Emotional Effects

The emotional toll being a caregiver has on the individual

Sunday was a good day

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Seems like I’m always complaining so I want to take a minute to say what a good day we had on Sunday.  The weather was nice and Lynn was feeling pretty good for the third day in a row  (that in itself made it a good day).
A former co-worker of Lynn’s was coming over at noon to finish up some of the detail work on the device Lynn is having built that will allow his legs to move while he is resting.  (Lynn is really blessed that many of the guys he used to work with keep in touch and any one of them will help us out at the first hint that Lynn needs something.  He worked with a great group of guys.) The project this day was to cut out any unnecessary wood around the device so that it would be lighter for me to lift.  Not only is this gentleman a talented carpenter but he is also a great friend and Lynn really enjoyed the “virtual” carpenter experience through working with him.
While the two of them were working on the leg motion device, his wife kept me company while I took down Christmas decorations.  My son had already put many of them away in the attic on Friday from where I took the outdoor items down last week.  Since then I had been steadily working on taking down the rest.  Not long after getting started on Sunday, my brother and his wife called to say they were bringing me a Christmas tree they had bought for me for next year that already had lights on it so it would be easier for me to decorate.  Wasn’t that thoughtful of them? When they arrived, they stayed and helped me finish un-decorating and putting things back in the attic plus they shared a video they took the day before of a surprise presentation of a TV to our parents for their anniversary.
Sidebar:  I can no longer travel to my parents house due to caring for Lynn.  It’s just too difficult to go somewhere that is not handicap assessable and he’s just not up to long trips anyway, but I managed to be a part of the surprise anyway.  While my brothers sneaked to the house with their families and the TV, I kept my parents occupied on the phone so they would not expect anything.  It worked like a charm and was fun for us all.  My family is so thoughtful to find ways to include us with our limitations.  Just another way we are blessed.
Later after everyone had left, I had to work (office work) for a few hours.  Then my daughter and her husband brought over some medications for Lynn they had picked up for us  saving us a trip into town.  We had a nice visit, though short.  Afterwards, I gave Lynn a shower, we had dinner, and got to bed around 1:30 a.m. as usual. I was exhausted but I felt a real sense of accomplishment.  I’m someone who needs closure so taking down decorations and getting them all put away provided me with a lot of peace. Walking around I was filled with awe at how open and tidy it all looked (at least for a few minutes anyway).
Though receiving the Christmas tree as a gift was nice, the present of help from my bother and sister-in-law and Lynn’s coworker not to mention my daughter and son-in-laws help too, is a gift more precious than words can say. We are so truly blessed by so many people who care.  I just don’t know what we would do without them. 
So Sunday was a good day…a very good day.  Just wanted to share the good along with the trials. I hope you have your good days too.  They help to make the more difficult ones easier to handle.

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What happens when the caregiver gets sick?

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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….

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Whose life is he living?

