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.

Dementia, It’s Here Tuesday, Dec 23 2014 

I knew this time in my life would come, but always held out hope it would not. I think I am really an optimist hiding behind the ‘glass is the wrong size’ philosophy. It is never half full or half empty, but something is sure going on with the darn glass. I am stuck between my feelings of obligation and my ‘why me’ selfishness. I want to do the right thing, but cannot decide exactly what that right thing is.

I’ve been down this path before. The ‘take care of an elderly parent’ path. If anyone ever read my earlier blog entries, I wrote about it. How my Hubs and I spent 12 years assisting my mother in law through the various stages of Alzheimer’s decline, how that impacted us, our immediate family, and how we recovered. Yes, recovered. Because we didn’t assist from a distance with our lives continuing on without interruption. Our lives were completely disrupted and we were not able to continue normal daily functions of family life as so many other did at the time. Because for them it was someone else’s problem to take on and handle. (This is the ‘don’t get me started’ part of the post.)

Which is why now that my Mother, at the age of 77, has been diagnosed with dementia, and is showing definite memory loss, I find myself once again heading down the assistance path. And feeling some conflict, obligation and selfishness.

This time is different for a few reasons. The first item is that both my parents are involved. With my mother in law, it was just her and there was no balancing act between two people to consider. As strange as that might sound to someone not dealing with this type of issue, it really makes a difference to be able to make decisions without having to consider another elderly patient. What was best for her as her dementia worsened was all there was to consider. The second item is that I carry childhood baggage into the mix. I am ‘the child’ regardless of my physical age, and some of the old hurts and feelings bubble to the surface as we start to navigate the changes mental and physical disease is placing on both of them. As an example, Mom’s new blank look (when she doesn’t understand something or is trying to process something, which now takes longer) is very, very similar to the look of disapproval she graced on me when I was a child and I have found myself feeling extremely six/eight/eleven on more than one occasion.

Another element to the situation is the new, or should I say different level of interaction with my two siblings. I do not plan on doing all that is and will be needed to be done on my own. I, as the oldest and only girl, have typically been the one is charge of parent issues in the past. And there have been some. But this is a long term, multi level problem and more than a little bit of assistance is required.

So bottom line is that Mom and Dad understand they need assistance. However, their idea of assistance and their level of cooperation versus what their offspring think is required, are not lining up. And that’s where things are right now.

We all lead busy lives, including working full time and wonder how providing the required and appropriate level of assistance is going to impact us.  As I stated earlier, I am stuck between obligated and selfish.

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.

Chapter Twenty Nine-Alzheimers Story Wednesday, Jan 20 2010 

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

Chapter Twenty Nine

The facility we selected was expensive and catered to persons with Alzheimer’s/dementia.  It was built for that purpose and was basically a house with 16 bedrooms.  It had a nice, large oak filled back yard that afforded the mobile residents outdoor time if desired. The front door of the facility was locked with a security entry system to ensure residents couldn’t leave without permission. The facility boasted a nice living space and separate dining space that allowed for group activities and family visits. Belle would have her own room and bathroom with a commode and sink.  Baths were taken in a special area with a special tub with a door so that residents did not have to step over the side of a tub into a shower.  (We had worried about this situation at home with Belle.) The facility had a hairdresser that came in once a week and used the small hair salon to keep the residents looking their best. All in all, it seemed like a perfect fit. The individuals in residence were at all different levels of assistance, from those requiring a hired helper to those like Belle, that were mobile and maintained a small level of self ability.   After the doctors and facility’s assessment of Belle were completed, all involved agreed her needs would be met. We finalized our decision with a deposit which confirmed we would be placing Belle at the facility and started the expected six month or more wait.  The day care would close down before the estimated 6 month wait was over and we worried about how we would manage Belle during the gap. We discussed the possibility of each of us taking shortened work weeks and tag team staying home.  We both had some leave time built up and if our employers would cooperate, we could care for her at home without too much of a financial impact on us. I checked on how my work laptop could connect from home, hoping I could work some from home while still caring for Belle.  However, in mid May 2003, just as we finalized the decision, the facility notified us of an opening beginning in June.  We agreed Belle would fill that open slot. We called Scott’s siblings and explained the decision. 

