family

Life Changes

I’m going to be a grandma for the first time in June!  My daughter is having a little boy and I’ve been more than a little excited since the first moment I heard the news (which was about two days after she knew she was pregnant). She and her husband are going to make great parents and I’m fortunate that they are not that far away so I’ll be able to see them fairly often (I hope).
I’ve thought a lot about this new baby entering into our family.  I day-dream about babysitting and playing with him.  I want to go to their home for his birthday parties, attend his school functions…all the things grandparents love to do.  Then there’s this part of me that thinks about the reality of my ability to do that.  I expect I can babysit here just fine but Lynn can’t get into their house so  I couldn’t go to his birthday parties unless they were somewhere accessible or Lynn didn’t go.  I also wonder as I look ahead, when the little guy actually starts school, what shape will Lynn be in by then.  That’s five years away.  Thinking back five years ago, Lynn was still working and totally independent.  What if the next five years has the same decline of the past five? ….I can’t even go there.
So instead, I’m going to think positively.  I know that there will be grandma time.  I also know that Lynn wants some grandpa time so we’re thinking about getting him one of those things you strap on to hold the baby so he can safely cuddle him, too.  Oh, probably he could not tolerate much time actually holding or playing with the baby but we’ll find a way for him to participate. I already have visions of the two of them racing down the hallway in Lynn’s powerchair!
That’s not our only life change coming up.  Lynn’s son is getting married in November!  Our kids are all great at finding ways to include Lynn so he can fully be a part of their lives.  For instance, Lynn had secretly hoped that his son would ask him to be his best man but he was not going to say anything about it to him because he didn’t want to put any pressure on him.  It’s their wedding and we want them to celebrate as they see fit.  But he didn’t need to worry, he’s going to be the best man.  We’ve been laughing about me getting him dressed in a tux and this should be something to see.  Maybe a youtube moment that would go viral?
The wedding is at 2 pm, early enough that hopefully Lynn won’t have gotten worn out by then and late enough for me to make sure he’s had all his essential daily activities completed in plenty of time.  The other factor is the rehearsal dinner…you know the groom’s family does that.  My concern, though not shared with them, was that between the rehearsal and the dinner, Lynn would become so worn out that he would be barely able to function the next day.  Well, they solved that problem for us.  We’re having a rehearsal luncheon instead.  Everyone will come to our house, I’ll fix something we can serve buffet style and that can be fixed in advance and when he gets tired, he can rest.  I’m hoping he can do the lunch thing, ly down for a while and then go to rehearsal, come home and rest for the remainder of the night and be refreshed for the wedding.
So we have major life changes happening in our family.  I’m excited about them all but as is true for anything, it has it challenges.  When a family member has MS, special consideration and long-range planning is needed. You hear the news, get excited, and then at almost the same time, start thinking about what changes will be needed so that the MS won’t get in the way.  The important thing is to make sure it doesn’t stop you or anyone else in the family from participating and enjoying the new events.  It would be easier in some ways to just “sit this one out” but we intend to keep our lives as normal as possible and to participate in whatever we can whenever we can… and so far it’s working.  I hope the same is working for you and yours.