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Last night I talked about the fact that I felt that I was not living my own life and that I was lost in the caregiving role.  Tonight I want to explore the other side–his side. 
Lynn sits up at night to sleep so that he will not wake me up to put him on his peddler when his legs get stiff.  He has given up sleeping in a soft bed until he can create a device that will keep his legs moving at night.  Therefore, when he wakes up he decides if he needs to be cathed or if it’s just stiffness that caused him to awaken. I’m sure he looks over at me sleeping comfortably in the bed under my covers and tries to delay waking me as long as possible.  Often when he does, I groan and ask, “are you sure?  I just cathed you at xxx.”  He is dependent on my getting up when he asks so that his bladder can be relieved.  His relief is contingent upon my cooperation and my timeline.
When morning comes, he lies down while I shower and eat breakfast.  Even if he is stiff and needs to move around, he has to wait until I am available to get him up.  His comfort is dependent on what I’m doing and when I can come meet his needs.  If he has an itch or gets cold and needs covers, he can call out for help, but he can’t take care of it himself unless I’m willing to be his hands.
When it’s time to get dressed, I pick out his clothes and dress him.  I often give him the choice of what to wear but putting it on so that it feels comfortable and fits right is up to me.  If the seams aren’t right or something is twisted and I don’t fix it, he has to wear it that way.  Ever worn a twisted garment for very long?  It’s very uncomfortable and annoying, but I can’t feel his discomfort so how do I know?
When he wants to eat, he has to wait for me to fix it.  I season it according to my taste which is nothing like his.  Though I try to match what he likes, I can’t taste through his taste buds so the flavor of his food is through my taste buds.
When he wants entertainment, unless the remote is within reach, he has to watch what is on until I can come change the channel or put in a new CD or DVD. 
If he’s cold or hot, he needs me to change the thermostat or bring/remove blankets to adjust his comfort level.  He’s anemic but I’m often hot, have a fan blowing, or lowering the temperature when he’s got bone-chilling coldness to handle.
I manage his medical appointments, often deciding with the practitioners the course of treatment.  I arrange his living space, take him where he needs to go, or buy what he needs to have–all of which is done according to my taste, my timeline, my skill level.  He cannot use his hands or his legs.  He cannot change his own position.  All his comfort is contingent upon my being able to help, my understanding of what he needs, and my willingness to do it.
As is true with each of us, inside ourselves we are still young, still able-bodied, still filled with the hopes and dreams we have always had only now that he is disabled, he is a prisoner in his own body that will not respond to what his mind still believes it can do.  In order to live his life, he has to live through me. 
So last night I was lamenting about living my life through him but he can lament the same.  We live our lives through each other…but then isn’t that what a married couple does anyway?  What God has joined together….well in our case, we are truly one.

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Whose life is this I'm living?

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Have you ever wondered whose life it is you are living?  Sometimes I wonder if I exist anymore. Some days it seems that I only exist to be Lynn’s assistant.  I do not have a life of my own anymore.  Sometimes I try to have one but when I do, I just become frustrated with trying so I try not to try.  I also wonder who would I be if I was not providing care to Lynn?
When you are a caregiver, your entire life is wrapped around the person for whom you are caring. You decide what time you have to get up in the morning based on what you have to do for your loved one.  Here’s how today went for example.  I wanted to attend a meeting today, in person, at work.  In order to do that I had to make sure I had someone who could come in to stay with Lynn.  I had to plan for what he would need while I was away and I had to calculate how long I would be gone, what else I might be able to fit in while I was away, and what he would need while I was away.  I set my clock to get up two hours before I had to leave. I  got up and put him to bed while I showered (he sits up to sleep at night so he can peddle if he gets stiff).  Putting him to bed takes about 20 minutes.  I showered, blow-dried my hair and put in hot curlers. I didn’t apply make up or put on my clothes because I knew they would get messed up as I performed his morning care.  I got his medicine ready and part of his breakfast and went to get him up.  I got him dressed, and brought him into the kitchen to take his medicine while I ate breakfast, then I took him to the bathroom, catheterized him, redressed him for being up all day, brought him back to the kitchen, fixed his breakfast.  He fed himself while I brushed my teeth and applied makeup.  Meanwhile he kept calling me to help with things he was doing.  I was supposed to leave at 10 and did so finally at 10:15.  Not bad; I’m often later.
Today I was able to sit through the entire meeting without being called away.  I was actually able to assume my “worker” role and learn something new.  I was able to talk about something other than MS and to do something that did not involve caring for Lynn for an entire 1 1/2 hours. It was refreshing.  Then I left to go home.
On my way home, I had to stop at Walmart to get some things we needed, go to Krogers to get his medicine, look for a movie he wanted to watch at Foodlion, and make two other stops.  He called me as I was leaving Walmart to ask when I could get home.  Knowing that meant he needed something as soon as I could get home, I skipped a few planned things and headed home.  When I got home, I resumed caring for him for the next two hours and then put him to bed.  Then I resumed working till he woke up.  It’s always a balance between what he needs, what I need to care for him, preparing to care for him, cleaning up afterwards, and planning ahead.  Whatever a caregiver does, he or she has to consider the impact on the one being cared for.  No decision is made in isolation and whatever you might want to do, those plans are contingent upon the other one’s needs. 
My office party is next Thursday.  I’m hoping to go but I know that I can’t be counted on to be there.  If I can’t find a sitter or if he’s sick, I can’t go.  His needs have to come first; just like caring for a child.  I often feel like a single Mom again because it’s the same now as when I was caring for two young children on my own.  Usually at my age, you’re able to start living your own life again but not so if you’re a caregiver.  Your life is not your own.  Your life is lived though the life of your partner or “care-ee” and that’s hard to adjust to at times. 
I have chosen to give up my life to care for my husband.  It’s what I want to do and it’s what is best for him but it doesn’t mean that there aren’t times that I want to just escape.  I would love a day off –a day that I’m not rushing to get what I need done; a day to just relax and be away but in order to get that someone else has to be here and everyone else has their lives to live as well.  I have to ask for help so often that to ask for just a day off seems rather selfish; I already ask a lot from them. I have a lot of really great family and friends who are here to help on occasion so I’m very fortunate.  But I admit, that sometimes I would like to just get away and be me for a while…whoever that is.