When the time for her move was close, I channeled my emotional energy into all the needed activities. I took two days off from work and began preparing for the move.  I made copies of favorite family pictures from her bedroom with us, framed the copies and placed name labels on the glass over the picture.  I thought the labels might help her recall her loved ones and also allow caregivers to engage in conversation with her regarding the people in the pictures.  I thought if she mentioned a family member by name, the caregiver could point out the loved one to Belle for reference. I made sure that each immediate family member was featured in a picture.  I coordinated preparation for the rest of her personal items and furniture she would be taking with her, including the memory books of family pictures we used to assist her with conversation and recall.  I marked all her clothes, sheets and other items.   I coordinated with the facility to get her room painted a light cheery pale yellow.   Scott coordinated her medication transfer, as the facility required bubble packs versus loose mediations in a bottle.

On June 12th, the day before Belle’s scheduled arrival, Scott and I delivered her belongings to her new room.   I set up her room by arranging the furniture, hanging her pictures and placing her clothes in her closet.  Our plan was to have the room ‘hers’, familiar and comfortable, before she arrived.  We wanted her to feel settled and at home to ease her transition.

On June 13th, Scott and I accompanied her to her new home and stayed with her while she inspected her new surroundings.   The attention to detail and care taken to make sure she was comfortable in her new surroundings seemed to work and as she explored her new room, she moved from picture to picture, reading the names out loud or laughing.    She immediately began interacting with other residents and after watching her for awhile, we decided it was time for us to leave.  Susan had originally planned to accompany us when we brought Belle to her new home, but Susan’s plans changed, and she promised to visit her that evening and let us know how things were progressing. So, with some reluctance, we started our goodbyes.  I watched Scott closely as I was sure he would crack under the stain and the guilt he felt that we could no longer keep her at home.  He kissed her and told her we’d be back later to visit and that Susan would be by to visit later.  He helped her settle in to a seat in the dining room to eat her first meal at her new home. As we left the facility that day, I watched as Scott cried for the first time in many years.   

We were concerned that the change in living arrangements would negatively impact Belle’s abilities.  We were concerned that she was past the ability to adjust to new surroundings. The staff at the facility told us that sometimes families wait too long to place a loved on in a facility of this nature out of guilt and by the time the person comes to live at the facility the transition is not smooth.   They are in new surroundings that are not familiar and they cannot recall why.  But Belle adapted very well to her new home.  We were thrilled she still had enough ability to adjust.  Sometimes when we came to visit, she acted as if we are interrupting her business.  We purchased wind chimes for the back yard and large flower pots with blooming flowers which Scott and Belle tended on our visits.  We ate meals with her in the dining room, watched movies with her in the living room or sat with her in the backyard swing.  Belle seemed to believe the facility was her house and would turn off the lights others turned on.  We laughed on more than one occasion when she complained to us that these other people in her house were wasting electricity or would wonder out loud who all these people at her house were. 

We began a routine of at least one weekday and one weekend visit, unless something dictated otherwise.  We frequently took Belle for drives to look at fall leaves or Christmas lights. Sometimes we drove out to her old country home or by other places from her past.  Sometimes we drove out to our new house, still under construction, and drove through what would be our new neighborhood, pointing out flowers, trees and house designs we thought she would like. Many times, if a house was pointed out, she would comment that Jim had built it, when of course he had not. She continued to like chocolate shakes, so sometimes we purchased the treat and just drove around while she drank it. Susan also began to visit regularly, taking Belle out of the facility for manicures and snacks.

Chapter Twenty Eight-Alzheimers Story Wednesday, Jan 6 2010 

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

Chapter Twenty Eight

In late 2002, Scott and I decided that the two story structure of our home was no longer conducive for Belle’s care. She was having more difficulty navigating the stairs, and the upstairs bathroom was too small to be able to assist her in the shower without being a contortionist. We needed a one story home with a larger bathroom. We discussed looking for another home in our area and decided we were tired of living in the city.  We bought a few acres about 30 miles away outside of the city, in a small town within commuting distance.  Using the information gathered during all of our years of touring model homes and homes under construction, we began designing a new home to be built with our wants and Belle’s needs in mind.  The project gave us something to focus on besides Belle.  We spent at least one weekend day, with Belle hanging out with us, clearing the heavily wooded lot, roughing it, and in general having a nice day.  We committed to the project and began to make plans accordingly.  We again had something fun to work on together. 

