Just Close Your Eyes (Not a Country Song) Friday, Feb 20 2015 

No, really, I sat in the car, my Mother’s car, in the passenger seat, with my eyes closed.   My Mother is driving at my request.  I am testing her and she is actually doing okay.  Not “great” and she drives quite differently than she did previously, but I am not too worried.  But to keep from reacting when she skims too close to a car parked on the side of the road,  I just close my eyes.  I don’t inhale.  I don’t tense up or say anything.  I practice all my self restraint. When I don’t hear the mirrors crunch, I open my eyes.  It’s going to be okay.

I’ve started going to all Mom’s doctor appointments.  She’s taking what appears to be the only memory med she is going to be able to take and it is at a reduced level because she had side effects when she tried to step up to a higher/preferred dose.  They’ve already determined she cannot take Aricept.  She reacted to the higher doses of Namenda.  I am not sure if I am imaging she shows some slight improvement since she’s been on the med, but I sure want to think it.

For the last appointment, I decide that I need to see for myself how she is doing with her driving.  Dad is having more and more trouble physically, and she’s been taking on the driving.  But she did not do well on the driving memory test given by one her doctors, so I am worried.  The answer, I think, is to check it out myself.  I explain why I want her to drive, and she’s fine with it.  I expect her to be nervous, but she doesn’t appear to be.  I am ready for a slightly too slow trip.  I even allowed extra time.  Ha!  No need. That is not what happens, as she has sped up.  Acceleration is now her friend.  And as mentioned above, I closed my eyes (three times) when she fails to move away from objects too close on the side of the road.  But all in all, she did okay.  So the driving argument of ‘you can’t drive anymore’ is postponed for a while at least.  She even remembers to ask me when we get home how she did.  That’s why I think the meds might be providing a slight spark.  The Mom of a few months ago, probably would  have not thought to ask.

I am the Sandwich Friday, Oct 4 2013 

http://en.wikipedia.org/wiki/Sandwich_generation

The Sandwich generation is a generation of people who care for their aging parents while supporting their own children.

According to the Pew Research Center, just over 1 of every 8 Americans aged 40 to 60 is both raising a child and caring for a parent, in addition to between 7 to 10 million adults caring for their aging parents from a long distance. US Census Bureau statistics indicate that the number of older Americans aged 65 or older will double by the year 2030, to over 70 million.

Carol Abaya categorized the different scenarios involved in being a part of the sandwich generation.

  • Traditional: those sandwiched between aging parents who need care and/or help and their own children.
  • Club Sandwich: those in their 50s or 60s sandwiched between aging parents, adult children and grandchildren, or those in their 30s and 40s, with young children, aging parents and grandparents.
  • Open Faced: anyone else involved in elder care. [1]

Merriam-Webster officially added the term to its dictionary in July 2006.

The term “sandwich generation” was coined by Dorothy A Miller in 1981. [2]

~~~~~~~

My eldest son, mid 30’s and his son, 5, moved out of our home this last weekend.  They have been living with us for almost 2 years.  The joy of having that level of access to my grandson was tempered by being his parent much of the time, versus just being able to be his “Granny”.  My husband and I often had a differing opinions on how things involving our grown child and his child should be treated within our home, adding an additional level of stress to the situation.  But we made it though that phase of the sandwich, and looked forward to having our home and our time delegated back to ‘us’.  We joked about relearning how to have a two person conversation, how to cook a two person meal, about cooking meals we liked vs those the picky 5 yr old would eat, how we’d spent time ..just the two of us…..and so on.   It is a nice dream.  The financial side of the situation is ongoing, but that is another topic.

So, on day two of our ‘freedom’, when my parents called, upset and needing my help, I should not have been surprised.  We didn’t even get a week of ‘just us’ before other responsibilities pressed us back into service.  My parents are aging, not in the best of health, and are quick to call on me, rather than either of my brothers, when they want or need something.  There is a thin line between want and need.  I think they call me because 1) I am female and they are of that generation that believes that caregivers are female, 2) I am the oldest 3) I’ve been down this road before with  my mother in law and 4) I find a way to do what they want if I can.

My husband and I have been ‘the sandwich’ for so many years now, providing care for members of his family and mine, that I do not recall a time when we were not taking care of an aunt/parent/grandparent/sibling and a child at the same time.  It started in our 20’s and we are in our mid 50’s now.  We were the sandwich before there was a sandwich.  We’ve been able to regroup in the small gaps between, but each round it gets harder and harder to reconnect and adjust.   Since we only get one round on this planet, I’d like to assert, we’ve done our time caring for others and we need a break.  But reality is, that is not going to happen.  Buck up, Ms. Sandwich.  This one is a toasty footlong with extra cheese.

What’s the Deal with Age? Tuesday, Sep 25 2012 

I’ve spent a lot of time recently thinking about my age.  Not because I feel old or that I am worried about my age. In fact, it is quite the opposite.  I don’t feel old, and I am not worried about my age.  I have found out recently that others appear to be worried about my age.  And I find that amusing.

All those platitudes about you are only as old as you feel and act young to stay young are things old people say.  The young people still cling to the idea that youth and acting young is for the young and  many look down their noses at someone my age (I have passed the 50 mark, but have not hit the middle of that decade) enjoying the same activities I did while in my forties or thirties.  Why would I suddenly stop liking some of the same stuff, I wonder?  But it really seems to befuddle some of the ‘grown-ups’ in that age group.