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Who Has It Worse?

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When I run into coworkers, friends, family, people from church, etc., I can see in their eyes that they feel sorry for me.  Many say, “I don’t know how you do it, day in and day out. I don’t think I could.”
I don’t feel comfortable when someone tells me that.  I don’t feel like I need anyone’s pity or that we are a tragic couple.  I know that our lives are really quite good.  We get along very well.  We have wonderful family members both close by and far away who constantly support us and give us encouragement.  We have a church family that really walks the talk that Jesus proclaimed while he walked the earth.  I work for a compassionate supervisor in a job that is challenging and rewarding.  I have the best employees working for me that anyone could ever ask for. I love where I work and what I do.  We have enough–enough money to pay our bills, more than enough stuff as evidenced by the fact I can’t find enough places to put it all, and more than enough food as is obvious by our waistlines.  We have good lives.
Yes, our lives are hard at times.  Lynn rarely feels good. He is often uncomfortable.  He is needy at times, stubborn at others, often funny, and sometimes angry.  I almost never get to “sleep in,” or sit down to read a book or watch TV.  I never go out on my own to shop or visit or do anything that is not essential.  I watch every penny we have and the money going out is often more than the money coming in but not always… so it evens out. 
Lynn has a lot of physical challenges.  He has basically no use of his legs or right arm and his left arm fatigues by the end of the day.  Many of his bodily functions do not work well on their own and need some help along the way like urinary catheterization or a bowel routine.  It takes a lot of strength and energy to move him around and by the end of the day.  I’m often tired and sore but a good night’s rest and I’m fine to get back at it again the next day.
When people look at me with that sadness in their eyes and say they couldn’t do it, what they don’t understand is that we didn’t get where we are now overnight.  It was a progression of decline.  By stages his abilities got less and at each stage we learned to adapt.  When it’s gradual you have time to adjust and seek ways to make it better and …. find a new normal.  The people who wake up and suddenly can’t walk, or see, or hear; they are the ones who have it worse.  MS can do that to you.  One day you are fine and the next day you can’t see anymore. How scary is that?  You don’t have time to adjust, you just ARE.  Everyone is scared but trying to support the one who is now blind or deaf, or immobile.  No one has time to really adjust….  Suddenly your lives change and you’re thrust into a new reality.  Now that’s hard.
You know what else is hard?  When you’re caring for someone whose memory is fading.  Lynn occasionally has some cognition issues.  It’s usually just when he’s very tired or feels really lousy, but when he has asked me the same question three times in 3o minutes, it gets annoying.  I can’t imagine dealing with that over and over and over again and knowing that it’s going to be like that every day all day.  With Lynn, I settle him in one place and he has to stay there because he’s immobile.  I really feel for those whose loved one is mobile but not thinking clearly.  I would be afraid all the time that they would leave the house or start a fire or turn against me because they didn’t know who I was.  That’s got to be so much worse than dealing with someone who is physically challenged.  …..  or maybe not.
What I do know is this–whatever is your challenge…whether physical, mental, spiritual, emotional, or whatever it is; it’s your challenge and that makes it difficult and becomes your struggle and whatever that struggle is, it’s hard for you.  Yes, you can always find someone worse off than you are but in their shoes, they may look at you and think the same.  Everyone’s pain is real.  Everyone’s challenge is theirs and it’s just as difficult as the next person’s. 
So who has it worse?  We all do; each in our own way and each with our own struggles.  That’s why we need each other and God to help us carry on from one morning to another to another to another….
Ps.  Feel free if you every need to share to drop me a line if you don’t want to do a public comment.  Sometimes it helps just to share.
 
