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Archive for September, 2011

Well, we made it to Orange Beach – by the hardest.  Uncle C was released from the hospital on Monday and was doing fairly well.  My husband and I were scheduled to leave on Wednesday and the rest of the family were to follow on Thursday and Friday.  We needed a day to ourselves since we have very little alone time these days.  The trip has been scheduled for months and everyone was very excited about going.  It has been years since we took a family vacation.  Our three grown children, their significant others, our granddaughter and my parents were all planning to be there.  Uncle C declined, at first saying that he didn’t want to impose on our vacation, but when it came down to it, he just wasn’t up to the trip.  Although mom was looking forward to going, we were quite concerned that she would get all the way to Orange Beach, five hours from home, stay for her usual 20 minutes and be ready to go home.  She was worried too.  In fact, at one point she asked dad, “What did I get myself into?”

Of course, there were issues the morning we were to leave.  Uncle C was up 3 pounds in 2 days – not a good thing for a 93-year-old man with congenital heart failure.  What that means is that he was again retaining fluid.   His doctor’s nurse assured us that he just needed to stay on the “cardiac diet”, i.e. no salt, so my husband and I took off for Orange Beach, leaving him during the day in the hands of his usual sitter, “Christine”.  Now, Christine is not her actual name, but that’s what Uncle C has been calling her for the last seven months.  Since we didn’t feel that it was wise to leave him alone at night, we hired a new sitter to sleep over.  She was recommended by an acquaintance and turned out to be a very sweet older woman.

We arrived at our destination around 3:00 p.m. and soon entered the lovely condo that was to be our home for the next five days.  It was a four bedroom, four and a half bath “penthouse” on the 13th floor.  The view was stunning.  Our balcony overlooked the bay, the three outdoor pools and outdoor jacuzzi, boat docks and Ono Island which harbored beautiful homes that one could only dream of owning.    Although we truly enjoyed our alone time together, my husband and I were looking forward to the arrival of the rest of the gang.

The first to arrive was my mother and father.  Their trip was rather uneventful except for their stop at the Mississippi State line rest area.  Mom went in the women’s restroom and dad in the men’s.  When mom didn’t come out dad panicked.  He saw a woman who worked at the rest area and asked her to check on mom.  This kind woman agreed and soon returned saying that mom needed help.  The state employee waited with dad for two women to exit the restroom, put a sign indicating that the restroom was temporarily closed and allowed dad to enter.  She stood guard.  Mom was in a stall and could not remember how to get out.  Dad coaxed her into sliding the knob over and out she came.  The other issue was a little more challenging.  Her ostomy needed to be attended to so right there in the Mississippi State line restroom, dad changed her ostomy and they were soon back on the road.  Thank you Lord for kind, caring people.   With about an hour left in their journey mom began to get anxious, but once there a miracle happened.  Mom relaxed.  I mean truly, completely relaxed.  No anxiety, no “I’m ready to go now”.  They walked into the condo and were in awe.  Mom immediately went out to the balcony and became entranced in the beauty.  After sitting on the balcony with my husband and me for about an hour saying very few words, mom uttered the statement of the weekend – “I wonder what the poor people are doing.”  My husband and I almost fell out of our chairs laughing and mom chuckled along with us.  It became the catch phrase of our trip.

The weekend went great and mom was a real trooper.  She insisted on coming out to the beach with us every day even though walking in the sand was quite the challenge.  She sat with me under the canopy we brought, attentively watching the kids and our granddaughter frolic in the surf, create sand sculptors and gather shells.  Gone were the morning naps and the afternoon nap was much briefer than usual.  I think she just didn’t want to miss a thing.  No, she isn’t the same woman who a little over a year ago would have been strutting around on the beach with matching everythings, but she was definitely with us and in the moment.  It was a clear-eyed weekend.  She spent the evenings on the balcony, looking out on the bay watching the boats and dolphins as we barbecued and relaxed.  We all ate meals together, played games and enjoyed each other’s company.