I do not have the desire to do the same things I did back then as often as I did back then, but not because I cannot.  It’s actually because my life is too busy to fit it all in, not because my advanced age makes me too tired, as the ones worrying about my age seem to imply.  My job is hectic and I shoulder more responsibility than I did during my 30’s and 40’s. I am still upwardly mobile in my career.  I upgraded my living arrangements from the average city dwelling to the home of my dreams in the country and the compute takes a bit longer, which is good in some ways and bad in others.  I have a grandchild that I adore and I spend as much time with him as I can.  I’ve bought into the whole social media scene and I’m online more than I should be.   I found out I love genealogy, and have become an addict.  (Intervention might be in my future.)  I own a second home about 4 hours away for relaxation and down time.  I have aging parents that require attention.  All that takes time, so I’ve shifted, adjusted and squeezed as much as I can into the space allotted me.  So, yes, I still do many of the ‘old’ things I used to do, just not with the same frequency that I used to do them.  And some of them are much less important as my ‘age’ (I prefer ‘wisdom’) has allowed me to determine some of those just don’t rate as high on the enjoyment meter any longer.

So bottom line, worriers, don’t worry. Yes, I’m older than I used to be.  Who isn’t?  However, just because you continue to indulge in the same activities at the same pace, and I’ve slacked off those activities, doesn’t mean I’m tired, ill or out of pace with the world.  It means my life is full of other interesting things and activities I like and people I love.  It means I’m putting my experiences to good use.  It means I am vital and alive.  It means I’m not worried.

Now where are my keys?

Time in a Bottle Wednesday, Jul 11 2012 

I never thought I would live this long.  Pretty simple.  Until I turned forty, I never envisioned a life after forty.  I still find it difficult to picture a future of any kind for myself.  I worry about the future for those I care about, fret about the impact their mistakes have on their future.  But my future is rarely part of the vision.

When I was about fourteen I visited a fortune-teller at a local carnival with a group of friends.  I didn’t want to spend any money on something like that, not having expendable funds like my friends had, and only gave in after the peer pressure became more than I wanted to bear. I wanted to be liked afterall.  The rest of the group received glowing fortunes involving tall, dark, handsome men, with love and riches in their futures.  I went last, hoping that interest would be lost before my money was spent, and we could move on.  But, as luck would have it, I wasn’t going to be able to talk or wait my way out of this situation and my palm was read.  The gypsy/witch/whatever she was supposed to be passed her hand and fingertips over my palm and told me to enjoy life while I had the time, as time was short.  What?  I remember thinking. What? They all get tall, dark and handsome, and I get ‘live while you can’?  The group of friends I was with all laughed and the game was over.  I was miffed my money was gone for that but happy to be part of the experience, part of the group.  And we moved on to the next ride.  Did I believe my fortune that day, let it stink in a bit, and not see a future for myself?  No, I didn’t.  I knew it was small time carnival non sense and it had no impact at all.  No one at that age pictures themselves ‘old’.  We all know that at fourteen, twenty is old.

As the years passed and the topic of the future would ripple through conversations, I began to realize, I was never in any vision of the future.  I can easily see my husband, my children, and others, but not myself.  I became more and more interested in the past and the mark one leaves on those around them.  (This is still something that interests me.)

I sometimes wonder if I have lived my life differently than I would have if I could picture myself older, living into my very senior years.  I wonder if I would have embarked on my ‘double’ life if I thought I had a happy senior life awaiting me. Or has my inability impacted anything at all?

Chapter Thirty Two-Alzheimers Story-Last Chapter Saturday, Jul 9 2011 

But I Already Have My Lipstick On: Our story of dealing with Alzheimers

Chapter Thirty-Two

It is now the fall of 2008. The last event I’ve written about occurred 4 years ago. And it has been a long journey. We’ve been through emergency room visits and hospitalizations during which it was apparent the hospital care giver had no idea how to handle a dementia patient. (For the record, talking louder doesn’t help and the answers provided by the patient cannot be relied upon to make medical decisions.) We’ve been through various medications hoping for mental ability improvements only to again face disappointment. We’ve been through disagreements regarding maintaining all of Belle’s preventive medications for other medical issues and wondering why we should try to keep a body healthy for a mind that is no longer able to function. Although the subject had been discussion several times over the past 4 years, it wasn’t until about a year ago, after consultation with Belle’s doctor that we made the decision to stop all of her medications except her blood pressure control medication.

We’ve been through the questions and concerns of relatives that did not understand why we didn’t bring Belle to reunions or gatherings anymore. Their misunderstanding of Belle’s abilities and situation was painful to us. We would have loved for her to have been able to travel with us so she could visit with her family. It became easier for us not to attend than to explain her absence or spend the visit describing her declining situation.

We’ve been through holiday gatherings that included Belle and then suddenly, in 2007, the first Christmas that did not. In 2007, her caregivers told us it would really be too difficult on her to travel to our home for the holidays. It was a harsh reality check.

We’ve witnessed the drop off in cards and calls from friends and relatives regarding how Belle was doing, as she became more disconnected from their busy lives. Visiting Belle became difficult and as time passed, less and less people visited. Any change of any type to her routine and in some instances, a visit was a change, could be stressful for her. One of her favorite pass times, riding along with us in a car and seeing the sites became to difficult, frightening and confusing for her. However, one of her other favorite pastimes stayed with her. Scott installed a porch swing for Belle at the home, as she always loved to swing. So, on warm days, we’d sit with Belle in the back porch, and just swing. Belle always loved to swing.