Belle began to have recurring episodes of what appeared to be fainting.   The first one occurred in November 2002 when Belle was visiting with Chuck and his family the day after Thanksgiving.  Belle was suddenly weak and more confused than normal.   Then she slept for an extended period of time and seemed to be her normal self the following day.  Scott spoke with her doctor, and was told that this was not uncommon and not to worry.   The doctor mentioned that we may want to consider placing a DNR in Belle’s file.  Between November and March Belle had one or two small episodes, and then would bounce back.  In early March of 2003 the worse of these spells to this point occurred while Belle taking a shower with the assistance of Scott.  She went slack and then passed out. Scott caught her before she hit anything, injuring his back catching her dead weight and yelled for my assistance. Between the both of us, we were able to remove her from the shower/tub enclosure and although the upstairs bathroom was very small, we were able to maneuver in the tight space and lay her on the floor of the bathroom.  Unlike the previous spells that involved passing out and then confusion, this time she experienced loss of bowel control.  Once we placed her safely on the floor, we were able to clean her up, dry her off, and attempt to ascertain her condition.  She regained consciousness quickly but was highly confused and sleepy. We managed to get her into bed and she slept for hours.  This spell was more severe than some of her previous spells and we once again had her checked out by her doctor.   The doctor stated her spell had appeared to be a TIA (mini stroke), which is a common symptom of Alzheimer’s due to the brittleness of the blood veins.  He also spoke to us again about placing a DNR on file.

Although she appeared to be fully recovered physically from the March episode, we noted an increase in her anger levels.  She began to lash at both of us more often, and seemed to, in general be more moody and less cooperative.  Her hostility at me was obviously increased. She became uncooperative and belligerent without any reason.  In the past, she would normally follow instruction provided by Scott, but now instances of balking at his instructions and refusing to cooperate increased.  Without her partial cooperation, my ability to assist Scott with her personal care markedly diminished causing the majority of the physical care to be provided by Scott, as even with her resistance, she still would cooperate more easily with him than me.  I assumed even more of the background support functions and Scott assumed full lead with Belle.  I began to see obvious signs of stress in Scott.  He was obviously physically, emotionally and mentally fatigued. 

After careful consideration, I suggested it might be time to start investigating other living options for Belle.     Our ability to care for her at home was becoming increasingly difficult, and at the same time, it appeared access to day care might be discontinued, which would make keeping her with us impossible. The adult day care Belle was attending each day as a paying customer was slated to lose its state funding with budget cuts the theme of the day.  When the funding for the day care facility was suggested as a place to cut back, I tried to fight the cut backs by writing letters to each legislator, explaining in detail the hardship the closure of the facility would cause for the families that used the facility.  I also explained that some of those using the facility were paying customers, even though the facility relied on state funding for its survival.  Most of my letters did not receive a response and the one that did was a form thank you letter. 

Scott struggled with the idea of Belle living elsewhere and not being under his watchful eye the majority of the time.  He seemed to think that it meant we had failed in some manner if Belle was placed in any type of facility care.  We discussed the situation repeatedly during the later part of March.  My position was that we had been frugal with her funds, investing them carefully, so that when the time came that she needed more care than we could give, we would have alternatives available to us and that she would have enough funds to be able to pay for her care as long as she needed care.  We had always known, in the recesses of our minds, that we would not always be able to provide Belle’s care ourselves at home, and I felt, it might to time to look into what alternatives were available to us.  Scott finally stated that he just couldn’t push himself to research this area, but if I thought it was best and time to complete the research, he would listen to whatever I learned.  I began performing research for what types of assistance was available and what it might cost.

Dementia suffers require a specific kind of care that is not often readily available at most facilities that offer elder care.  Many facilities cater to the loss of physical function or a combination of loss of physical and mental function but are not equipped to deal with dementia of an able bodied person.  I quickly determined though reading articles online, speaking with staff at her doctors office and speaking with several administrators from some of the local facilities, that Belle would require specialized surroundings catering to dementia patients that were still mobile and that she was past the assisted living stage of care normally offered.  Her assisted living stage had been occurring when she was living next door to us and with us.