The only issue we had was with our cell phones.  On Wednesday morning, before we even left home my cell phone went crazy.  It refused to ring, but would answer itself which was quite dangerous since the caller could hear any conversation I might be having.  It would also scroll through my address book, incessantly ting, ting, tinging as it did so.  Even making a call was a challenge since I had to quickly push the call button as it scrolled through the numbers of my address book, hoping that I hit it just right.  And my husband kept taking his for a swim.  Our first day on the beach, he eagerly jumped into the surf with our granddaughter forgetting his phone was in his pocket.  The phone did not swim well.  Off we went to Wal-Mart to purchase a Go-Phone to replace the one he drowned.  Next time on the beach he drowned another phone and back we went to Wal-Mart to buy his second Go-Phone of the trip.  He had informed the sitters that his phone was ruined and to call mine.  Bad move!

Of course, as fate might have it Uncle C got sick while the new sitter was with him.  He began running 102 degree fever and feeling awful.  Being unsure of what to do, she repeatedly called “Christine” for advice before finally going over to get my neighbor for help.  My neighbor attempted to call my phone which, of course, would not ring but would answer itself at which time they could hear the whooping, hollering and laughter of our game playing.  When I awoke on Sunday morning I had five missed calls from my neighbor beginning at 11:30 p.m.  I immediately knew something was terribly wrong.  A call home confirmed that Uncle C was ill and we instructed “Christine” to call for an ambulance.  My husband headed home a day early.  It turned out that Uncle C had bronchitis and was sent home with only a prescription.  Although it did not ruin our trip, it did put a damper on it.

Everyone made it home safely with lots of great memories and hopes for future trips.  And now everyday when I make my daily visit to my parents’ home, the first thing out of mom’s mouth is, “I want to go back to Orange Beach!”  Oh, how I wish we could, mom.  And I pray that one day we can do it again.

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I knew things were going too smoothly.  Didn’t I tell you things were going too smoothly?  No, it’s not mom this time.  She is actually doing quite well.  She is excited about our trip to the beach and I think maybe, just maybe, she will stay for more than a day.  Mom is as alert and “with us” as I’ve seen her in a while.  But, here we are four days before we leave on our trip with the whole family that we’ve been planning for a couple of months and Uncle C ends up in the hospital.  Normally I would be very sympathetic.  Normally I would be terribly worried about him and not about our trip I’m so looking forward to, but this hospital stay is of his own making.  If he wasn’t so damn sweet I’d be a bit annoyed, but who can get annoyed with Uncle C.

It all started when Uncle C quit taking his Lasix (his fluid pills).  Initially he didn’t let us know he wasn’t taking it, he would just slip it away from the other pills that he takes each morning and we’d find it on the side of his bed or our sitter would catch him flushing it down the toilet.  When we asked him why he wasn’t taking his Lasix Uncle C replied, “Who wants to go to the bathroom all the time?”  Okay, well he has a point there, but he does have congestive heart failure, he just doesn’t believe it.  We tried explaining why it was important for him to take them, but he refused to listen.  Okay then, Uncle C, at least quit flushing them.  So every morning we would find Uncle C’s fluid pill sitting on the table.  Then it began to catch up with him.  Uncle C started having shortness of breath, started complaining of dizziness and then tightness in his chest.  We called his cardiologist who had him take two Lasix a day for three days and weigh him daily.  He had gained five pounds in just a short period of time – all fluid.  Although he wasn’t happy about it, Uncle C complied because, like I said, he is the sweetest man alive.  But, once he began feeling good again he started playing with them.  Maybe one day he would take it, but the next he would not.  Some days he would only take a half.  Well, this week everything went downhill.  He felt awful but would not concede that it could be the fluid. He was having trouble breathing, retaining fluid, had trouble with congestion, was dizzy and felt exhausted.  He’d simply say, “I don’t know what the hell’s wrong with me.”  Okay, I know!  Thursday was bad and we called the cardiologist attempting to get him in that day.  No luck.  We tried again on Friday, no luck.  His office did call back with an appointment for Monday (oh great, now we have to get through the weekend) and sent him off to have blood work done – only no one from his office sent over orders and by the time we got him to the lab the cardiologist’s office was closed.  Not happy with him right now!