Belle’s decline was inevitable and had peaks and valleys. For some time after moving to the personal care home Belle knew Scott, if not as her son, as least as someone she loved. Belle also recalled Susan for some time in this same manner. But as the end approached, Belle became a shell of her former self. Although Belle sometimes responded to her name, she no longer recalled anyone. She required assistance to eat, to walk and to do anything connected with self care or survival. Words became rare.

During the winter of 2007, just around Christmas time, we received word from Belle’s doctor that we should consider enrolling Belle in hospice care based on the decline she was displaying. She was not in immediate danger, but her decline was evident and steady. Scott spent time during the holidays speaking with each of his siblings regarding her hospice enrollment, all of which were at our house for Christmas again that year. During February 2008, Scott and I met with the hospice representative and completed her enrollment.

During the summer of 2008, Belle, who although she was still mobile, needed assistance to walk, stumbled while the caregiver was leading her through a doorway. The caregiver tried to catch her and they both went down to the tile floor. Belle’s landing was softened by landing on the caregiver, possibly saving her from broken bones or other more serious injuries. But Belle’s face hit the door jam as she fell, cutting her eyebrow, and severely bruising her check, chin and neck. Scott and Susan, in an effort to reduce the stress of the situation, took her for the injury assessment that required stitches, rather than having her transported by ambulance to the hospital. Belle’s recovery progressed from the bruising and fall remarkably well, but she continued to have TIA episodes and her abilities continued to reduce with each occurrence.

Scott continued regular visits with Belle on weekdays although we rarely visited on weekends or evenings as her decline became more evident. Evenings were difficult because she was normally asleep by the time we got off of work. Weekend visits were a catch 22 for Scott. He dreaded going but felt guilty if he didn’t go. The stress of this internal turmoil caused his gastro issues to resurface. His compromise was daytime visits. Scott stretched his lunch hour a couples of times each week and spent the time in the middle of the day feeding his mother her lunch. Then he returned to work and buried himself in a work project, no longer dwelling on his dread, guilt or grief. We kept moving ahead one day at a time.

When Belle passed away in October 2008, she was 85 years old. I thought I would feel relief at Belle’s passing, and at some level, I guess I did. I felt relief for her, that she was no longer trapped by a mind that no longer worked. I was not, however, prepared for the grief I felt. The Belle I met and known had been gone for many years, and I felt I had already grieved for her loss. But a different Belle had been a part of my life as well, and now that Belle was gone too. I was surprised to find I felt loss for both the Belles I had known. Scott felt fresh grief. He had lost his mother years before, and now that she had passed away, he felt he had lost her for a second time. He misses her in both ways.

Strangely enough, when Belle passed away, she lost the mean illness that had plagued her for so long. At her service, her illness not attend. She was at peace, with her sophisticated style in place, shining. Belle returned to being the wife, mother, sister, daughter, homemaker, activist and teacher.

Reference:

I kept a journal through some of the time frames I’ve included in our story and have included a few exerts here, mainly leading up to our decision to move Belle. The one comment that glares at me from the page could apply to any number of situations, but certainly applies to children trying to care for an Alzheimer’s patient at home. “The end of her life is destroying the middle of ours”. I do not intend to suggest that Belle could control any of the events occurred during this period of our lives, or that everyone will experience what we experienced when dealing with a parent that suffers from Alzheimer’s. But I am certain that in many cases, the emotions I’ve tried to convey while telling our story are similar for other caregivers. My intent is to support those dealing with an illness of a parent, and to let them know that those of us that have been though this completely understand.

June 2002

Things are heading down the path of every day. S seems to be able to handle issues with his mom pretty easily, and I guess I’m doing okay with her too. She manages to come up with new ways to be confused, and we mange to come up with new ways to handle it. I think mainly, we laugh. Not at her, and not when she can see us, although I’ve seen Scott laugh when he asks her about something that she did that was really off the wall, but we do laugh. I am proud of how we’ve done so far. And managed to do, the house and her without help from anyone else. Susan and her husband (don’t go there) have been a huge disappointment. S and I have talked about it and he is resigned to the fact that they are basically useless. He wishes it were different and wishes he could rely on them, but he knows it is not going to happen. Me? I am just mad at them for the immature way they do things and not caring if S crashes under the weight of it all. But, I really have to find a way to let that go.

June 2002

It is so sad to see someone deteriorate in mental capacity. And it must be hard to be that person. I’ve often wondered just how much she understands about what is happening to her. Glimpses of the person she used to be pop out from time to time, but I’d have to say that is occurring with less and less frequency than it use to. I think I have to believe she is not aware of how drastic the changes to her abilities really are. Because the idea that she knows how she is now is almost too much to get my mind around. I think about how difficult it would be if this was happening to me, and how I would feel if I knew it was. And I can say without a doubt that it is not good feeling. I think she used to know, and I know that she knows things are not like they used to be, but she is not aware (I think) of just how far they’ve gone. Sounds like I am talking in circles, but really, I am not.

July 2002

S has been over the edge with frustration and stress. Partly due to the construction, but mostly due to his mom. She often has bad days; days that she doesn’t function as well as what would be considered ‘normal’ for her. But recently a stretch of bad days has indicated to us that she is moving into a new less able stage. However, the up side of that, or however you want to look at it, is that numerous people, including her DR have commented on how much better her disposition is, that she is happier, and her confidence has improved. It appears to get better as her stay with us moves her further from the times with Susan. The down side of this new found confidence is that as her confidence grows, she tries to do things she cannot do safely anymore, which gives us more stress and worry trying to keep her from hurting herself or other things. The fact that she feels better even if she is not improving in her abilities proves that we made the right move by keeping her with us.

