Archive for October, 2011

Well, the owl’s still hanging around and so is Uncle C.  Everyday when he rises (which is earlier and earlier daily) we ask how he’s doing.  Everyday we get the same answer, “Oh, I don’t know.  I hate to keep complaining all the time.  And nobody wants to hear me complain, but…”  Several times he has walked in looking dejected and declared to us, “I think this is the end.  I’ll be gone soon.  Don’t think I have much time left here.  I’m okay with that.  But I thought I’d be around for a couple more years so we could go to Europe or Florida, or Colorado (or fill in the blank)…”  But then daily when I get home from work and ask his sitter how he was that day, she always says good, he had a good day.  He has her take him to Wal-Mart for items he wants, even bought some wine that he likes this week and drank it with lunch and most nights with supper (that’s in addition to the nightly Bloody Marys).  She finally told me yesterday, “He just playing y’all.  You don’t know about old people, but they always complain so they can get you to feel sorry for them.  He’s fine.  I’d know if he sick.”  And she would.  She has that instinct that I don’t have.  I tend to believe everything he tells me. 

Every morning he complains about having the sweats during the night, complains about having to change his shirt two or three times a night.  My husband keeps telling Uncle C that it is probably because he’s running a low fever.  Naw, I don’t think so.  I think it is because he had us get him a portable heater for his room and keeps it on 83 degrees!  It’s like a sauna in there.   When I mentioned to Uncle C that I thought maybe it was because his room was so warm he vehemently disagreed. 

One day he tells us that he’s ready to move into the house we own across the street from us and the next day he’s dying so we’re too afraid to move him.  Maybe he actually wants to move, wants some privacy, some place to call his own, but he’s scared.  I don’t know.  Wish I did!  It’s not like I can say, “Hey, Uncle C, are you dying or do you want to move?  If you don’t want to move just say so, it’s okay, you can stay, just quit dying on us.” 

I’m just not sure what to think honestly.  Are you on death’s bed as you proclaim or are you just wanting a little extra attention from us?  Or is it that you’re just not sure yourself?  Whichever, it is killing me.  This emotional rollercoaster ride is just torture.  One minute he’s dying, the next he’s talking about getting in his camper and driving to Florida for the winter.  Holy cow!  I’m having trouble dealing with it all.

And then there’s my mom who has her ups and downs as well.  One day she looks really good, chatting a bit and clear-eyed.  The next might be completely different.  The hallucinations continue, Princess is still with her (I haven’t mentioned Princess to dad yet, he might be surprised to know that they have a dog) and invisible people still arrive daily, usually me.  She takes it all in stride, but dad doesn’t. 

Mom told me the other day that she really looks forward to seeing me everyday.  “I do too, mom,” I replied and gave her a kiss.  It was a sweet, tender moment and I want to focus on those moments instead of the chaos in my life.  It’s difficult, but I’m trying.


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This blog began as a way for me to understand, deal with and accept the slow loss of my mother as I know her.  And it has helped me tremendously.  For some reason writing down my experiences, my feelings, writing about the ups and downs of this horrid disease called dementia has become my retreat, my therapy.  In the beginning it was just about my mother and my dealing with her decline.  But along the way I felt compelled to include the many other things going on in my life – the death of Aunt J and the decision my husband and I made to share our home with her loving husband of 71 years.  It hasn’t been easy.  None of it.  If I could change things I certainly would.  My mom would still be prancing around in her little matching outfits with matching jewelry, make up on and not a hair out-of-place.  She’d still be talking nonstop about something or other and we would still be laughing about mom always having something coming out of her mouth.  Oh how I miss that.  And if I had some magical powers I would bring Aunt J back, tell her how much I really enjoyed our time together, our chats, our visits and just how much I love her.  But the one thing I would not change was our decision to bring Uncle C into our home. It’s been hard.  Very hard at times.  But caring for this old man has been an experience I will never regret.

After two weeks Uncle C is finally home from the hospital, but he’s not himself.  He’s tired, physically and mentally.  He’s tired of life and ready to move on to the next one.  I feel so selfish when I think that I’m really not ready for him to go yet.   I’m pretty sure that at 93 I’ll be ready too.  But it’s very difficult to watch this man slip away.  I feel like I am watching a slow death unfold before me, in my home, and there’s nothing I can do to stop it.  It’s difficult.  It’s depressing.  It’s sad.  Try as I might I can’t find a silver lining in that scenario.