So this morning when Uncle C wasn’t up by his usual 7:00 a.m., nor 8:00 a.m. or even 9:00 a.m., I knew something was up.  I kept going in, checking to make sure he was still breathing.  That’s an awful feeling!  When he finally arose around 9:15 he looked awful.  He even suggested that he might need to go to the hospital.  That’s when I knew it was really bad.  I called my husband back from work, called for an ambulance and away we went.

Uncle C will be in the hospital until at least Monday.  We are scheduled to leave on Wednesday.  So anybody taking any bets on this?  Do you think we will actually make this trip?  Just glad I bought the insurance.

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I’m still trying to figure this hallucination thing out.  If you’ve followed my blog you know that it all started with the hallucinations.  The first sign that there was a problem with mom was the hallucinations.  She kept seeing my youngest daughter with this imaginary boyfriend in various places.  She didn’t just see them, she interacted with them, sometimes having dinner with them, sometimes meeting up with them in a casino, etc., etc., etc.   These hallucinations have now progressed to seeing a Martian on the roof and the crazy neighbor sitting on a ladder.

Now, I’m a practical person – sometimes too practical. Just ask my husband, he’s always giving me trouble about never stepping out of my box.  So I’m having difficulty comprehending these hallucinations in my little practical mind.  I know mom is really seeing people and things, but how? Do they look normal?  Are they moving?  Are they three-dimensional or are they just standing in front of her like a cardboard cutout?  Do they speak to her?  I never hear her answer anyone or hold a conversation with the invisible people.  And what do you call these invisible people?  How about “hallucinarites?”

And these hallucinations don’t just affect mom, they affect everyone around her.  I begin to doubt everything.  I can’t help it because I’m never sure of what’s real and what’s not until I turn around and check for myself.  Whenever mom says, “Oh, here comes Aunt H and Uncle E,”  or “There’s Hector!” (Uncle C’s name for the squirrel who visits us daily), we all exchange glances, squirm a bit and slowly turn to see if there is indeed someone or something approaching.  It is such a relief when the “hallucinerite” really is there.  And if it isn’t – only silence.  I’m still not sure how to handle these hallucinations. We are told to just ignore them, but do you know just how difficult it is to do that?  For now I simple turn back around, smile and change the topic of conversation.  Initially dad would say in his gruff way, “Naw, there’s nobody there!”, but he now just goes silent as well.  They bother him more than they bother me.  I often wonder what mom is thinking when Aunt H and Uncle E never actually arrive.  Do they just keep coming until they pass us by and keep on going, walking right through us like an apparition?  Or do they just disappear into a poof of smoke.  It’s not like I can ask her, “Hey, mom, there’s not really anyone there, but can you tell me how they just disappear or do they just keep standing there staring at you, waiting to be invited in?  My little practical brain just wants to know.”  And has she become so quiet, seldom talking, seldom joining in the conversation because she just isn’t sure what’s real and what’s not?  Or are there no longer thoughts going through her mind?  Where did all those words go?  Mom was a big talker.  Huge, actually.   We’d often say that mom kept telling us the same story over and over because she always had to have something coming out of her mouth.  But maybe it was the dementia working it’s magic long before we realized it.

There are so many questions I’ll never get answered and quite honestly it drives me a little crazy.  If only I knew I think I could maybe handle all of this better.  I want to know what my mother is thinking when she simply sits there, staring into space, not joining in the conversations that she use to dominate.  I want to know how she feels when she sees people that are not there and then realizes that she is the only one seeing them.  And every time I can’t remember a word or a name I wonder if I’ll be the next victim.

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For the first time in about a year I feel, well … happy.  I feel almost normal again.  Maybe it’s because things have calmed down.  Maybe it’s because I’ve just gotten accustomed to the chaos.  Whatever the reason, I feel happy and it’s scary.  I can’t seem to let myself fully fall into it, fully enjoy it.  I keep waiting for the other shoe to drop.