When this stuff with Belle was changing with Susan and her husband, they indicated they would remain involved, helping, even having her live with them part time. That has turned out not to be true. They have done nothing, and I mean not one thing with or for Belle since mid April, when they moved on. Not even a Mother’s Day card. I mean absolutely nothing. S and I were not sure whether we wanted them to be involved or not, and certainly Belle’s mind frame is better without them, so our concern was justified, but I cannot fathom not caring enough to even ask or visit, or get a damn card. Susan has always said she was selfish, and I knew she was, but this is even too much for me to believe.

September 2002

Things at home are plodding along. Belle’s abilities have definitely decreased over the last few months. And some of the things she does defy the rational mind.

September 2002

Scott places such high standards on issues regarding Belle that I/us/life tends is lost in the process. The end of her life is destroying the middle of ours. It seems important to say that she should have what she needs to be comfortable and be well taken care of. That is not the issue. The issue is, everything in our lives, and I mean everything, revolves around her and his perception of her needs. Making sure she is comfortable, happy, content, included, not rushed etc is more important than anything else even on the smallest of things. We’ve stopped doing anything as a couple. We are a threesome. Activity must be planned to fit her pace and she must be included in everything, even if she has no clue as to what the activity is. In some cases, even if she knows what the activity is and in her former self would have preferred not to be included, he insists we cannot go/do/whatever without her. Since she moved in, he has asked to have someone watch her for us twice. Once S asked Chuck and his wife to take her for a few hours so we could attend an anniversary party. The other item, S asked Susan to watch her for an evening while I was in San Diego, so he could go out with a friend. Deacon watched her one evening months ago, so S and I could go to a play. The rest is a threesome. So while I do not want to spend all my time at work, I do not want to go home either.

Had a long, long, confused conversation with Belle last week. She again stated she knows she is having ‘problems’ completing things and she just is not able to do what she used to. I asked her if she could give me an example. She said ‘chores’. She cannot seem to finish her ‘chores, you know like dusting’. Of course, I did not tell her she is having difficulty with a hell of a lot more than ‘chores’. I wish I was just worried about dusting. And, not that is needs to be said, but it is not her fault.

November 2002

Belle continues to deteriorate. Even though this is not unexpected, it is still hard to deal with. Her argumentativeness has increased, and she needs help with even the basic functions of self care. In the past, she would not listen to me but S could get her to do what was needed. Now she argues with him and flashes her eyes like a child when told to do something or be assisted with some task. Scott keeps being surprised by this activity, but for me it’s all ‘old’ hap. She’s acted like that for me for some time now. There was one instance last week where Scott started the process for her to go to church, and she was so uncooperative, he stopped, called her ride and canceled. He was so mad, I had to take over, and I basically let her go back to bed. She sleeps more now, and that too is expected from what I understand. As the brain strains to work it tires more easily, thus the extra sleeping. Although I wonder sometimes if her brain is straining to work, as she seems so completely out of it. [I feel the need to stress I know it is not her fault.]

December 2002

I had a brief talk with S about the situation with his mom and her continued decline. It is a subject we have a hard time discussing, as we tend to disagree. When she first came to live with us her abilities still allowed her to help with some things, in a controlled atmosphere. We did our best to allow her to help even if it was very slow and needed review. The situation is such now that she cannot do anything without constant supervision, being told step by step what to do, and still not being able to understand and complete the task at hand. [I am not talking about complicated things, I am talking about clearing the table, folding towels, getting dressed/undressed, taking a shower etc.] I do not want to leave her out of everything, but since she cannot complete anything, the frustration levels skyrocket. She still thinks she can do things, and seems to have no idea that her abilities do not allow her to assist any longer. And doesn’t understand what is happening around her. Minor things like standing in the middle of the kitchen while we try to get dinner on the table or the kitchen cleaned, not moving out of the way [even when asked or told], and not being able to do anything to help. She also will not do anything I ask or tell her to do, but S can say the same thing and she will. I get eyes flashes like a spoiled child.

July 9, 2003

The Home called me today, said Belle was complaining of a headache and generally mopey. Based on the level of activity they keep going, I can understand it. She gets overwhelmed sometimes and it always comes out as she has a headache. I’ll bet because she one of the higher functioning residents, they think she can keep on going and going. She and they are still adjusting and in time, they will understand her limitations. And in time her abilities will continue to decrease.

September 2004

Belle is doing as well as can be expected. We visited with her on Monday evening, taking her out for a burger. She still loves burgers. And finger food is best when eating out, as silverware is not an option in public. But, she even had problems with finger food on Monday. S handled it pretty good, but by the end of the visit, it was obvious that he was taxed. He’s been on medication for depression for a few weeks now, and it seems to be helping.

December 2004

Belle’s brother and sister in law came out for a visit during November. We kept Belle at the house overnight. She never did recall them and I think they were shocked by her appearance and lack of abilities. We’d told them about it before they saw her, but until one sees it for themselves, it is hard to take in. Even now not seeing her in awhile and then taking her somewhere brings it home all over again. It is like the mind doesn’t want to hold on to bad information. Or wants to put a positive spin on things.

February 2006

Belle is declining as is expected. S takes it very hard. She rarely knows anyone and rarely talks. It is too confusing for her to join us for family functions most of the time. The last couple times we’ve tried she’s just had a really bad day.

November 2006

Belle is in a personal care home in closer to us now, making it easier for us to visit without it being an all day event. She continues to decline. I gave up my backyard swing so we could install it at Belle’s, as she still likes to swing. We are trying to locate another swing for our yard. S still feels bad when he visits and bad when he doesn’t. It’s a no win situation.