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Happy Anniversary

Today is my Mom and Dad’s 59th wedding anniversary.
When people comment about the sacrifice I’ve made to care for Lynn, I truly don’t understand why it seems so different.  I practice now what I saw my parents demonstrate for each other and for us, over and over again. Before I was born, my mom quit her job to take care of her family.  She has never gone back to work outside the home but her work inside the home keeps her busy more hours than most “day” jobs.  When we were in school, she was always active in the PTA; she and Dad often were the classroom parents who brought in cupcakes and other goodies.  They came to every play, every ball game, ever presentation that any of us had. They were always there for us.
When one of them is sick the other one is right by their side helping to make them comfortable. If one grieves, so does the other. If one is happy, so is the other.  They go everywhere together and not because they have to but because they want to.  They truly are the ultimate example of togetherness and oneness.  It was through their example that I learned commitment and self sacrifice. 
And it wasn’t just for us that they sacrificed their time.  They always pitched in to help our other family members with their projects and needs. My parents have always done what they can for others.  If someone in the neighborhood lost a family member, they always went to the wake and they always brought food to the house.  If there’s a celebration, they again bring food and enjoy the event with others.  My Mom records everything through pictures–then she creates these awesome photo albums that includes names, dates, locations and events –each picture has it’s own story.  She’s become the community historian.  She shares those memories with others at all types of community events and enjoys the pleasure her albums bring others.
My Dad can build and repair anything.  He spoiled me in my expectations for a husband.  If he sees something that needs doing, he does it then and there. Be it a car, a piece of equipment, an electrical appliance, plumbing, siding, brick laying, carpentry, whatever it is, my Dad can fix it like a pro.  He loves to read in his spare time and I’m sure that’s where I got my love of reading as well.  We often exchange books and talk about characters.  When we were young, he worked shift work.  He often took only a short nap before returning to work so he could stay up and be with the family, or watch a ball game, or help coach the team for one of his sons.  If there is a community event that needs a helping hand, he’s there. 
At the age of 79 my Dad and Mom are key partners in the community’s fire house and fund-raising.  They help clean up the parks in the area.  They cook for hundreds of people to raise money for the fire house.  They never stop.
When my Mom’s mom started having TIAs and strokes, she and her sisters took turns staying with her and caring for her.  During her last days, I think they  were there nearly full time.  When my Dad’s mom needed a place to live after my Dad’s brother died, they took her in and made her at home. 
My parents are caregivers at heart and they have passed that trait down to me.  They seek to make other’s lives better and there is nothing they would not do for me and my family.  I have been blessed to have them as my parents and to have their example as my guide.
Happy Anniversary, Mom and Dad.

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Sunday was a good day

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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Christmas Eve

Fixing Christmas dinner

It’s 12:12 a.m. Christmas Eve.  In a few hours I’ll be back up getting ready for my kids to come over for our Christmas Eve time together.  I love having them come over but as with all things, MS gets in the way it seems.
I had a call from my son earlier saying he feels stuffy so he might not come for dinner Christmas Eve night because he doesn’t want to expose Lynn to anything.  All our family is very thoughtful regarding exposing him to anything. They know how fragile his health is and how difficult it is for him to recover. But I really want my son to come.  It just won’t be Christmas if  all the kids can’t be here.
Lynn has felt miserable all day.  He’s been very testy and hard to get along with. He’s so tired and uncomfortable and needs constant attention.  I wonder if he will even be able to enjoy the family time together.  Every night for the past two weeks he’s needed a hot shower to make him feel better.  The kids are coming over around 6:30 so that means he can’t have one.  How will that go?  Will he just suffer through?  I expect he will but I’ll see it and know he’s miserable.  Why can’t he feel good anymore?
He and I were not going to exchange gifts this year because we can’t go shopping but I had a chance to do so Thursday and picked up a couple of things for him.  I hope he won’t be upset that I bought him something but I love to give presents and it’s just not Christmas if you can’t give things to people you love.  I know he can’t shop; plus if he shops on-line he has to use my credit card so I know anyway.   It’s just the way it is. I’m okay with no gifts for me but I really want to give to others.
I admit I haven’t had too much Christmas spirit this year.  I used to do so much at church for Christmas and that really represented Christmas to me as much as anything did.  We haven’t been able to go to church in over a year now so a huge chunk of what makes Christmas special for me is missing.
So ready or not, Christmas is here.  No need to decorate anymore.  If presents aren’t bought by now, it’s basically too late…and in two days, it’s over till next year.  I need more time!  I want more celebration… and I want Lynn to be well enough to enjoy it.
It’s time to go feed him dinner then it’s off to bed for the night.  Tomorrow will be busy with a few errands to run and a roast to prepare for dinner and some last-minute wrapping.  I’m looking forward to it but afraid to get excited as well for fear that something will happen to keep us from getting together.  I sure hope we ALL get to enjoy it.
Here’s hoping you get to enjoy yours too.  After all, we are here, and alive, and loved, and Christ gave up everything to give us hope of eternal life by coming as a baby, totally vulnerable in the world.  What more could we ask for?  Whatever happens, we are blessed.
Merry Christmas.

