changes

Was That a Vacation?

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We were on vacation when I wrote this blog this week. I was not able to post a blog this week because, unknown to us, the condo we use changed their practice this past year and each home owner is now required to provide their own internet service to their renters.  The home-owner for the one we rented, apparently decided internet access was a non-essential amenity for their guests (I found out later that most initially believed that to be the case but most are changing their minds now with all the complaints).  Fortunately, the condo office allows you to come to their lobby and “borrow” access while there. Unfortunately, for some reason, I could not get my computer to work with their service (probably my limited knowledge of computers being the “fault” in this case.)
Every year I look forward to vacation and being at the beach.  Lynn’s son and fiancé, goes with us as well as my daughter, her husband, and this year we have the addition of our new grandson.  The family time is wonderful and something I really look forward to but vacations now are very different from years gone by.
First off, the preparation is different…all preparation, along with all the daily activities of our home-life are my responsibility.  Periodically, Lynn would provide instructions like…”don’t forget my small white fishing rod,” (which I forgot) and “I want to bring the red and blue weights to use to work out…no change that to the small and large gray ones…no I think the red and blue ones will be enough…” By the time I finished packing, I had ½ a suitcase of clothing for myself, my computer, and a few books (none of which I had the opportunity to read other than a few chapters in one) and everything else was about Lynn.  I brought an extra-large cooler for all his specially prepared food; clothes for hot, cool, cold, and warm conditions plus layers for in-between; exercise equipment; shower and toileting equipment; his medication and supplements (which aren’t a few); his peddler (plus a spare in case one broke); his foot massager; catheter supplies; nebulizer and supplies; spare wheelchair; spare cushion for power chair; charges for all aforementioned equipment; a microwave for our room; and many other miscellaneous supplies.  Yes, I packed our house.  I barely had room for us in the van!
Then the drive down is very different.  He used to do all the driving because I get very sleepy when I drive.  Now I do all the driving and just being the passenger is extremely tiring for him.  It’s a debate whether to stop and let him out of the van to rest or to keep going so he can lie down when we get there.  Since we were traveling with a new baby in the car behind us, we stopped a few times for feeding and coffee for me so I could stay awake before we decided to travel separately.  Once we got to the condo, it was time to unpack and arrange everything…no small feat.
It took almost two days for Lynn to recover from the trip.  During that time he needed almost constant attention…and he seems to think I’m the only one who can do anything for him.  By Monday night, I was in tears.  My family vacation was no more than me in a room with the door shut (because Lynn was cold) taking care of Lynn’s every need and him  being unhappy because he didn’t have access to the internet, the cable package in the condo was limited, and he felt lousy, exhausted, and miserable.  Plus he decided he would try standing up with the help of our son and son-in-law…which didn’t work at all, so he was depressed about that.  What a vacation!  
I finally spoke up and shared my depression about spending our entire vacation shut up in a room with our children in the next room but inaccessible to me.  He realized what he was doing and then it got better.  He came out of our room each night after that point for us all to watch a movie together plus I put in an indwelling-catheter two days and managed to go to the pool for an hour (where I slept).  In fact, I’ve spent a lot of time on this trip sleeping.  I think my body is trying to tell me something.
So after a rough start, things got better.  The others put in a lot of effort to make sure I had some “me” time.  I had to remind Lynn periodically that others, besides me, could help him when he needed it but he would better at asking others for help when I reminded him of that fact.  Plus on Thursday when he tried to stand up again, he actually did better.  He could not really stand but he was almost there, so he was more satisfied with his efforts.  We also watched “JAWS” together and had a JAWS breakfast in honor of the meal scene in the movie.  It was a very nice time of family sharing.
One morning we got up at 5 to go fishing but by the time he could get ready, the sun was too hot and that trip was cancelled.   We tried again the next day, skipping some of his morning routine, and he managed to be on the pier for about two hours before he had to come in.  He was too tired to hold his own rod though which was a disappointment.  He tried twice but just didn’t have the strength to control it.
Today is the day after we got home.  I’m exhausted and irritable from the unpacking and trying to get caught up.  He’s exhausted and irritable from the traveling and being very needy but I guess things will settle in soon.  It’s good to be home though where at least he can get on the internet to entertain himself and watch his favorite programs.
So, “Was this vacation?”  Yes, it was…and one was able to enjoy periodically.  Different from the ones in years gone by but one still full of family and love and occasionally relaxation…just different from what we did in the past.
… Just another adaptation that comes with being a family caregiver.