 

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Lord, please…

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Over the past week, my concern has grown.  I walk into the room and see him sitting there.  His eyes are shaded in pain–not severe pain–more of an aching discomfort due to the broken skin on his coccyx. We’ve tried several types of patches to protect the area but one of them slide and broke the skin.  Then it happened again and more skin was torn.  Now he has an area that’s draining and sore on a place he has to sit all the time.  He can’t be comfortable in bed.  He has to sit up and peddle to relieve the stiffness.  He tries to lie in bed but he just can’t tolerate that for very long. Please don’t let this be the beginning of a difficult to heal bedsore (or in this case, seat sore).
Then there is that look of illness.  He feels miserable–you can see it in his eyes.  He tries to crack a joke but the sparkle doesn’t reach his eyes.  In fact his eyes look sunken and blood-shot.  Blood-shot from the terrible sinus congestion he has which makes it hard to breathe all the time. He has chronic sinusitis and uses 1/3 strength nose spray all the time to combat it but he has to have it at least ever hour.  Imagine how stuffy you feel with a cold and then imagine being like that most of the time.  It’s so miserable. Lord God, help him to breathe easier.
But that’s not what’s behind the look. He feels soooo bad. For months he was on a detox of sorts to try to heal “leaky gut syndrome” and we attributed his feeling bad to that.  Well he’s off the detox now.  Could this “bad” feeling be his reaction to taking the flu shot last week?  If so, why is it taking so long to get better?  Or is this just MS again, rearing its ugly head and making his life miserable?  Where is his quality of life if this is what he has to look forward to?  He tries so hard.  He eats well, exercises, tries to keep a positive outlook and stay active, but it’s so hard to remain hopeful like this.  He’s sick and tired of being sick and tired.  Lord, please show him mercy.
Then there’s the lab work.  I called to check on some lab work he had done two weeks ago.  His hemoglobin was 10.3.  In September it was 12.3!  Why did it drop?  I am hoping that the person who read it to me read an old report.  I’ve sent an email to his PCP to check the lab work since she didn’t order it so we can find out.  If it’s accurate, and I don’t think it is, then something else is really wrong.  I was convinced yesterday it was a mistake but the more I think of it, the more I realize he’s feeling worse and more tired.  His leg is spasming again too and it had stopped, or just about had, when his hemoglobin was up.  Lord, please don’t let that lab result be right because that means another specialist.  He has enough doctors.
He entered the hospital for the first time in his life a year ago this Sunday. During that admission, he was in and out of the ICU four times before he went home.  He’s been too sick the last two years to participate in Christmas and our goal is that he will be able to enjoy Christimas this year AND he will be able to remember it.  Please, Lord, let that come true. 
MS is a strange condition.  I know people whom you would never suspect have MS.  And then I know some like Lynn who seem to have all the symptoms.  I don’t know why it affects some worse than others but I do know it’s disappointing that so little research is being done to look at why it progresses faster in some than others.  I also am angry that there is no treatment for the progressive stages.  It’s like once that point is reached, they are written off.  At least that’s how it seems to me.
He’s calling me again to get him up.  He was able to stay in bed this time about 50 minutes.  I expect he will be up all night now.  Pray he feels better tomorrow.

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Adjusting to being less than the best