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Family Gatherings

Helping Lynn during family gathering

This past weekend, my parents and siblings as well as our children and theirs, came to our house to celebrate Christmas.  It was a wonderful time; lots of laughing and sharing…as well as good food.  We rarely get to see most of them since Lynn has become wheelchair dependent so these times together are especially precious. 
Changing where and how you do things is one of the adjustments that comes with being a caregiver. Since most homes are not designed for access and steps or narrow doors make it difficult to negotiate around most homes, the places a wheelchair dependent person can go are rather limited. The result is that you either become isolated from your former friends and family or you open your open to them coming to you.  That’s what we do; we have everyone to come our house.  It’s funny but before Lynn became disabled, I used to really stress out and have to have the house clean and neat with everything looking great.  Now, I’m just glad they are coming and have learned to let it go…somewhat.  I still like to make it look nice but I’ve also learned that if I don’t get the chance to do that; everyone understands and it’s no big deal.
Lynn was really looking forward to this year’s get-together.  He has not been able to participate in our  family get-togethers for the last two years due to some aspect of living with MS. This year he thought would be different, but it didn’t turn out as well as he had hoped. He realized shortly after he got up yesterday that it was not going to be a great day.  After breakfast he had to lie down because he was already exhausted.  He rested about an hour and he got up just before everyone got here so that he managed to great everyone and participate through lunch.
He was there for the welcoming greetings and for my daughter’s big announcement.  You
Baby's Ultrasound (profile shot)

see, he and I had known since October that Sarah (my daughter from my first marriage) was pregnant but she asked that we not tell the family so that she could do it herself.  Boy, was that hard but we managed. It’s been especially hard because she has had a difficult pregnancy so far; excessive nausea with a lot of weight loss and at least two hospitalizations for dehydration.  She was out of work for about six weeks and used up a great deal of their savings so it’s been hard not to share with our family the struggles she’s been having.  She’s better now but still on an infusion pump for nausea. 
We’ve been talking for a couple of weeks about how she would make her big announcement.  Since the pump is rather obvious, she had me call her when everyone was here so she could come in last with her coat on.  Then she presented a special Christmas present to my parents (her grandparents).  It was an oranament that she had affixed a picture of the baby’s ultrasound scan to.  It took them a minute to figure out what it was but when they did, everyone was very excited.  It made the day extra special, and Lynn was able to be there for that. 
He also managed to eat a pizza that was especially made for him by our church friend who cooks his gluten-free diet entrees.  Often when he’s this tired he cannot feed himself but he didn’t want me to feed him in front of everyone.  The pizza was the perfect solution. Because he could hold the slices, he was able to feed himself successfully, plus since everyone else was also eating pizza, he fit right in.  (Besides that, the pizza they made for him was wonderful!)
Right after lunch, the family gets together to play games.  It’s a way for all of us to be together and share in an activity of fun regardless of the age of the players. We divide up into teams and have a lot of good-natured competition.  Once we started the games though, Lynn had to lie down.  He was absolutely exhausted.  I put him to bed and kept the baby monitor close so I could hear him when he needed something.  For the rest of the day, I divided my time between taking care of him and coming back to the party. Even when he woke up, he was feeling too bad to join back in.  I attached him to his peddlar and would come back about every twenty to thirty minutes to make sure he had what he needed, give him either hot tea or cold water depending on what his body temperature was feeling at the moment, and cathing him since he was drinking so much.  He was very disappointed but felt so terrible that there was no way for him to join in. 
Overall this year’s gathering was better for him than last year’s by far but once again he wasn’t able to really fully participate… and neither was I.  I’m fortunate that my family just steps in and picks up the slack.  They put the food together and set everything out.  They also cleaned it all up and I came out of his room to a clean kitchen with everything put away.  They really try to pitch in with whatever they can do.  I really appreciate that because it allows me to also enjoy the time. 
When you are a caregiver, it’s like when you have small children–you never really get time off except that with children, it’s a little easier to get a sitter.  When the person you are caring for is 6 foot tall, weights about 200 lbs, and can only do very limited things for himself, finding a sitter is not so easy.  And while the person is an adult, you find that you watch over them in much the same way that you watch over a child.  You are constantly watching to make sure they do not run into anything with the wheelchair, you anticipate what they need so that it’s within their reach or you go get it for them, you watch for signs of distress…are they warm enough?  comfortable?  do they need to go to the bathroom? did they get enough to eat? and on and on.  I ate my meal standing up next to him so that I would be close in case of a problem.  I also am always looking around to see if he has a pathway that’s big enough for him to get into or out of areas without knocking over something or someone.  As a caregiver, you must always think ahead and plan for the what ifs?
All in all though, our family get-together was great.  I had time with everyone.  I managed to eat and snack and participate in the games.  I managed to be both a part of our family fun and the companion to Lynn that he needed…so it’s all good.  It’s different but it’s good; just like so many other aspects of this condition.  
I have three more celebrations coming up this week.  Thursday someone is staying with Lynn while I go out with my staff for lunch to celebrate the season.  Saturday night our kids and their significant others will be here for dinner and then Sunday, Lynn’s family will be here for lunch.  I am looking forward to it all and hope that you all will be having similar good times and good memories. 
Merry Christmas.