Really, things haven’t changed that much.  Uncle C is still living with us, we still have the same sitter that comes Monday through Friday.  I still have no privacy, no time to myself, but I’m feeling better about it – not so stressed, not so uncomfortable in my own home.  And mom still has dementia.  Unfortunately, that won’t change.  But at least for now the hallucinations have subsided, no more Martians on the roof, no more irritating neighbor sitting on ladders or on the patio, no more squirrels, cows or turtles in the yard.  This week she’s been remarkably lucid.  She is actually involved in conversations – not like the mom of old, but participating.  And she is laughing again.  I mean, smiling with teeth showing, mouth open laugh.  I haven’t seen that much lately.   My daughter noticed it too.  After visiting my parents yesterday she called excited about mom laughing loudly as dad teased her about buying her a bikini for the beach, “the kind that has the string that goes up your butt crack.”  That’s my dad!  Today after mom and dad’s daily visit my husband commented on mom’s laughter also.  It warms my heart.

So I think that strange feeling I’m experiencing is actually happiness – and it scares me.

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9/11 – The very mention of those words, nine eleven, brings back awful memories. The thought of the horror, the evil and the pain still fills me with despair.  Every American remembers that fateful day, September 11, 2001 – remembers where they were and what they were doing when the four planes crashed and the two towers fell.  Even though I knew no one who was personally affected, knew no one who perished, I still feel the pain of that day.

So how can I find anything good about September 11th?  Well, long before the evil of that day, in fact 45 years before, my husband was born.  And although his birthday every year since 2001 has been overshadowed by what happened on that day, I still feel grateful for September 11th.  This man born on September 11, 1956, loves me unconditionally.  He supports me, takes care of me, puts me first in everything.  How did I get so lucky as to meet this man from a little town in Kansas, some 700 miles away from my home town.  Was it fate? Was it destiny?  Was it God?  Whatever it was, I feel blessed.

I didn’t know at the time we married exactly what kind of man he was.  You really never know a person until you live with them.  I knew that I loved him and wanted to spend my life with him, but I had no idea of the extent of the compassion that oozes from him.  I know now.  After all I’ve been through with my mother, after all we’ve been through with his aunt and uncle, I know now.  He is so kind to my parents.  He will do anything to help them.  And no matter how often or what time they show up on our doorstep, he welcomes them in with open arms.  He has supported me through my really dark times, he has driven me around for hours on days when I could not quit crying, but could not go home because there were too many people there to witness my despair.  He drove to Houston weekly for months caring for his elderly aunt and uncle and was with her husband of 71 years, praying with him as she took her last breath.  He, without hesitation, offered a home to this 93-year-old “uncle” who actually is not really an uncle at all and has no family left on this earth.

So, yes, September 11th comes with many, many negatives, but for me it also comes with a positive, the birth of my husband.  Happy Birthday, Paul.  I love you.

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We are sitting here in the middle of Tropical Storm Lee which actually is pretty wimpy as tropical storms go.  Lots of rain, but no punch.  We are thankful for that.  Since things are pretty dreary this weekend I slept in today and went to a later Mass than normal.  As our priest began his sermon (yes, the same priest that vacationed with my family years ago), I realized that he was speaking to me.  Yes, there were other parishioners in the church.  Yes, others were listening just as intently as I was.  No, our priest  did not realize that he was speaking directly to me, but I knew.   I also know it was God speaking through him trying to reach me, trying to offer me guidance.  Oh, how I have prayed for guidance.

His sermon was about conflict.  There will be conflict in your life.  That is inevitable.  It is how you handle the conflict that matters.    Father went on to say that we must handle conflict with love – not Hollywood love, not romance novel love, but with true love in your heart, respect for others love. 

Now Father knows of the conflicts in my life.  He knows my parents well, has for years.  He knows what my mother is going through, what my father is dealing with.  He did not even realize I was sitting in the church this morning.  It wasn’t my usual Mass time.   Yet he spoke directly to me.  He spoke of conflict and of love and his words touched me deeply, like they were meant just for me.  I continue to pray for guidance.  Pray that I handle the conflicts in my life, in lives of my loved ones with kindness and grace.  And love.  Father then had us read the Prayer of St. Francis.  It was difficult for me to recite that prayer without choking up.  But it is what I needed to hear.  God is good and so is Father.