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I received my annual performance review today.  I had mentally prepared myself for getting a rating less than what I usually get and was even afraid it might be significantly less but I was pleased…and disappointed…and sad…and concerned. 
Not to brag but I’m very good at my job.  Several years ago I was nominated and received the Employee of the Year award.  We had about 7000 employees then so that was a real honor.  Every year for at least the last ten, if not longer, I’ve gotten an exceptional overall rating.  This year I didn’t.  It was still good, better than just proficient, and even still had some exceptional ratings listed, but it was sad to see my performance decline in writing.
Don’t get me wrong.  I’m not complaining at all about the rating.  It was very fair and probably more than a little generous.  I hold a significant position where I work.  I have a lot of influence and a lot of people come to me for advise…or at least I had and they did.  Now I work remotely every day.  Though I try to keep involved and keep up with everything, the truth is my staff have had to cover meetings for me and are now contacted more often than I am.  People who know me want to spare me anymore stress so they go to someone else.  That’s very kind of them but I’m still working and if no one needs me anymore, I’ll become a liability instead of an asset. I can’t let that happen because I have to work and I have to keep the salary I have now. One of my greatest fears is “out of sight; out of mind,” and my other is “I need you to come back to work at your office.”
I wouldn’t mind being back at work.  I love my job.  It’s very demanding but I find it very rewarding. I really like working to find solutions and knowing what’s going on. I find that working from home, I’m losing that.  I don’t feel connected and there is so much that I am not told about that I would find out in hallway discussions. I see this lower rating as the recognition that I’m not needed as much anymore. I expect that if I continue to work from home, they will find a way to move me out of my job into something else….something not as essential…and something that would be unique and therefore, something to cut if times got tough.  Less job security on the horizon.
So what can I do about it?  Go back to work in my office.  But what if I do that; what does that mean?  It means less sleep since I would have to get up early to get Lynn ready for whomever what going to care for him while I was away.  I’m sure I would not be getting to bed any earlier.  It would mean greater difficulty getting everything done at work that I needed and everything done at home.  Lynn would be very unhappy because no one would pamper him like I do or at least that’s what I suspect because he’s very needy and very particular about how things are done. He doesn’t want anyone here that he would have to entertain as a guest and he doesn’t want anyone he knows well to have to do any of the personal things for him that are needed.  If I had a “sitter” then I would have to put in an indwelling urinary catheter while I was away every day.  I had to do that two days in a row a few weeks ago and he got a urinary track infection from the irritation. So would his condition deteriorate?  If I wasn’t here to straight cath him, to put him to bed when he’s tired, to make sure he gets what he needs to eat and drink, to monitor his medications and to take care of his skin, how long would he last?
So what do I give up?  I give up the exceptional rating on my evaluation, the recognition for a job well done, the interactions with others, the rewards of helping others, the job security, and the challenges of learning new things.  I give up a lot and it hurts but I signed up for better or for worse.  I made a commitment to God and Lynn that I don’t take lightly.  I want to give Lynn the best I have to offer and I want to make his life better than it would be if I wasn’t here to care for him.  So I give up being exceptional at work and I focus on being exceptional at home and hope that somehow it will all balance out. 
For now, it’s the right thing to do…but I admit that I’m just a little sad.