And there’s the damn owl – hooting, hooting, hooting at night.  He’s close, very close.  The first time I heard the legend of the owl was when a friend died of a heart attack in his early 20’s. His mother told me that she knew death was near because of the owl that had been hanging around her backyard.  I really never gave that much thought until last week when the owl kept hooting, waking me up at night. It was near, very near.  And when I mentioned it to our sitter she immediately said, “That means death.”  Yea, I’ve heard.

But Uncle C does seem to have 9 lives so maybe, just maybe, he’ll recover again.  I’m just not sure he really wants to.  And that makes it even harder to witness.

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After leaving work yesterday I made a quick stop at the grocery and then ran home to start a soup for Uncle C.  I promised that I’d take some soup to him at the hospital since he hates the hospital food and is refusing to eat it.  By the time the soup was done and I was ready to leave for my daily visit to see mom and dad it was 4:30, much later than my usual time.  In my haste to get the groceries out of the car and into the soup pot I realized I had forgotten my phone in the car and, of course, there was a missed call and desperate message from dad.  “Give me a call, I need to talk to you.”  Before I even got the call off I was at their home but the garage doors were closed and they were not home.  Mom had gotten anxious and worried when I wasn’t there at my usual time and dad, not being able to reach me, had taken her for a ride.  They returned shortly after I arrived at their house and mom and I sat on the patio while dad watered his plants and picked pecans.

At one point mom looks out to the back yard and states, “Oh, there’s Meenu.”  “Who’s Meenu, mom?” I ask.  “Meenu is the neighbor’s cat.”  Okay, well the neighbor could have a cat so we’re good on that one.  Mom repeatedly refers to Meenu and though I don’t actually see the cat, I’m willing to accept that it is indeed there.  I ask if Meenu often comes into the yard.  “No, Princess chases her away,” mom says.  Confused I ask, “Who’s Princes?”  “My dog,” mom responds.  Well, we’ve had dogs throughout the years, one named Susie and one named Spunky, but never a Princess.  And my grandmother (mom’s mother) had a Chihuahua that only ate spaghetti named Pee Wee, but still no Princess.  Playing along I ask, “Does Princess chase Meenu out of the yard?”   “Oh yes. Princess runs after Meenu barking and growling.  Look, there goes Meenu on the top of the house!” mom exclaims.  Now how exactly do you respond to that?  I handle it by changing the subject and ask about the birds – that’s always a safe subject.  I didn’t share Princess with dad because he still can’t find the humor in these hallucinations, but I can’t help but chuckle when I think about the imaginary dog Princess chasing the imaginary cat Meenu up the house.

I’d love to know where in the world Princess came from?  Did she always want a dog named Princess?  She never really was a dog person.  Or maybe she always wanted to be a “Princess”.  That actually makes more sense knowing mom like I know her.  I think I’ll just start calling her Princess Mom.  I think she’d like that.

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I’m trying desperately not to sink back into that really dark place inside myself.  I feel it happening.  It always starts the same way – exhaustion.  The feeling of being so damn tired I struggle to put one foot in front of the other.  And then the emotions just go flat.  I don’t feel much – not happiness, not sadness, not excitement, just – nothingness.  I’m fighting it.  I’m fighting hard, but I think I may be losing.

Uncle C is still in the hospital and will be for another four or five days.  He’s very depressed about it and continues to talk about the sleeping pills he longs for to just end it all.  The doctors discovered that he had fluid between his lung and the lining of his lung.  The fluid was infected so they had to go in and put a tube in to drain the fluid.  And mom’s eyes continue to get foggier and foggier.  She’s speaking less and less and the hallucinations are occurring daily again.

I’m so tired of the hospital.  I’m so tired of planning my days around trips to the hospital followed by trips to my parents house followed by their trips to mine.  I’m so tired of leaving the hospital feeling like I need a shower to cleanse the awfulness off of me.

I know, I know – I’m trying to see the good in things.  I’m trying to see the positive side.  Sometimes I can.  Sometimes I can be thankful for the good days, the clear-eyed days, the trip to Orange Beach that turned out great.  I’m trying, really I am, so I just want people to quit telling me to look at the good things, be thankful for the good times, look for the positive.  Don’t you think I’m trying?  Don’t you think I would if I could?  Don’t you think I would rather be jovial, happy and carefree as opposed to this great desire I have to just crawl into bed and sleep for about a week?

But I’ll keep trying.  I know I can’t stop so I have no choice but to keep trying.  And I also know that this too shall pass.

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I have never been a fan of roller coasters, yet I find myself on this crazy, never-ending ride. It takes me up, back down and  then turns me completely upside down.  At times I feel nauseous, sick to my stomach, sick at heart, but there is no way off so I just keep holding on for dear life.  And when I think I can take no more, God sends me a gift and this tumultuous ride slows – not stops, but slows.