June 2007

S still shows signs of stress regarding the topic of his mom. He has started going to visit during the week at lunch time. I think it helps because he comes back to work and has to focus on something vs. just letting his mom’s situation rattle around in his head after a weekend visit. When we visit on a weekend, he is very quiet and morose after the visit.

Note for the reader: I’ve tried throughout this story to provide an accurate account of the events as they occurred. But regardless of how the events unraveled, the main point I wanted to impress was that the persons impacted by this disease are far reaching and misunderstood. How the afflicted person declines and how it impacts the lives around them is different with each situation, but many of the feelings –good and bad — for the patient and their loved ones, are the same. A family grieves for a lost loved one that lives but is no longer the person they were.

Chapter Thirty One-Alzheimers Story Saturday, Jul 9 2011 

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Thirty-One

The atmosphere at the personal care home was more far more conducive for Belle’s needs than her previous home and we fancied we saw some improvement.  She appeared calmer and more at ease. We continued our visits and drives, with chocolate shake treats and dinners out.  If we chose to stay at the home to visit, the back porch was normally where we would visit, watching the birds and listening to the wind chimes.   Scott continued his routine of talking to all the little ladies at the home and they smiled and shined whenever he stopped by.   Our only issue with the home was its location, which was over an hour’s drive from our home.

Christmas of 2004 was our first Christmas in our new home, and Scott thought a family reunion  with his siblings would be nice for his family.  He also felt it might be the last year that Belle recalled her children.  So, we invited his siblings out for Christmas and made plans for Belle to be able to attend.  In the months that had passed since Belle’s move out of our house, Susan had gotten divorced and moved closer to our new home.  Between  our home and hers, we felt we could accommodate the whole group for a holiday visit.

We had a house full. Larry and Emma came down from Wyoming and Mike came over from east Texas.  They all stayed with us. Chuck’s family already had plans out of state, but Chuck’s work schedule was going to limit his ability to spend the holiday with them on the trip.  He decided to stay home and attend the sibling reunion.  Since he lived over an hour away, he also stayed with us during the holidays.   Susan made arrangements to keep Belle overnight at her house on Christmas Eve.  Everything was all set.

On Christmas day 2004, Scott, his siblings, his mother and our two sons spent the day eating watching football and visiting.  Pictures of that Christmas day, ten years after the last Christmas spent together fixing up Belle’s new city home, show a family once again posed in front of a fireplace, older, tired, and glad to be together.  We all thought it might be the last time for this group to enjoy their mother’s company.

Giving a Little Thursday, Dec 16 2010 

Cookies.  Sounds simple.  When the lady from the retirement home (that’s the politically correct name for it these days right?) called and asked if we’d be willing to bake cookies again for the holiday party, we said yes.  Last year, we baked cookies for the Christmas party they have each year.  This year we did Thanksgiving  and now again Christmas.  Chocolate chip and peanut butter, regular and sugarless. Non-sugar?  What’s the correct term?  Anyway, spent last night baking endless cookies, dozens and dozens and we are not done yet.  Did you know that you can buy sugar-free brown sugar?  Well you can.  It’s costly,  just as the sugar-free sugar is more costly, but we do not need to make as many sugar free (that’s the term!) cookies as regular.  We have a killer chocolate chip cookie recipe.  Hope we still feel like making some for the holidays after all this baking.  But it feels good to help someone else out.  Give back a little.

Feeling Guilty Tuesday, Dec 14 2010 

A very good friend of mine lost his father last week.  It was not unexpected, as his father had been suffering from ongoing, worsening complications of  a stroke.  His decline was at least two years in the making. But regardless, it doesn’t necessarily make his passing any easier, and certainly not when the public goodbye is a spectacle for the ‘current’ wife, that fails to recognize his father had a life before her.  Including two grown children. Such a shame. I feel for my friend and his family.

And I feel guilty, as I am struggling with my parents.  The death of my friend’s father brings home how lucky I am that both of my parents are still here. They are showing signs of failing physical and mental health, but still here.  I am happy they are still around.  I say that up front.  I am, however, struggling with their increasing needs of me and what I see coming in the future.  I’ve been down this path before.  I know the signs and I know where the path leads.  I kid myself that I am in denial, but I am.  Each time I talk with Mom, and she is confused, has forgotten something or some other issue arises, I feel sick to my stomach, and may even have a small panic attack.  Her ‘forgetfulness’ is so much like my MIL, which if you’ve read any of my postings, you know about.  And I ask myself how can I do this again?  And somewhat selfishly, why do I have to do this again?    I feel guilty for even thinking it. But I do.  Think it.

Drama, Drama, Drama Aging Parents Saturday, Apr 10 2010 

I have several excuses for why I have not written ‘blogged’ in a while.  Not that anyone cares.  I happen to be suffering from a bad case of spring pollen fever right now and don’t feel well, so my whining might show up in my blog tone.  My best excuse is a computer versus that wiped out my system, or should I say the cure caused me to have to wipe out my system, and I am slowly reinstalling things I had backed up.  Always back things up!

Next-At the beginning of February, on a Friday evening, as I was heading to dinner with friends, I received a call from my mother saying that my father was being admitted to the hospital for observation.  It wasn’t any big deal, but it would be good if I could come over and help her out.  She was vague on what ‘help’ she wanted and the overall tone along with the vagueness of her request was strange.