I located several local facilities that touted providing appropriate assistance to patients with dementia issues.  We checked out references for each location and based on the information received, decided to visit three of the facilities.  Two of the facilities were general elder care, with Alzheimer’s wings, and one facility was strictly for the care of patients with Alzheimer’s.  We made appointments to visit each facility on different days, as Scott was sure three visits in one day would be overwhelming to his guilt level.   As we made these plans, we were also told that Belle’s day care program was definitely slated for budget cuts and would be closed down later that summer.   

With the closure of the day care program looming, we were in a time crunch for addressing Belle’s needs. She could not be alone during the day, and we couldn’t afford not to work and provide her with full time care ourselves.  We discussed trying full time help in our home, but that did not solve the evening issue that was impacting us.  Although Scott struggled (felt guilty) with the decision that Belle needed full time care outside our home, he agreed without the availability of day care, it was the correct choice.  We visited the three facilities I had identified as appropriate for Belle’s care and reviewed her financial position in depth.  Whichever facility was selected, the price tag would not be inexpensive.

Each visit was difficult, and although I had initially not been pleased with stretching the visits out over a longer period, it turns out to be better to do so, emotionally speaking.  Each facility offered what was needed.  And each facility was full of suffers like Belle at different levels of decline.  The time in between each visit allowed us some time to recoup, take a deep breathe, and discuss the pros and cons of the facility in a reasonable way, trying our best to not be emotional.

We decided that Belle’s needs would best be suited by the style and care given at the facility that strictly catered to Alzheimer’s suffers.  Additionally, it was practically across the street from my employer, and although quite a distance from our current home, it would be convenient to our home under construction. We contacted each of Scott’s siblings and discussed the situation in depth.  All agreed it was time for this change.  The normal waiting list was six months, and since the daycare would be closed before then, we were uncertain how we would manage until an opening became available.    We had Belle evaluated by her doctor.  The assessment staff of the facility met with Belle and performed their specialized assessment of her to determine her function level as they related to what assistance they offered.   With the decision made, some of the burden was lifted, but none of the guilt.

Chapter Twenty Seven-Alzheimers Story Wednesday, Jan 6 2010 

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

Chapter Twenty- Seven

As Belle declined, Scott and I disagreed more and more about how her lack of abilities were impacting us and in some cases what her abilities were.  I started to keep a journal of my complaints, because each time I tried to talk about my feelings with Scott, he would shut down emotionally. He was doing all he could do to keep the situation afloat, and he needed me to be self sufficient.  Reading back through some of my comments at the time, I can freshly recall the frustration and isolation I felt.

An entry from January 2003:

S and I both took time off during the holidays and managed to eek out a few hours together without his mom.  We are struggling not to kill our relationship because we are caring for her.  For some couples this would not be so difficult, as they never talk anyway, but S and I have the kind of relationship that includes a lot of talk, and we cannot do it with her around all the time.  And the added complication is when we do have time to talk, we almost always turn to talking about her and where things are.  We disagree on her abilities and how to handle things regarding her.  Last Saturday night we had a big blow up about her.  I think the main disagreement was that he insists on including her in every conversation and activity even when it is obvious that she is not able to participate in the activity or follow the conversation.  It taxes her to try when this happens, and she gets worse.  When she says something that is wrong [Jim just called and is coming to pick her up as an example] he never corrects her.  So she builds more conversation on the wrong information and we go into lala land.  My experience is that you can gently correct her, and it will refocus her to something else, that she might get right.  If you let her continue into lala land the tales get bigger and bigger until they are outright lies.  And I mean lies.  She makes up some whoppers and they go on and on.  She does not understand that we know what she is saying is not true.  And when I say lie, I do not mean things like “Jim said”, it’s more like “When I climbed Mount Everest”.  Stories S has heard all his life and that I’ve heard for 26 years are suddenly different now and she is always the shining star that saved the day.  I know it is part of the disease, but that doesn’t mean I should have to sit and listen to it forever, paying rapt attention.  We did that in the beginning, but there are just not enough hours in the day.  Once again I am not advocating cutting her off or being mean about it, but gently leading her away from a subject she cannot handle truthfully.  She can have a 20 minute conversation out loud that never says anything and we cannot figure out what the seed beneath the layers is.  In the past, when she would start talking about something, if you listened closely, you could figure out what the common thread was that connects the disjointed sentences.  Now, the thread is gone and the disjointed sentences do not seem to relate to anything and of course she cannot tell you what she means.

