get the manual chair out of of that room and putting him on it instead of the power chair.  That done, we go to the kitchen for his morning pills.
In the kitchen he takes his meds and decides he wants me to put weights on his wrist to work his arms.  That done, I turn to begin preparing my meal….no wait…. he needs me to help him with his arm exercises.  I do that, then take off the weights, and begin to get ready to take him back to his room. No wait….”I want to do pull downs in the weight room,” he announces.
I again go to the weight room (which I had just rearranged to get the manual wheelchair out), rearrange it again to get it ready for him and back I go to the kitchen to get him.  I roll him to the weight room and help him do the pull-down work out and then take him to the bedroom to set up the massager for his feet. I then go to start my breakfast (two hours after I get up) and eat.  While eating I prepare mushrooms for roasting, and cook spinach for his diet; also make his soup for lunch.  As I finish, I hear, “Sweetie, come back. I need to go to the bathroom again.”  Large GROAN.
With sagging heart, I go and take him back to the bathroom (remember, I only do manual lifts so I’m physically lifting him in and out of these wheelchairs and onto the toilet).  He “goes” and then says he might as well lie down awhile so I roll him to his bed.  “Oh, yeah, I want to do  push-ups.” Seriously???
I get out the PVC work-out pipes that I insert under his mattress (out of the weight room, of course) and help him do push-ups.  Then I settle him down for a nap (put his pants on him again, cath him, put his boots on him so his feet don’t cramp, get the TV set for viewing, wash his face, and straighten up the room.)
While he’s down for a nap, I just finish cooking what I put on while eating, washing the dishes and doing a load of laundry when I hear, “I’m ready to get up.”  I get him re-dressed, hook him up to his peddlar,  hear “I’m hungry,” so I feed him breakfast and as I finish feeding him, hear, “I need to go back to the bathroom again.” Major sigh…..
Back to the bathroom, back to bed, redress, get him back up, reconnect him to his peddlar, make him tea, cath again, and do a few adjustments, and now it’s 4 pm.  Six hours after I get up, I’m finally finished with his morning activities and I’m ready to “start” my day.
I give up! I think I’ll just take the take “off.”  After all, it will be time to cath him again in thirty minutes (true enough, he called to be cathed again at precisely 4:36) and he’ll want a snack 30 minutes after than, and then more tea, followed by another cath…..
So much for my plans.
I know none of the above was unnecessary for his comfort and well-being.  I know that he hates the fact that he had to disrupt my day so much (and I’m sure he hated hearing my complaining about it even more).  But that doesn’t change the fact that it’s depressing to have so little control over my plans. I’m tired of being unable to plan anything and I’m tired of disappointments but most of all I’m tired of the fact that I haven’t found a way to not let it get to me.
I really wish it didn’t. I wish I could laugh it off and just roll with the punches but that “funny bone” just ain’t working right now.  Could be lack of sleep; could be the fact my arthritis is really bugging me; or it could be….I’m just feeling sorry for myself and making it all about me.  It’s not all about me and it’s not all about him.  It’s all about us.  We’re in this together and I need to keep my perspective on it.  In the scheme of my life right now, not being able to work on writing policies for my job is not a big deal. Being able to make him comfortable and take care of his needs IS a big deal. I just have to refocus and get my perspectives right.
Hmmmm….I think I might just have the thing to do that…I think I’ll go make a slushy out of watermelon….yeah, that will make it all better.
Happy 4th of July.

The Best Laid Plans…Oh, Forget It 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 »