You might be thinking, but of course a daughter would drop what she was doing and run to the hospital when a situation like this pops up..but of course.  The background of the situation is much more complicated and suffice it to say that both of my brothers and I have parent issues that wouldn’t necessarily lead to that automatic occurence.  I think it is safe to say that overall neither of my siblings or I are ‘close’ to our parents.  But I digress.

Regardless, when Mom called and asked, I stated I’d come and I did.  I called my husband, the famous S of the Belle story included on this blog, and told him to go on to dinner without me. When I arrived at the hospital it was immediately apparent the situation was chaos.  My almost 75 year old father was in distress, vomiting, dizzy, amount other things, and my mother was not able to provide some of the simplest information the doctors needed regarding his medical history which is long and complicated and which she knows, quite well.  If there is one things my brothers and I agree on is that our mother can go on forever regarding the smallest detail of anything slightly medical, to the point that all of us stop listening the second she starts it up. However, this time, when I asked (which all by itself should have been a clue) about details regarding how this situation had come to pass, she was vague and distracted.

Over the course of the next 5 days, while my fathers condition worsened, was diagnosed, and then treated, I took control, as my Mother displayed all the signs I have feared  and have witnessed before.  Her short-term memory is failing.  I’ve guess I’ve known it, the small signs have been there all along but I guess I just didn’t want to belive it could happen. (again) But it is.

During the last several years Mom has become almost a hermit in the house.  She only leaves when she has too, and that is rare.  Doctor appointments, things like that.  Dad is the outside world, does the shopping, runs the errands.  With his new diagnosis, he cannot do that anymore.  He has seizures and is on mediation.  So now ‘their’ independence  is threatened.  And it gets better.

After all the hell we went through, Dad, with help from Mom has decided that he doesn’t need the new medication, and when going to the follow-up doctor, who had never seen him before and did not have his medical records, didn’t exactly tell him the truth about the circumstances surrounding the hospital diagnosis.  I was supposed to go to the appointment with them, but they changed it and went without me.  Then omitted the information.  The doctor wont talk to me until Dad gives permission.  Mom doesn’t recall all (or should I say any) of the details of the appointments and Dad only hears what he wants to hear.

I want to scream. I’ve discussed the situation with my brothers, via email, believe it or not.  And based on the way we are, that is probably best.

So after two months, here I am, waiting for my father to give his doctor permission for me to speak with the doctor about him.  I Have spoken with my mother about possible testing for her, pointing out some changes I’ve seen, giving examples, of why I think she should be tested for memory loss.  And here I sit wondering if my whole adult life is going to be swallowed up by caring for an elderly parent.  We took care of Belle for years and now, are we moving into a new phase with my parents?

Can I do this again? I really don’t know.

Chapter Thirty-Alzheimers Story Sunday, Jan 31 2010 

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Thirty

Scott and I started to recover.  It seemed that Scott had forgotten how to have fun, be relaxed, and be himself.  We’ve forgotten how to be a couple, have conversation one on one and have fun.  We began to try joint activities and rekindle our relationship.  Although many of our conversation still focused on Belle, we began to speak of other things as well, a habit we had struggled with while she was living with us. We focused on the details of completing our new home, still under construction, such as fixtures and colors. Even with the immediate responsibility of Belle’s physical care removed from us, and the relief we both felt, Scott continued to feel guilty at the need move her to the facility. His regular visits that demonstrated his mother’s well being seemed to help him adjust and although he still felt guilty, the overall impact of his feelings on his demeanor diminished.   The decision to move Belle into full time assistance allowed Scott to refocus on their mother and son relationship instead of the practical, daily care side of their relationship.  He had stated often during the time she lived with us that no son should ever have to dress or bathe their mother. Scott’s stress signs began to ease.  Even as crazy as some of our visits with Belle could get, he was able to laugh and take weird happenings in stride.  Scott began to have more contact with Susan and their strained relationship eased a bit.  We began to feel we had turned a corner and that the worse of it for us was over.

About a month after moving in, Belle suffered an event which left her weak and confused.  It wasn’t the same type of issue as the fainting episodes she had experienced from time to time in previous months. After testing, the doctor ruled out a heart attack, but not the beginning of congestive heart failure or others issues along those lines.  Her heart rate was slower than the previous year, with no visible signs as to why.  In general however, she was otherwise physically healthy.  Belle was still taking high blood pressure, high cholesterol, bone density, and memory medications and we discussed with the doctor if it might be appropriate to discontinue any of these preventative medications.  We opted to continue each one, but the doctor reminded us that we should consider approving a DNR, and having it on file at the facility.  We agreed that no extraordinary measures should be taken in the event of a life threatening event, but that Belle should be treated for pain if appropriate.  Scott completed the DNR and filed it with the facility and the doctor.

We visited Belle for July 4th, during a scheduled family day at the facility.  Belle did not stop the activity she was involved in with the rest of the gang to visit with us.  She waved at us from the middle of the group and it reminded me of a little kid in a school play, waving at the parents when they are suppose to be singing, dancing or whatever.  She’d smile and wave and then try to refocus on what they were doing, while we watched from the sidelines.  Some of the residents had family visit and some did not, but since most residents did not know who belonged to who, it would be a leap to stay they did not know someone did not come to visit them.  It was not uncommon for other residents to think we were there to visit them versus Belle.  Scott had two of the little ladies that followed him around whenever he was there to visit.  He would just jump right in and help them out if they seemed to need anything or require assistance.  Sometimes I think he was better with them than the paid staff, mainly because for those few moments, he was able to focus on them without being responsible for anyone else.