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

O Divine Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen

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I have great memories of my childhood and of our summer vacations.  Every year we took a two-week vacation with two other families.  One of the other families consisted of my mom’s sister who is married to my dad’s brother.  I know, I know, it’s a little strange but legal 🙂   They had two sons, my double first cousins.  Since I only had one sister these two boys were my “brothers”.   All three families had campers which we pulled to various locations around the country.  I saw much of the United States this way which was wonderful.  Back then everything was safe and the kids could run and play without worry.  Once we were finished sightseeing for the day we returned to the campground and as the adults had their nightly toddy and cooked supper (usually something fried) the kids went exploring.  It was great.  As us kids grew older our destinations and vacations changed a bit.  For about five years straight we went to Panama City Beach, Florida, because by then we were teenagers and that was the place to be.  Finally, my father declared that he had had enough of Panama City and to kiss it good-bye.  We never went back there.

Our vacations continued after my sister and I were in college.  The last real vacation I took with my parents as a single young adult was to California.  This was the first vacation I can remember in which we stayed in hotels rather than camping.  Our parish priest who we loved (still do!) asked if he could follow along and so off we went, priest in tow.  We crossed Texas in one day – God that state is huge!  We toured San Diego, Los Angeles, San Francisco before heading to Las Vegas.  Our priest was such a good sport.  We teased him about his white bathing suit on the beach that looked like a diaper in pictures.  (He was as white as the suit!)  And I thought it was hysterical when I snapped a picture of him unsuspectingly standing in front of a fountain with statutes of naked women in Las Vegas.  Oh, those were the days.

Even after I was married with children, my parents would occasionally treat the entire family to a vacation.  That included my family of five and my sister’s family of six.  A few times we went to the beach and one year snow skiing.  Then things got complicated with kids participating in various activities and we just couldn’t all seem to get together.  When my children were younger we tried to continue the tradition that my parents started by taking our kids on family vacations.  We weren’t quite as successful as my parents.  We never could manage two weeks away, never camped and couldn’t seem to afford a yearly vacation.  But we tried.

Now my kids are grown and living on their own so my husband and I decided to plan a trip to Orange Beach and invite the whole gang.  We have reserved a four bedroom condo that sleeps 12 for the end of September and our kids are thrilled.  My 4-year-old granddaughter yelled, “You’ve got to be kidding me!” when my daughter told her we were all going to the beach and then did her cute little happy dance.  We have also invited my parents and Uncle C to come along.  Initially my parents were thrilled.  Dad already has the address programmed into his GPS and mom seems happy about going.  With mom it’s hard to tell what she’s thinking since she shows very little emotion and doesn’t speak much.  But I think in her own way she is truly excited about going for the simple reason that she wants to see her only great-grandchild at the beach one more time. Before this beast, dementia, raised its evil head, mom and dad took my daughter and granddaughter to Gulf Shores and they had a wonderful time.  The problem is now mom gets very anxious after about 30 minutes and wants to go home.  Well, Orange Beach is about five hours from home and that’s a long way to travel only to turn around and go home 30 minutes later.  We’ve told mom that she would have to at least stay one night and she gets a little nervous about it.   And things change from minute to minute.  Ask her now if she wants to go and the answer is yes.  Ask her in 30 minutes and her answer might be no.

Then there is Uncle C.  We invited him to come along as well, but Uncle C being the sweet man that he is keeps saying, “I don’t want to impose on your vacation.”  We keep assuring him that he is invited, that he is welcome, that he is part of the family and that we would love to have him come.

I guess the tides have turned.  My husband and I have now become the generation planning (and paying for) activities to keep the family together, keep them close.  But it’s okay, we actually relish that role.  I am really, really looking forward to this trip.  I hope everyone, all eleven show up.  Only time will tell.   Wish us luck!

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