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Christmas with Family

 

My Mom and Dad arrived today in anticipation of our family get together at our house on Saturday with my family and my brothers and their families.  Everyone comes to our house now because Lynn’s powerchair and other equipment do not fit as well into a home that is not equipped for them. 
For years we all traveled to Franklin County located at the foothills of the Blue Ridge Mountains.  I really miss seeing those mountains with the snow caps through our kitchen window each morning.  Richmond has hills but those Blue Ridge Mountains are awesome with snow on them.  Every once in a while there would even be snow at my parent’s house when we went and that really made it feel like Christmas.
My brothers and parents are the ones who offered to start having Christmas at my house a few years ago.  I was worried about going to my parent’s home that year due to Lynn’s mobility issues and wondered how to help Lynn get around when we were there but did not share my concern.  However, they realized the struggle and offered to change our tradition and come here instead.  I know that was a sacrifice for everyone because, after all, home for Christmas is where you met Santa years ago, right?  I really appreciate them giving that up and coming here.
This year is especially special.  For the last two years, Lynn has been home but too sick to participate or really remember any of the activities.  Though he’s really tired from the ferritin deficiency, this year he should be able to participate.  He’s very excited.  He has decorated his wheelchair with blue LED lights (or rather I put them on with him telling me how to do them) and we have a small Santa hat and scarf on the back of his headrest.  It’s really very cute.  He even has a special Santa hat that lights up and bounces like a spring and blue and white toe socks to wear.   I’m jealous.  I don’t have anything festive to wear but then maybe I’m really okay with that. 
Several people have helped me decorate this year.  My brother, sister-in-law and niece came and got it started two weeks ago.  Then I did a little and a group from church came and decorated outside and finished up inside.  I must say, it really looks nice around here. It may stay up a lot longer than Christmas though since taking it down is not my favorite thing to do!
I love Christmas decorations.  I admit I wouldn’t do as much as we did this year if it was just me doing it but I’m so happy having so many Christmas items sitting around and having all the windows and doors decorated.  There is just too much to do to have spare time to decorate by myself but I’m very blessed that so many people seem to know how much Christmas means to me and came out to help me have the enjoyment I would not have otherwise.  God has blessed me with so many wonderful friends and family members.  I am so fortunate.
Another way our traditions have changed is the food.  My mom used to fix a huge spread.  She made everyone’s favorite food and had about 10 different desserts to pick from.  Really! It was awesome.  She still brings several desserts but we don’t cook on the day we celebrate anymore–we order pizza!  We all love it and not cooking or needing to clean up gives us all more time to visit. 
We don’t exchange presents either.  Most of us are on tight budgets. Instead we play games and win prizes.  We don’t really need the prizes but they are fun none the less.  We divide up into teams and all ages play together.  We have lots of good laughs.
The main joy of Christmas is the love of family and the celebration of the birth of our Saviour.  Traditions are a fun way to celebrate but when they no longer work for you, then it’s time to stretch them a bit and make the love and joy of the season be the focus rather than doing something that takes the joy out of the season.
I hope you get to celebrate with your family.  Christ’s love for us was so strong that he gave up his kingdom for a time and all the comfort and joy of home to come be with us so that we could live forever, if we only choose to follow him.  That’s the true spirit of Christmas and the joy and love of family together reinforces that same love.
May God bless each and every one of you this Christmas season. 
Merry Christmas!!!