I, once again, worked the closest to the facility (about three blocks away), so I was the first responder in the event Belle had an episode or a complaint that needed attention.  The facility did not issue over the counter medications without permission, so if Belle complained of a headache or cough, they would call me for permission for her to consume the requested item.  If they called Scott, he would give his permission then he would call me to run over and check on her since I was so close.  So basically, I was back on emergency run duty.

The facility used any method possible to create exercise for those able. They tossed soft items between each other while seated.  They rolled a ball around in the same manner.  They often played music and encouraged dance as one of the exercise methods.  Belle, in her changed personality state, seemed to like to wiggle around and dance and often when music played she would stand up in the group and dance.  Scott and I were still often surprised with her action in this area, because despite everything, it was still so out of her previous character for her to dance. On one visit, the group was in the middle of one of these music sessions and Scott joined the circle seated around the living room floor (the dance floor) while Belle danced in the middle of the circle.  As the music continued Belle started a flirtatious dance aimed at Scott and suddenly, without any warning, lifted her lightweight sweater to flash him with her chest.  I was standing on the other side of the room and saw her flash him and saw his expression. Scott was shocked, in more ways than one, as it was certainly not her personality type to flash her chest at anyone, much less him and to top it off, she wasn’t wearing anything under the sweater.   He blurted out in a surprised, choked voice “what are you doing?” while the music continued to play and Belle continued to dance. As she danced around the area a bit more, she moved closer to Scott, smiled coyly, and said in a clear, sweet, flirtatious voice, “if you don’t know, I’m flirting with you.”  I laughed until I almost cried.  Although no harm was done, Scott’s shock and surprise stayed etched on his face for the rest of our visit, which was not very long.  We can both laugh about it now, although for some time after this event, Scott felt it was a reminder of just how strange and impacting this disease was, and how far from normal Belle had become.  He grieved for the loss of his mother.

Soon after Belle’s arrival at the facility, another lady, also new to the facility, attached herself to Belle and sometimes believed that Belle was her husband.  While Belle had for the most part been in good spirits throughout her decline and even with the onset of her angrier levels still tended to be in good sprits most of the time, Bobbie displayed her dementia symptoms differently than Belle.  Bobbie tended to cry or, as Bobbie once told us ‘vibrate’.  Her anxiousness was clearly visible while she paced and wrung her hands.  Now that she had attached herself to Belle, she was constantly at Belle’s side, touching her hair, trying to hold her hand or attempting to talk with her and for her.  Belle’s reaction to this unwanted attention varied.  Sometimes, we would see no reaction at all, while other times she would display signs of stress that would manifest them in amplifying her recent habits.  She might sit by herself, turn her collar up, complain of a headache or that her eyes were tired, a common phrase used when she could not express what she really felt.  She might also refuse to eat when her stress levels were high.  After this situation became apparent and showed no signs of abating, Scott spoke with facility management about the issue.    Bobbie had not adjusted well to her new surroundings and her family had been told they may need to hire a full time helper for Bobbie to redirect her and otherwise keep her from affecting other residents.  The staff of the facility was aware of the issue and was already working on it with Bobbie’s family.   Bobbie was reevaluated by her doctor and her medications were adjusted.  This medication adjustment obviously calmed her down and although she still thought Belle was her husband, the calmer Bobbie was easier for Belle to tolerate.  As time passed, Belle sought Bobbie out for attention and they spent much of their time together.  It was not uncommon for them to hold hands or for Bobbie to tell us that ‘he is just wonderful’ during a visit.   Staff told us it was not uncommon for patients to become attached to one another, and most of the time, no issues arose.

At Christmas time, many families gathered at the facility for a Christmas sing along by the residents.  We were surprised and amused to see Bobbie’s ‘real’ husband present. No one had to point him out to us although later on we were introduced.  His resemblance to Belle was striking, same hair (color and length), same build, and glasses.  We now fully understood how someone suffering from dementia could come to believe that Belle was her husband.

As mentioned earlier, one of our pastimes during this period was to pick Belle up and take a drive to our new home under construction.  Living as a builder’s wife for most of her married life, she was familiar with job sites, and often visits to our home would bring forth a pleasant, relevant comment or two.  Scott would carefully lead her through the work site and she would chatter about whatever came into view.  We often sat at the picnic table we installed at the site and ate a snack.  This activity allowed us to spent time with Belle without stressing her or us.  It was during one of these visits that a moment of clarity hit Belle.  She looked at Scott sincerely, and told him she was proud of him and that Jim would have been proud too.  Scott was taken aback, overwhelmed and grateful.

It was also on one of these visits that we experienced an unpleasant side of Belle’s decline. After visiting the house, Scott assisted Belle back into the car and we took a short drive through the neighborhood.  Although Belle had not indicated that anything was amiss, it was soon apparent that we had an issue. Belle had been experiencing bladder control issues for some time, but she had not had, that we were aware of, had an issue with bowel control.  In that area, she was good at telling us she needed to use the restroom. But, unfortunately, on this occasion, she had an accident.  We pulled into the neighborhood park, which included a bathroom and proceeded to correct the situation.   While cleaning Belle up, she did not seem to understand what was happening and although she kept stating ‘oh my’, I had the impression it was because the water from the tap was cold versus maintaining an understanding that she had had an accident.  This event brought home to us once again, that time did not stand still and that she was losing more and more of her abilities.