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Disappointments and Guilt

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This week has had several disappointments.  On Thursday and Friday, I was scheduled to take a course in Critical Incident Stress Management for my job.  I was really looking forward to it not only for the new information and skills but also for the opportunity to be back with coworkers and others for the day.  I got up at 5 a.m. and got Lynn and myself ready for the day.  I had a friend coming to stay with him from 9-2:30.  All was going well at first and then his stomach started grumbling.  Not a good sign.  I went on to the class with the hope that it would settle down.  At 3:40, I got a call to come home.  That was the end of my two-day training program.  Friday, I could not go in at all.  Disappointing but a necessity.  At least I got the training manual.
Saturday, my nephew was getting married in Northern Virginia. For me, that’s a 2 1/2 hour drive at minimum.  My daughter was supposed to go with me but she has not been feeling well all week so it was decided that instead she and her husband would stay with Lynn till his son could come help out when he got off work.  As you recall from above, Friday was not a good day for Lynn.  Since he had stayed up from 5:00 a.m. till I got home around 4:30 on Thursday, he had over-extended and in addition to the upset stomach, was exhausted on Friday.  My ride for the wedding (I didn’t want to drive alone that far due to sleep deprivation‘s impact on my alertness..i.e.  I get sleepy when I drive) called to make final arrangements and it was then that I realized just how long I would have to be gone.  They were going to pick me up at 10:00 a.m. and I would probably not get back till midnight.  The truth hit me then like a ton a bricks…I couldn’t go.  I would be gone much longer than Thursday.  Lynn’s stomach was still not totally straight.  I didn’t think my daughter and her husband could get him into bed and his son could not come by till around 6:00 pm. That would be too long without a nap. I couldn’t go.
I was very disappointed and I felt guilty.  My brother and his wife had bought me a suit as a gift so I could have something new to wear to the wedding; I had my parents cancel their reservation for Saturday night for accommodations since they were driving back with me after the reception so now they had no place to stay; and I’m big on family participation and here I was missing a major family event. On the other hand, Lynn is my responsibility.  I have to make sure his needs are met because if they aren’t a set back could occur which could mean loss of the progress he has made or worse yet, another hospitalization.  I couldn’t take that risk.  If I hadn’t already had issues on Thursday, maybe it would have worked out, but now, it was just too risky.
I cried a bit, started calling to find my parents another hotel to stay in since the one they were in on Friday was booked for Saturday.  I called my brothers to let one know I would not be riding with him and the other know that I had made reservations at another hotel for our parents because I could not come now.  (he had already heard about the problem and had made reservations for them himself so I canceled mine.)  The new hotel was right beside the one the rest of the family was staying in so it all worked out good. I called and canceled my daughter’s help and let Lynn’s son know he wasn’t needed and could now attend the party he had needed to cancel participation in so he could stay with his Dad.  It all worked out but it was disappointing none-the-less to give up a special family time.  I’ll live it though pictures and stories but it would have been nice to see it for real.
Guilt again on Saturday night when I got a call from my niece that my mother was on the way to the emergency room due to a fall.  She had hit her back hard when she fell and was having trouble moving.  My first thought was that I should have been there to make sure she was okay.  I called my brother who was following her to the hospital to say what needed to be considered if she was discharged so she could travel back today and what to do if she was admitted.  I have contacts at the hospital where I work that could help me get her transferred back to Richmond if she needed to be in the hospital so we could help out and Dad would have a place to stay. Fortunately that wasn’t needed.  She had no broken bones and was released with pain meds and muscle relaxants.  She and Dad will be coming here shortly and will stay with us tonight and longer if needed for her recovery.
So anyway, all worked out but I share this to say that as a caregiver, your life is not your own and making plans is only a tentative thing…you can never really plan.  Anything can get in the way and throw a major kink into the works.  But it usually works out.  I got to sleep in yesterday so I was more rested.  I always have about three hours of work to do for my job on the weekends so I got that done yesterday and will be able to visit without guilt when my parents and brothers get here shortly…and Lynn is feeling better.  He was able to get the rest he needed. His stomach has settled down, and he’s not feeling so exhausted.  So it’s all good.  It’s just a different good than what I had been planning, but still good.

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I have the blues today

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I don’t know why.  But I’m feeling blue. Maybe the atmospheric pressure is playing a role since we are waiting for  the hurricane to roll in tomorrow night.  I think it’s primarily due to lack of sleep and trying to get away today.

I worked till 10 last night and then Lynn wanted to lie down for a nap.  I put him to bed and had so much I needed to do that I let him sleep from 10:30 till 12:30.  I know that was a mistake and I knew it when I was doing it but I needed some uninterrupted time to finish what I was working on.  (Plus we spilled some urine on his seat cushion and I wanted to get his favorite socks, leg warmers and the seat cushion clean for him before he got up)….so I let him sleep.

Of course he didn’t feel like eating right away when he woke up so I worked on downloading my contact list on my phone so I could transfer the information to my new phone. As usual I ordered what I needed over the internet so I was reading instructions so I could “do it myself.” I got him feed and into bed by 2:45 a.m.   I set my alarm for 9:00 a.m. because I was supposed to have a conference call regarding an issue at work.  At 4:00 a.m. he needed to be cathed.  I got up and did my thing, (while he slept) and was just about to settle back into bed when he decided he was too stiff to sleep and wanted to get up–so I got him up and got to bed around 5:00 a.m. He peddled till 7:00 a.m. and wanted to come to bed.  I was so tired.  I pulled up my work email and a message that I needed to reschedule the 9 a.m. meeting.  I went back to bed.  He got up at 9:00 a.m .  I went back to bed after getting him dressed and settled and fell right back to sleep.  My alarm went off again at 11.