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Whose life is he living?

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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Weathering the storm

Hurricane Irene has moved on now and we fared pretty well.  We lost electricity at 2 pm on Saturday and we still don’t have it back here at 5:30 p.m. p.m. on Sunday.  Our yard is a mess and we’ve lost everything in our refrigerator but I think the freezer food for the most part is okay.  We have a generator running a small air conditioning unit and a friend brought us another one for the freezer which also allowed me to hook up a TV and the computer.

Lynn is feeling really bad though.  Low pressure systems really hurt him.  He feels like he’s been run over by a truck.  He’s also emotionally hurting.  He’s been on the verge of tears all day because I’m having to do everything to recover from the hurricane.  He’s so frustrated because he can’t help or do it himself.  It has been difficult trying to help him and manage everything in the aftermath plus, I couldn’t sleep much last night.

It’s hard seeing him so upset over his loss of ability to help out. It hurts as a man to have your wife do everything for you and then also handle emergencies as well.  He feels so worthless at times and that’s so hard to see and so hard to help him overcome because the reality is, he can’t do those things anymore and he is limited on how he can help.  I try to help him keep his “manhood” by letting him help as much as possible but I often get frustrated because I just don’t know what I’m doing and it’s not easy for him to explain it to me at times.  I’m pretty dense with mechanical things although I do eventually “get it.”

The power company has us on priority but who knows when we will be fixed since there are probably hundreds also on priority with medical problems.  My daughter has come over to get the gas can to get more fuel for use tonight. Sure hope nothing in the freezer has gone bad since we plan to eat that!

If anyone’s looking for something to do, I know a yard that needs to be cleaned up!

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I Just Can’t Deal With Another Thing.

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.

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Triumphs and Disappointments

As skin ages, it loses elasticity and the ability to self-repair as quickly. Good skincare is essential in preventing injury to the skin that can lead to infections.

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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Vacationing with MS

We are on vacation.   It’s so nice to be away from home, with the sound of the beach in the background and our children around us but unlike the days before MS, vacationing with MS is not a relaxing experience.

First is packing to go…I had to pack his cool vest, his exercise equipment for balancing, his Hayek vent, his peddler, medications, two power chairs (one is a 4-wheel drive for the beach), one manual wheelchair, a shower chair, nebulizer, catheterization supplies, and then the regular things you take with you.

I rented a wheelchair van this year because Lynn’s leg spasms are so bad I was afraid he would have a set-back if he had spasms all the way to the beach.  The van allowed him to sit in his power chair, and if his legs spasmed, I pulled over and connected him to his peddler.

My daughter and her husband drove along with us and had to put most of our luggage in their car because our van had so much equipment in it. All the way here, I was driving and addressing his various needs at the same time.

Then we got here and unpacked the vehicles and discover that the entrance ways have a steep threshold so fortunately, I thought to pack a portable ramp so we could get the wheelchair into the condo.

Once inside, we need to move the furniture around so the wheelchair can get by things without damaging anything. We test out the bathroom–powerchair won’t fit so we test the manual chair…it’s tight, but it fits.
Today we tried to take him swimming.  It worked, but it took our two boys to lift him into the pool and me to hold his head out of the water while we floated around….but he was able to “go swimming.”

I used to get up first thing at the beach and go to the pool for the day.  I would read 4-5 books during the week.  So far, I’ve read three chapters.  Here when I get up I get myself ready, fix his meds, get him up, fix his breakfast, help him eat if he needs it, take care of his morning hygiene, then he rests a while and needs to be cathed again, then he needs this or that, after about three hours, I can go to the pool for a while but with a walkie-talkie in case he needs to be cathed again.
Not like it used to be, but it’s still vacation, and it’s still good to be away.  Tonight we’re going to try to go crabbing after dark using his all-terrain wheelchair.  He hasn’t used it yet, so we hope it works out for him.  Let’s hope he doesn’t drive it into the ocean or get stuck in a sand bar!   It’s all good though, and we’re glad to have this time together as a family.

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