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Grieving over things lost

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I thought I was beyond grieving about how things had changed. …or maybe we are never completely finished grieving over loss.  It seems to come back when you’re not expecting it which in many ways makes it harder to handle.
Here’s what brought it on this week.  Every morning as I’m preparing Lynn’s morning medications and nutritional supplements, he listens to his Bible lesson for the morning and then he plays a few songs off YouTube. He loves music.  He is a very talented musician and has a beautiful tenor voice.  Besides the fact that he can no longer play his guitars or hold drum sticks, he also can no longer sing.  His diaphragm muscles are too weak to sustain the slow release of oxygen needed to sing without having too many “breaks” in the lyrics. 
One of his daily exercises is to sing a little trying to strengthen those muscles.  I usually am not in the room when he sings and since he can’t sing very loudly (you need breath to project) I usually don’t hear him.  This week, however, I came into the room as he was singing along with Elton John’s, “I Guess that’s Why They Call it the Blues.”  I like the song as well, so I came into the room singing along.  As I was unhooking him from the peddlar so he could come into the kitchen to eat, we were singing along together.  I could just hear the sound of his former voice.  (Even as I write this, I have tears in my eyes and feel like crying.)  He could not sing a full verse and he would have to “cut out” at the highest notes, but the voice was still there. 
I miss that voice.
I think it was Lynn’s musical talents that made me fall in love with him in the first place.  I’m a sucker for a ballad singer…especially one who plays guitar. Plus he used to write me songs for special occasions that were beautiful.  He even wrote one for me that he sang at our wedding. (everyone say ahhhh…..)  For me, that was my most romantic part of our marriage and relationship. 
That’s pretty much gone now and I miss it.
I miss those times when we used to sing together with old songs on the radio. I miss when he used to surprise me with songs for special occasions.  I miss being in choir with him and practicing our parts as we drove somewhere.  I miss hearing his solos at church.  His voice could touch your soul it was so sweet.  I really miss it and I’m grieving that loss today.
I hope that it will return one day but I don’t expect it to.  During one of his hospitalizations, I was told his loss of lung capacity was significant and would likely decline further over time.  He’s much better now than he was but I also know that anything that affects his lungs could create a crisis for him.  Practicing singing will help make that more difficult but it won’t prevent it.
I guess the other part I miss is the intimacy that his singing gave us.  Our hearts connected during those times.  We can no longer be physically intimate and though we are closer now than we ever have been, the relationship is different when the husband has to have all his care provided by his wife.  The man wants so much to care for his wife, to protect her, to do for her and make her life better.  It’s the essence of being the husband.  When the wife becomes the protector, the provider, the one who cares for and does for both of them, it changes that relationship.  It’s still a good relationship but it’s different.  I miss my protector and I miss the romance.
I don’t know why I’m feeling this way all of a sudden.  I just got caught off guard by his singing…nothing else….but then I guess that is how grief is.  You think you’re okay and it sneaks up on you even as time goes by.  It’s just one more aspect of MS (or any life changing illness or injury) that we all live with…saying goodbye to what was and accepting what is.

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Life Changes

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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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Wondering where this road will go

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Ever make plans for the future that didn’t quite turn out as you had hoped?  Yeah, who hasn’t.  That’s how MS affects my life.  We make plans and then he has a new struggle to deal with and the plans we had, take a back seat.

This is a second marriage for Lynn and me.  When we got married, I had two children and he had one whom he had with him intermittently.  He had a log cabin with two bedrooms; I had a house with three and a foundation for a fourth.  Therefore, we moved into my house.  Lynn is a carpenter by trade and had built his log cabin. Therefore, we decided to buy land and build our own home, literally.  Lynn designed the house, sent the plans to a timber frame company who took the plans and created shop drawings. We bought the timbers, he then took those plans, and in his spare time after work, he cut the timbers for the tongue & groove assembly. On weekends, he put in a foundation for the basement which took two years for him to do on his own.  By the end of the two years, the fatigue from the MS made it difficult for him to tolerate working more than an hour.  If it was hot, he couldn’t work at all.  After finishing the foundation, he began to put stone on the columns that would be the porch.  I had to mix the cement, bring him the stones and help him hold them in place at times.  Gradually, he could not do even that.  So now we have land with a finished basement and a few columns with the stone in place.  He hasn’t felt like working on it in over two years.  Plans change…