I had a 2:00 doctor’s appointment for myself.  It was for a physical but also to talk about my painful hands and hip joints and the fact that my feet are numb all the time now. I showered, got breakfast, got Lynn dressed, got his meds ready, we ate, I took him to the bathroom, checked my emails, got my stuff for the appointment, put a foley in him for the day since his son was going to stay with him, got a message his son was going to be late but to go ahead and go….In the middle of this, I had several “special” requests, help with his email, help with the window AC, measure something for the device he wants to have built to help him keep his legs moving while in bed.  Each interruption just caused me to become more tense.  I finally, in frustration, told him he couldn’t ask me for one more thing, I was going to be late. He then said, “that’s why I asked you if getting up at 11 would give you enough time.”  To which I responded, “but you also told me you didn’t want me to go if I was going to fall asleep driving so I was trying to get at least 6 1/2 or seven hours when all the naps were totaled.”  He agreed that was more important.  I finally ran out of the house to go to my appointment.

I made it right at 2. I have a 45 minute drive.  I got so sleepy driving and was so tired.  I listened to a book as I drove which helped but I was really more like a zombie.  I read while I waited for my appt.. and was seen. My doctor told me I really needed to find a way to get some sleep or it was really going to take a toll on my health.  She admitted she knew that would be a challenge.  She also told me until I could get some rest, I probably wouldn’t be very successful trying to lose weight because the stress was causing my body to hold on to “stores” to fight the stress.
I think that’s part of why I’m blue.  I want to see if we can get someone to be here at night so I can sleep more than two hours at a time but Lynn is so against it.  He doesn’t want anyone but me to do anything for him.  He promises to find a solution; create a device to help him stay in bed.  He assures me he is getting better and it won’t be an issue soon.  I so want that to be true but I admit, I don’t believe he will get so much better, with or without the device he’s making, that I will be able to sleep.

I asked him if while I was gone he could have Eric get the deck ready for the hurricane and to go to the gas station to fill up the gas can for the generator.  When I got home, nothing had been done.  He had not asked Eric to do any of it, including he hadn’t had lunch and nothing was put away from the things he had done while I was gone. In his defense, he just didn’t think of it but it made me sad. I wish he would think about me a little more and do things to make my life a little easier too.  I know he’s the disabled one and his burden is so much worse than mine. He is so appreciative of what I do and he tries to keep a positive attitude, but…I’m tired, and I’m sad, and I just want to be able to go to the store without rushing to get back home, and I want to not do anything of importance or any chores for a while.  Oh, well.  Time to get over my pity party.
Time to go get supper out of the stove.  Thank goodness all I had to do was heat something up tonight because I’ve been “at it” catching up work and trying to fix his computer  since I got home….It’s 11:30 pm. time to start the two-hour process of dinner and getting ready for bed.    Have a good night and stay safe from the hurricane.

I have the blues today Read More »

I Just Can’t Deal With Another Thing.

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Ever felt like you just couldn’t take one more demand on your energy?  I was like that last Monday night.  We got home from vacation Saturday and I stayed up till 3 a.m. putting things away.  Sunday was much of the same except it was catching up on things at home. Again I went to bed at 3 a.m. and Lynn was up several times so even though I didn’t start my day till 10 a.m., I was very tired on Monday.  Monday was back to work.  I work from home so after getting up late, fixing breakfast, getting us both dressed and fed, settling him down on his peddlar because his legs were spasming, I didn’t get to sit at my computer till around noon.  However, I had already been handling work on my phone while I did all the above (I’ve become very good at multi-tasking).

All day was busy with work…many phone calls and 493 emails to go through that had come in while I was on vacation.  I got some of those done on Sunday and most of the rest on Monday.  The house was hot all day but so was outside so I turned the fan on me and figured Lynn had set the thermostat so it would be warmer.  (He has hypothyroidism and anemia so he’s cold most of the time now). Around 7 pm I ran to the grocery store because I hadn’t had time since we got home from vacation.  When I came back, Lynn was complaining about how hot he was. He did indeed look like he was melting so I rechecked the thermostat because I had set the temp to cool off while I was at the store.  Well it was set now at 70 but the house temperature was registering as 80.  We had a problem!