She is having more wetting accidents and then takes the protective underwear off and hides them.  Then proceeds to go around with nothing on to protect from another accident.  Or she rips the lining out of the underwear out and flushes it.  Or pulls them down and then wets.    At least three times a week she is wetting the bed through the underwear.  Sometimes she tries to make the bed to hide the wet linens.

She is paranoid, thinking that people she sees are threats to her, saying things like ‘that Mexican kid (meaning my 10 year old niece) is going to hit her in the head and steal her purse.’  Blocking off doors with furniture, hiding hammers under the bed.

A list of other things?  Palming car keys and other small objects and hiding them, wiping her nose on clean towels as she tries to fold them, wiping her nose on other peoples dinner napkins then folding it and putting it back next to the plate, answering the TV remote thinking it is the telephone, hiding food in her clothes, closet and dresser drawers, screw driver in the freezer, full water glasses in the cabinets or freezer, moving her food all around the plate scraping the fork on the plate like fingernails on the chalk board,  eating tarter sauce, or salad dressings by itself  or spreading it on her dinner roll, always insisting that her blouse collar be turned up like it is freezing outside when it is summer….it’s the little things that drive you nuts.  You haven’t lived until you open the freezer and a glass of cold water dumps down the front of you………

Scott and I struggled under the weight of the responsibility for Belle’s physical and financial well being.    It became more difficult to include her in activities with my family due to fear she would say something inappropriate to my sister in law and my nieces, based on their dark skin color and Belle’s paranoia.  It became difficult to leave Belle alone in a room for any length of time, for a variety of reasons.  It was difficult to find family to sit with her.  It was just us.

Chapter Twenty Six- Alzheimers Story Thursday, Dec 17 2009 

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

Chapter Twenty Six

With their sudden departure, Susan and her husband were not a part of Belle’s or our lives and the ongoing disappointment Scott felt toward his sister remained intact. We discussed this situation often, as Scott tried to adjust to the idea that his sister, whom he had always be close to, was no longer a part of his life. Along with other disappointments that year, we had to cancel our vacation plans for that summer, as we had no one that could stay with Belle. But we adjusted. Scott and I had, throughout our married life, tended to do routine things, such as grocery shopping, together. Now we altered our schedules so that one of us was available to be with Belle when she was not at day care. We included her in routine activities when it was feasible to do so, but often, we chose the route that caused one of us to run the errand while the other stayed with Belle.

After 6 months of no interaction, Susan contacted Scott and offered to keep Belle at her house overnight on a Friday. After much discussion and tension, Scott let Belle go visit. For the first time in months, Scott and I had an evening to ourselves. Deacon was in New Mexico on a road trip with friends. Cooper was in Colorado on a ‘racing’ trip he won. That night, for a little while, it was just Scott and I. Believe it or not, we acted like it was the first time we’d sent a child to summer camp. Scott worried about how Belle was doing, and I was not sure it was a good idea to remind me what I was missing by caring for Belle in our home. It was hard to appreciate the break in responsibility and not feel somewhat burdened by the whole situation. But, with this small gesture, Susan reentered our lives in a limited way.

Belle’s bladder control issues worsened and medication was prescribed, which in the beginning helped. We placed her on a schedule each evening, knowing that we needed to assist her in the restroom immediately upon arriving home and then remind her to use the restroom at regular intervals, in an attempt to prevent accidents. But accidents still occurred and we did not always know when they occurred. Her reaction to each accident was strange. Sometimes she would remove her protective underwear and not replace it with a clean pair, leaving no protection at all. The soiled item would be hidden only to be found at a later date in a undesired manner. Sometimes, when she had an accident, she would rip the ‘padding’ from inside the underwear and flush it down the toilet, put it in the tub, or stuff it in her pockets. She made up stories if asked if she was wearing her protection. Once, when I asked, Belle even went so far as to check herself (by placing her hand in her pants) and tell me she was wearing her underwear, when in fact she was not. The look on her face reminded me of when the boys were small. They knew the answer I wanted to hear and would say it, but the look on their face told me that what they said was not the truth and they knew it. On more than one occasion, we found out the hard way that she had removed her protective underwear and was not wearing another pair. So we were on constant ‘potty’ patrol, checking to make sure she was protected so as not to risk a visible accident, especially if we were in public. We packed and carried a special supply bag with us in case of emergency which included extra undergarments, wet wipes and a change of pants. Discussion with her determined that she knew when she was ‘wet’ and that she should not be, but she wasn’t able to prevent the accident or able to think through the solution which was changing into a new pair of underwear. It was hard to balance the dignity Belle deserved with her level of understanding when dealing a personal situation regarding hygiene and underwear and I am not sure that we were completely successful.