The roller coaster had been slowly approaching its peak shortly before our trip to Orange Beach, my gift.  Mom was doing so well and I was thinking life could actually be normal again. She had been good for about two weeks so I had hopes that maybe, just maybe, things had leveled out and she would remain on an even keel.  Why oh why do I keep falling for this dementia fake out.  My other issue, of course, is Uncle C.  Four days after leaving the ER he was back in the hospital with pneumonia.  Sitting in the ER with him, waiting for a room to open up he was completely out of sorts.  Uncle C was confused and kept talking about things that made no sense to me.  The scariest was when he looked up at the ceiling and declared that, “They are congregating around.”  Who, Uncle C?  Who do you see congregating around?  Your family?  Your beloved wife?  Don’t leave now, I’m all alone with you here and not ready for you to go yet.

A couple of days later my hubby was busy running a big tournament so I had Uncle C duty alone.  We both have been visiting him at least twice a day.  I spent about an hour and half with Uncle C on Saturday and he mostly talked about dying, about getting his hands on some sleeping pills, “I think about 30 would do it.”  He repeatedly told me that he and Aunt J had made a pact that they would do it together.  He then asked about his pistol that my hubby’s brother now has.   “I think I’ll ask for it back, you know, for protection.”  Hum, I don’t think that’s what you have in mind Uncle C.  But he’s tired and ready to go home – not my home.  He’s ready to join his wife of 71 years.  What do you say to that?  How do you respond when someone you love dearly keeps telling you he’s ready.  I’m not prepared for this!

After leaving the hospital I decided to visit my parents.  As badly as I wanted to just go home for some alone time, something told me to check on mom and dad.  As I approached I saw them backing out of the driveway.  Once dad realized it was me he immediately pulled up and parked the car.  “Where are you going dad?” I asked.  “We were going to get something to eat.”  “Oh, go ahead.  I was just stopping by for a minute.”  Dad insisted that they could wait and gave me his something is wrong face.   We sat on the patio and mom looked good, still clear-eyed.  I’m wondering what’s up.  I followed dad inside and he told me that when he returned from Mass mom told him that I had been by to say that Uncle C had died and I had called for an ambulance to take him out of the hospital but we owed $13,000.00 and my husband couldn’t get away from the tournament to write the check.  Poor ole’ dead Uncle C was going to have to stay at the hospital until Sunday when the tournament was over and my husband could write the check.  (Okay, that is kind of funny in a sick sort of way.)  Of course, dad knew immediately that mom was again delusional.   That same afternoon dad offered me the use of mom’s cell phone since mine was still not working properly.  Mom dug around in her purse for the phone, pulling out a camera, “Here it is!” she exclaimed.  “Well mom, that does look like a phone, but it’s actually your camera.”  Looking confused she continued searching before proudly pulling out a silver lipstick, “Here it is!” she exclaims again.  I knew then that the roller coaster was again headed downward.

For the last several days mom will go sit in the car and refuse to get out until dad takes her to get beignets.  Mom is diabetic and her blood sugar rarely dips below 200 these days.  Try as he might dad cannot get her to watch what she eats.  Not knowing what else to do and unable to get her to exit the car, he takes her to the coffee shop for her beignets.  One day this week, sitting on the patio with the two of them dad declared that he would not take her back for beignets for the rest of the week.  Mom spent the remainder of my visit kicking dad in the shin, kind of like a two year old would do if they weren’t happy about something, only mom didn’t look angry or upset.  In fact, she had a little playful smile on her face – but she just kept kicking him, up until the time I left for home.  This morning dad again found mom sitting in the car insisting that they go for beignets.  “I came out and crazy ole’ Tauzin was sitting in the front seat and wouldn’t get out, so I sat on him!”  mom declared.  Mr. Tauzin is the neighbor with Alzheimer’s that mom dislikes and repeatedly sees.  “I guess she sat on Tauzin’s lap all the way to get beignets,” dad said with a smile.  At least he’s starting to find some humor in it all.

Uncle C has now been in the hospital for a week and still runs fever every night.  When my husband and I visited him this evening he looked awful, again running fever.  “I think this is the end,” he declared.  “I think something is terribly wrong.  Maybe cancer.”  We consoled him, told him things would be okay, that we would bring him home whenever he was ready.  There is a sadness about him, a lost will to live, a  loneliness that we can’t fill.  I feel so awful for him.  And so torn.  I’ve grown so attached to him, have so much love for him, and I’m not ready to see him go.  But then again, I feel very selfish for wanting him to stay in this world when he so wants to be with his wife in the other.

And the roller coaster comes crashing down.  Oh how I hate those damn roller coasters.

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