As the months passed, we began to notice some things about the facility that caused us concern.  First, with 16 dementia patients all residing together, the atmosphere inside the facility could be frenzied.  Patients can get agitated and when one resident got worked up, it could have a negative impact on other patients.   Several times, when visiting Belle, she seemed upset by the actions of others, and it seemed to cause a bad day for her. A second issue was that residents had access to each other’s rooms and Belle’s things were often relocated to other rooms. Even with her name written in her clothes or on other belongings, it was difficult to keep items from moving around, and we were frequently retrieving her items from other resident’s rooms so she could have them.  It was also not uncommon to arrive and find her wearing someone else’s shoes, or taking a nap in someone else’s room. Additionally, Belle was one of the higher functioning residents and we began to suspect that due to her abilities, she received less attention than other residents.  Some of the other residents required almost constant attention, leaving less time for the caregivers to concentrate on residents at Belle’s level.  Belle needed to be monitored and reminded to ensure she was drinking plenty of fluids and eating or she would just at the table without consuming her food.    Although we felt she was safe at the facility, and we felt in general she was receiving the care she needed, we felt like this attention to detail might be missing.

With the expense of her current home and these attention concerns fresh in our minds, we decided to resume looking for alternative living arrangements for Belle that might have a ‘smaller’ atmosphere, a facility with fewer dementia patients that required attention and a facility that, hopefully would cost less.   The nurse practitioner at Belle’s doctor’s office recommended a specific personal care home not too far from us that catered to elderly with all kinds of issues.  The maximum resident capacity was four at any one time and it was located in a regular house in a neighborhood.  Scott contacted the facility’s owners and discussed at length Belle’s situation and his desired level of care for her. Susan, Scott and I visited the house, met with the owners and as a group, discussed Belle’s situation and our concerns.  We all agreed that the smaller atmosphere would benefit Belle.  We were also pleased that the cost was substantially less than her current facility. In January 2004 we placed her name on their waiting list.

On February 13, 2004 Belle suffered a severe episode and passed out while trying to use the bathroom. EMS was called.  I received the call from the facility as well and arrived at the facility just after EMS arrived.   Belle looked awful and pale as she lay perfectly still and the gurney.  For a moment, I thought she was gone.  EMS worked on her for some time trying to get a pulse or blood pressure reading, and finally, a pulse weakly appeared.  As she began to wake up, Belle was obviously frightened and obviously did not understand what was happening around her and to her. I held her hand, telling her all would be okay, as they prepared her for the ambulance.  As she was loaded into the ambulance, I told her I would be following her and that Scott was also on his way to her.  She whispered thank you.  Mentioning Scott always helped calm her.

Scott, Susan and her husband arrived at the hospital soon after Belle and I.    Tests were conducted to determine what had occurred, as this spell was not the same as the other small TIAs she had experienced.  The diagnosis was that she was dehydrated and had a low heart rate, a similar diagnosis as her last spell when she had first moved to the facility.  The dehydration that impacted her bowels with constipation causing her to strain to vacate and the low heart rate had caused to her pass out under this strain.  The doctor recommended that she receive a pacemaker as a low heart rate could cause to her faint under stress or, in a worst case scenario, her heart could just stop.

Scott refused to approve the placement of a pacemaker. Keeping her body going strong when her mind was gone was just not reasonable.  Although Scott explained Belle’s mental dementia situation to the doctor treating her for this episode, along with our concern she would harm the device by constantly picking or scratching at it under her skin, the doctor was very surprised at Scott’s steadfast denial of permission to proceed.  It was quite obvious that he did not agree with the decision. The doctor seemed to think it was an expense issue and repeated several times that Medicare would cover the procedure.  However, Scott did not change his mind and in the doctors’ presence, Susan and I agreed with Scott’s decision.  It was obvious the doctor did not understand our position or Belle’s mental incapacity.

As we spoke with the doctor, leaving Belle for a brief time in the emergency room under the supervision of others, who had been told that Belle could not be left alone, Belle managed to remove all her tubes (IVs for hydration) and monitors (pulse, heart) by just ripping them off and out of her.   The aid said she only left Belle alone for a moment or two.  Even though this occurred after Scott had declined the pacemaker option, her actions provided ample proof to us that a pacemaker, which can be felt under the skin, would be, in her mental condition, an issue.  We felt it was likely she could scratch at it in the same manner she scratched off moles on her skin.

Later that afternoon, we took Belle back to the facility for the night and explained the situation.  We felt that part of the issue that had caused her episode, which was Belle’s severe dehydration, was directly due to her care at the facility.    They were responsible for monitoring her fluid intake to prevent just this type of situation.  They assured us they were doing all required of them, but would be more diligent with her fluid intake.

The next morning we contacted the owner of the personal care home to ascertain the status of the wait list.  A couple that had been living at the personal care home while he recuperated from surgery was planning to move back to their home at month end, earlier than expected.  So, with perfect timing in our opinion, an opening for Belle would be available at the beginning of the following month.   We made arrangements to move Belle to the personal care home as soon as possible.

Scott called his brothers.  He told them what happened with the most recent episode, what he had decided regarding the pacemaker and about moving Belle to the personal care home.  Mike, as usual, was the most supportive.  He was the least involved with his mother’s care and the most supportive throughout all the phases of Belle’s situation thus far.   Chuck was tentative about another move, but bowed to Scott’s power to decide.  Larry was the most vocal but was at least complimentary of the cost savings for the new location.

Once again timing was on our side and the couple occupying the room Belle would be assigned decided to make their move the following week.  We packed up Belle’s belongs and moved Belle to the new home as soon as the couple had finished moving out.  I re-hung all her pictures and made her new room as much like home as possible. Belle adjusted surprisingly well to the move.  She was the only dementia patient in residence and the slower pace of the home provided her with more ‘good’ days.

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