During the past two years we have been dealing with his change in mobility.  Two years ago he was able to walk with a rollator. Now he uses a powerchair and has limited use of his right side.  In the mornings he can feed himself.  By night he can’t do that.  On his “bad” days, I feed him every meal and do everything for him including scratching any itch, helping him unclench his curled up fingers from spasms, helping him change positions…just about everything.  So instead of building a house, we have focused on adapting this one.

Has your loved one gotten a powerchair yet?  They are wonderful but not always the easiest thing to get into and out of tight spaces.  When Lynn first got his, he wanted to see how fast it would go so he would get at one end of the hall and “run” to the other end.  Sometimes he would try to make the turn into the bedroom door.  Not such a good idea.  We eventually had to take down the door  because he hit it so many times, it was coming off its hinges.  We also had to put up metal plates over areas in our walls where the metal foot plates of the chair would hit the walls and cut into the sheet rock.  We currently have a rather large hole in the wall where the handles behind the chair cut into the sheet rock when he turns into the bedroom.  Where before I used to care about my house looking neat; now I just care that it’s functional.  What’s important changes…

When Lynn first got his wheelchair, he was embarrassed to be seen in it.  He was dealing with the loss of his image as a man and a provider.  He did not want to be seen as weak or have people feel sorry for him so he would tend to avoid people.  Me, as I mentioned before, I’m a realist.  If he needs a wheelchair, he needs a wheelchair and I don’t care what people think.  The wheelchair made our lives easier and that’s all that mattered to me but I had to be sensitive to how he felt. That got frustrating because I wanted him to still go to church with me and I felt he was letting his pride get in the way of living his life.  So I would have to remind myself that this was his life and his way of coping.  I needed to let him adjust the way he needed to–gradually, a little at a time. So for much longer than we should have, we used a rollator as a wheelchair so that he could tell himself he was not wheelchair dependent yet.  He finally made the transition to the wheelchair when circumstances made it necessary for us to use one for a while on a trip and he saw how comfortable it was.  Adjustments take time….

We are at a point now where we are trying to decide whether to finish that house we started.  We have prayed a lot about it, especially Lynn.  He was talking to God one day and asked Him to let him know what he should do.  Out of the blue, he got a call from someone asking if we wanted to sell that land.  So you think, is that the answer, to sell the land?  We don’t think so.  The person who called wasn’t really interested in buying; he was a builder and wanted to finish it.  He wasn’t the one to do that because he had never built a timber frame house before but it got us thinking that we needed to make a decision.  I contacted a friend whose husband build’s timber frames. He was great!  We felt very comfortable with him and feel like he’s the one to build it.  Lynn can be the general contractor since he knows how to do that so he can feel that he’s still in control of finishing the house.  We have many friends who are tradesmen; so he’s contacting people for bids.  We are still deciding what to do–need to make sure we can afford it since this house might not sell well–but it’s giving him a project and a purpose which has been missing for a while.  So again,  plans change or do they just roll around again?

I have my fears about building the new house.  I’m the only one working…what if I get sick and can’t work?  What if we start building and he get’s sicker and can’t finish it?  Should we save the money so I can hire someone to help me provide his care?  Do we adapt this house more (we’re talking major bucks to make the changes we will need) or just fix up this house to sell and adjust the floor plan of the timber frame?  Either way is not cheap.  If we move, we will be further away from my daughter and her husband but closer to our two sons and my job.  My daughter is ready to start a family and I want to be near our grandchildren.  Will moving further away make that more difficult to do?  So many questions.  Most of my fears I try to keep to myself but sometimes they get overwhelming.  I’m the caregiver.  I have to look out for both of us and our future.  I want the new house but he’s been in the hospital three times already this year; is it a good idea to build a new home? So many questions and so few certainties.  So I leave this blog with the request for prayers from you that God will show me what to do…to make it clear what our decision should be about the house(s)… will provide a way for whatever that decision may be and help me to find peace in the decision.

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