Other odd behaviors included Belle believing Scott, rather than her son, was her boyfriend or husband. It was not uncommon for her to bestow on him overly affectionate attention. She would hold his hand, pet his arm, rest her head on his shoulder, and speak in a cooing, soft tone. Although Scott normally handled the situation easily, at times this could cause him some discomfort, depending on where they were when she acted upon her belief. At times he was embarrassed; however, he was always careful not to hurt her feelings while dissuading her. I always found it amusing that while Belle believed Scott to be her husband she did not believe Scott was Jim.

Although we only had rare occasions of aggressive or belligerent behavior from Belle, which can be common with some Alzheimer’s sufferers, she began to have more bouts of anger or aggression as her confusion grew. Unfortunately, most these bouts were aimed at me whenever she thought I was coming between her and her ‘man’. We became aware that her anger or aggression was more likely to occur if she witnessed us hugging, kissing or engaging in private conversation. We began curtailing any outward sign of affection in her presence. Additionally, as time passed I could no longer help with dressing or bathing her. If I was tried to perform any type of assistance she would become uncooperative and glare angrily at me. Her glare would follow me around the room if I moved, and I found it interesting that she was able to complete this task without ‘forgetting’ she was mad at me. Anger seemed to sustain her ability to recall she was angry. During the worse of her bouts, she would kick or hit me when I tried to assist. When she indulged in this activity, she would lash out and then try to hide her action from Scott, in much the same way a child might hide their actions if they knew what they had just done was wrong. So, to limit the problem as much as possible, I began to assist with more of the background activity that supported whatever needed to be accomplished, such as getting her dressed, while Scott would complete the activity, such as actually dress her. Strangely, however, I was still able to pick her up from day care with a promise to take her to Scott and a bribe of a chocolate shake.

From time to time, her aggressive behavior or argumentativeness was aimed at Scott. Even though this was not unexpected, it is still difficult for Scott to accept. When these situations arose, she would argue with him about the need to do whatever he was trying to assist her with and flash her angry eyes like a child. One instance occurred on a Sunday morning when Scott was attempting to get her ready for Sunday school. As had been arranged years before, her friend from her class was still coming by and taking her to Sunday school each week. That morning, Belle was so argumentative and uncooperative, that Scott finally gave up attempting to get her dressed. This one of the few occasions that Scott became frustrated with her. Her angry words and actions were not new to me. I was accustomed to her lack of corporation. But this activity aimed at Scott was something new. He walked away, frustrated with her behavior and surprised that she would not cooperate with him. She allowed me to help her get back into bed, and she spent most of that day sleeping. Her trip to Sunday school that morning was cancelled.

It was around this time frame that a casual comment by Belle’s Sunday school friend caused us to inquire about her behavior outside our presence. The friend was in the process of dropping Belle off after another trip to Sunday school when she stated that Belle ‘sure liked her music’. Scott and I thought this was a strange comment and Scott asked her what she meant. The friend explained that during the music portion of the service Belle often clapped her hands and stomped her feet. I recall the look of shock on Scott’s’ face when he heard this explanation, as this church was not a stomp your feet clap you hands kind of place and Belle would never have considered such actions prior to her illness. Her carefully crafted façade would not have allowed it. Although Belle had been clapping her hands and dancing around at home when music played, but it not occurred to us she might be behaving in this manner at church during a service. The friend went on to tell us that when Belle had first starting this activity it was quiet and controlled, but the recently, she had expanded her movements. Although the friend did not say specify she was embarrassed by Belle’s actions, I felt she had brought the subject up for just that reason. Not long after this discussion, the friend had some health issues that kept her from going to church for an extended period of time. When the friend resumed attendance, we felt it was a good time for Belle to stop imposing on her friend’s good will each Sunday, and Belle stopped going to Sunday school.