Lynn told me how to check the fuses in the garage and I went outside to hit the reset button on the heat pump. That wasn’t it.  Lynn then told me to crawl under the house (I hate doing that.  I’m afraid of snakes and not crazy about spiders or mice in case they are there either).  I crawled over to the inside unit, checked the fuses there–it wasn’t a fuse issue–pulled out the filter–hmmm, when was the last time I changed that?  obviously not recently–nothing worked.  It was so hot, I was pouring sweat.  Lynn needed help so I’m back inside helping him while he’s telling me to go next door to see if our neighbor can help (he’s an electrician).  Neighbor not home.  Dinner still needs to be picked, the house is so hot we are both sweating and Lynn is getting very weak from the heat but can’t go to bed because of muscle spasms.  He’s giving me instructions on how to check this and that and to be honest, I thought if I had one more thing to do I was just going to lose it!

Maybe it was the heat; maybe the lack of sleep for two days in a row; maybe the fact that I had a message on the phone from Lynn’s doctor to call when we got back because his blood work was still bad on the anemia; maybe because I knew the AC was going to cost a lot to fix; maybe the hunger; maybe the guilt from not being able to handle it all with grace; but whatever was behind it, I just couldn’t take it anymore…..

But, when you are a caregiver, you don’t have the luxury of giving up. Who else is going to handle it if you don’t?  Lot’s of people are helping us and many more are offering to do so but when you are home alone with someone depending on you and it’s night-time and you know that anyone you call will be burdened, the weight of the responsibility seems like a 2-ton boulder. Know what I mean?

I managed to get through it all that night.  I took several deep breaths, ate a bowl of ice cream (that’s why I’m so fat now), and called my angel of a son-in-law who got dressed, came over and worked on the unit.  He couldn’t fix it but his parents had a window unit they were not using and he went and got that for the bedroom so Lynn could get cooled off.  He was our hero and guardian angel all rolled into one.  God took care of our needs again and gave me the strength to carry on.  He sent my son-in-law who is like a son to me to shoulder my burden and help me to keep putting one foot in front of the other. 

Thank goodness when I can’t deal with another thing, God sends me someone to help carry the load and help me to continue on our journey.

I Just Can’t Deal With Another Thing. Read More »

Triumphs and Disappointments

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We are on our last day of vacation, and as usual, I think everyone is looking forward to going home–although we have had a great time. There is no place like home, is there?

For instance…I helped Lynn take a shower yesterday in a regular shower stall.  I put in the shower chair for him to sit on and then stood outside the shower to bathe him.  Water everywhere, of course!  No room to move him. Had to have his son help me get him out.  Lynn and I were both exhausted, but the mission was accomplished.  I am sooo looking forward to our own shower unit that was installed by our church so I could roll him in and out.

Our own bed…that will be nice too.  Appliances that work and the cookware and utensils we need for dinner. Not having to put all the tables on books so Lynn can get his wheelchair under them.  Not having to remove a screen door so he can get onto the deck.

We had a few disappointments.  The biggest one was we tried to take his all-terrain wheelchair crabbing one night.  He spent a lot of money to get this special chair so he could surf fish and go on the beach.  Imagine our disappointment when he could not get it to move on the sand!  The chair was ordered from South Africa, so getting it fixed will be challenging, but we have already talked to them, and it appears to be a programming issue, so there is still hope.  But we will not be on vacation when it gets fixed-disappointing.

Started to go fishing last night.  Got everything ready, headed out the door and it was pouring rain!  We waited a while then decided to get up early this morning to go.  We did, got to the pier around 7 a.m. and fished two hours.  Several bites but all we caught was seaweed.
Now the triumph! And this is big. Lynn went swimming in the pool.  The boys sat him on the side of the pool till he got warm, then he went in.  The first day we went into the pool that was only 3 1/2 feet.  It was fun but challenging for him to do anything much.  Yesterday he went into the 5-foot pool, and it was awesome.  I was able to help him float around using afloat.  He was ready to kick his legs.  He was even able to float on his back alone, and he’s never been able to do that, but the best part…the very best part was…HE STOOD UP IN THE WATER ALONE!!  Ten times!!  He supported himself with the float.  The boys were on each side to help him get positioned right; then he pushed himself upright.  Awesome… My daughter has the pictures to prove it.
Triumphs and disappointments…. what experience doesn’t have them but all in all, this vacation was awesome. We’re so thankful to have the opportunity to once again vacation together, and to have a break from all the usual challenges.  I hope you get to have one this year too.

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