Live in the Moment

One of the greatest challenges of living with MS is how unpredictable each moment of your life becomes.  I’ve shared that frustration before but I keep coming back to it because it’s such a constant struggle.  Adapting to it not only means being prepared for the unexpected and being flexible but also being prepared to accept disappointments and to let go of planning and any sense of control.
This week has been that way.  We found out early in the week that Lynn was a finalist in the National Indie Excellence Book Award contest for his book, Rising Tide.  This contest accepts thousands of entries throughout the year and he submitted Rising Tide in five categories.  He was a finalist in the category for adventure. Though his book is usually found in the “fantasy” section , his stories are primarily an adventure. This recognition was particularly gratifying because writing has become his “career,” his daily work, since his MS has progressed to the stage that he can no longer do anything physical.  He has a friend who comes in weekly to type for him and during the week he uses his slow, hunt and peck typing style to market his book to book clubs.  So the first part of the week was “up.”
…but that was Monday, the rest day before his Rebif shot.  The rest of the week he has felt tired and generally bad from the Rebif. Each morning he has the hope that today will be a good day but after exercising, eating breakfast, and his morning hygiene routine, he is wiped out for the day and his strength, stamina, and outlook steadily go downhill. 
Knowing that is how the week had gone, he optimistically made arrangements for a friend to come by this morning at 10 to repair the hole in the wall his wheelchair handles has made when he turns from the hallway into the bedroom (another challenge of being disabled, repairs that come due to equipment not suited to the size of the house or vise versa).  We got up at 7 (we have to have three hours at least to prepare for the day) so he would be ready by 10.  By 9 he had to call and cancel.  For the third Saturday in a room, he just didn’t have the energy to supervise a construction project. 
From Lynn’s perspective, he’s getting sick and tired of being sick and tired.  It’s very discouraging to think that it might take another three months before he adjusts to the Rebif enough that he does not feel lousy all the time…and then there’s the possibility he won’t adjust and it will always make him feel this way.  From my perspective, I know that my ability to plan for work, for vacation, for trips to the doctor, store, library, wherever… is always hampered by how he feels at any given moment.  For example, I just came back from the library where I picked up several books on tape (that’s how I read now since I no longer have time to sit down and actually ready anything).  In order to go to the library and back–a fifteen minute round trip at most–I had to make sure his bladder was empty, he had his liquids beside him, he was comfortable in his wheelchair, he was connected to his peddler, and his TV channel was set to where he wanted it to be; all before I could consider getting myself ready to walk out the door.  Walking back into the house, I yell, “I’m back,” and of course, I hear, “come here when you can.”  He needed another catheterization, his tea was not hot enough, and he was congested and needed nose spray. It’s always something… 
Lynn noticed a commercial this morning where a caregiver for a patient with prostate cancer was talking about her role as a caregiver.  He looked at me and said, “why does she call herself a caregiver?  She doesn’t do half of what you do everyday for me.”  I explained that each disease has its own unique caregiver needs and often the emotional support and managing the home and appointments for someone can also be very demanding even if you don’t have to physically lift, move, feed, bath, clothe, entertain, etc. 
I understand where he was coming from; however.  There are certainly degrees of caregiving just like degrees of being sick. I subscribe to a caregiver online magazine. I briefly look at articles to see what might be helpful.  I know each person’s situation is very challenging and it’s very difficult to be a long distance caregiver to manager situations for a parent or relative in another city or to live with someone who physically is functional but mentally is dysfunctional.   But caring for an MS patient is uniquely challenging, I think.  For most other conditions, you can get into a routine, know from day-to-day what needs to be done, and plan ahead.  For MS, that’s not true.  MS affects so many systems of the body and can be influenced by the weather, an illness, seasonal changes, the time of day, rest, diet, almost anything and whatever that effect may be will impact their bodies either in how they feel or how they function.  Therefore, as the caregiver/business manager/entertainment arranger/homemaker/etc,  you can’t effectively plan hour to hour sometimes much less day-to-day.  For me,that is perhaps the most challenging.
Next week will be our first virtual support group conference call.  If you, too, have similar challenges and would like a place to air your concerns, frustrations, triumphs, and hopes, please join us.  Contact me through Skype.  My ID is MScaregiverdonna.  Send me your contact information and I’ll add you to the conference call group.  I’ll give participants a call around 2 pm EST (give or take a few minutes in case I’m in the middle of a catheterization or something) on Saturday, June 16. I look forward to getting to know those of you who might want to participate.
Till next week….

Live in the Moment Read More »

What happens when the caregiver gets sick?

I picked up a magazine as I was waiting for Lynn to have an MRI last week and read an article entitled, “What happens if the caregiver gets sick?”  It caught my eye because I’ve allowed that question to surface just on the edge of my consciousness several times but each time it comes, I rationalize that I’ll handle it when the time comes and move on.  I realized,  however, when I read that article that I really need to do something other than just assume it will all be okay. 
The article commented on two different scenarios–what if the caregiver got sick and what if she died.  I had thought about what if I got sick…Lynn’s care would be taken over by our family members, right?  But then I got to thinking, “what if I was rushed to the hospital and didn’t have time to get everything set up for them in advance?  What then?”
Wow, that’s scary to think about.  Lynn could not go in the ambulance. Who would come stay with him?  There is no one close by but there are people whom he could call to come.  But if something happened to me, emotionally he would fall apart and I’m not sure he would know what to do.  Let’s assume I was incapacitated and could not communicate for a while.  No one knows what medications to give him when. My daughter is a nurse and could cath him but what if he needed more supplies, plus she works full time so she could not stay with him? The children are vaguely familiar with Home Health, but not who to call. Thinking about all that, I realized I really need to develop a plan in writing that communicates the what, when, who, where and how to make sure someone could take over in case I’m not around.
Then what if I died? Lynn says, if I die, he will too, just from depression and giving up and I think that might just be true for him.  He would be so depressed, he would become non-functional. Therefore, no only would he need care but he would be in no shape to help anyone figure out what he needed.
I realize I need to get our wills updated.  We had them wills when the children were little but we need to update that now that they are grown.  Lynn would not be able to figure out who to contact related to life insurance and forget him probating a will…he would not be capable.  So, we need to find a lawyer to re-write the will who will also agree to probate the will and get our affairs settled. I also need to write out all our information for our family to use. 
This stuff is not fun to think about but it’s really as important as what I do for him every day.  I put it off because I think I will have time tomorrow, or next week, or next month and besides I’m healthy.  But what has health got to do with it? Just this month, I have known of two deaths of healthy people my age or younger from unexpected events.  It happens and we do not always have time to prepare.
So my New Year’s resolution (a little late but at least I’m thinking of it now) is to get our affairs in order.  As with all things, it will be up to me to do this and even though it’s one more thing to handle, it’s something I really need to do.  I dread it though.  It’s going to take a lot of time and thought and I had just rather avoid doing anything I can put off that is not essential.  But this is..essential, I mean, and I have to make myself do this both for my own peace of mind and for Lynn’s safety.  Ugh….

What happens when the caregiver gets sick? Read More »