Items went missing around the house, only to turn up hours, weeks or months later. We were careful not to leave anything small in view, as it may well disappear or end up in Belle’s pocket. The worst instance of disappearing items involved my keys. I had long ago learned not to leave my purse or any other personals item in view. On this occasion, I placed my purse and keys on a piece of furniture by the front door because my hands were full. Belle and I had stopped at the grocery store on the way home and I was carrying in groceries. I swear that I did not leave my purse in that location for more than a minute or two before moving my purse into my bedroom. I did not recall until later that my keys had not been in my purse, but placed next to it and when I moved my purse my keys were not lying where I had left them. Later that evening, when I attempted to locate my keys to retrieve something else from my car, I could not locate them. My keys were not in my purse or anywhere else I had been during the evening. When Scott arrived home we spent most of the evening trying to find my keys which contained car, home and security keys belonging to my employer. We had no luck. In fact my keys remained in limbo for over 6 months and where finally found in the most unlikely of locations. While picking out jewelry for Belle to wear with an outfit to Sunday school, I found my keys hanging on the carousel of necklaces in Belle’s jewelry box. I laughed until I cried. How she could have spirited them away and hid them so carefully, I will never know.

Chapter Twenty Five-Alzheimers Story Monday, Dec 7 2009 

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

Chapter Twenty Five

Susan and her husband disappeared from our resources as helpers. We were disappointed at their behavior and at the suddenness of the departure. The break was so complete that Susan failed to call Belle or give her a card on Mother’s day that year and did not have contact with her or us for almost six months.  Scott was a mixture of emotions regarding this situation.

We created routines for almost all activities involving Belle, so we could tag team our way through the mornings and evenings and ensure her needs were taken care of.  Since she tended to cooperate with Scott with more ease than she did with me, Scott continued to be point man for most issues regarding Belle.  Along with getting her ready to go in the morning, he handled the day to day delivery of her to day care and we shared the afternoon retrieval of Belle from day care.  Scott kept his routine of walking off his frustrations on the jogging paths downtown several times a week, and on those days, I picked her up.

Although Belle had been physically with us at least half of the time prior to Susan’s departure, the room she used as hers was our guest room.  With the transition to full time residence, we moved her bedroom furniture into our guest room.  Her belongings were placed in the room and I decorated her bedroom walls with her family pictures from her previous room, using the same plate rack holders, so Belle could continue her habit of moving items around.  I incorporated some of Belle’s collectible and family items, ones I thought she might recall, into our décor in the main living areas in an attempt to display to her our home was her home.

Since she was no longer able to take care of herself, we determined that her house would need to be sold and we started working on that project along with adjusting to full time care for Belle.  Scott and I shifted through furniture and belongs, determining what should be kept for use, what should be packed, and what needed to be given to others in the family or sold.  A time frame was established for sale of the house and the furniture was divided up between those family members that wanted it or that Belle had designated should receive it.   The issue in the yard that had caused the house to flood with run off water needed attention and Scott coordinated the needed correction.  Other repairs, some of which were to correct the ‘decorating’ Susan had completed on the house before moving, were scheduled and completed.

During the months that followed, we asked as needed for assistance from our available resources, some of which could help with Belle and some of which could help with the sale of the house.  We asked the real estate friend that had helped with the purchase of her city home so many years ago to help sell this house. We engaged my parents more in the process and they assisted us when we asked. Mom helped pack and Dad waited at the house for service people for needed repairs.   We asked for more assistance from Chuck and his family and they would take Belle for a day or Chuck would stop by for an evening and sit with her.  This assistance continued after the sale of the home. We asked for more assistance from Cooper and Deacon.  Cooper was more removed from the situation due to not living at home with us but he assisted with sitting with Granny on some occasions at our home.  During the transition period and during their time sharing the upstairs of our home,  Deacon was invaluable with his assistance with Granny.  They maintained a good relationship throughout and his easy going manner allowed him to work well with her without much display of frustration.

Although she had been living with us half of the time before the full time move in, the move to full time was confusing for her as she still believed she really lived next door.  After dinner in the evenings, Belle would push back from the table and announce it was time for her to go home, she had things to do.  We would gently explain she lived with us now and she would pretend to recall this, often repeating she did not want to be a burden.   And each night the scene would be repeated time and time again.  She was upset the day we arrived home from picking her up from day care and the ‘for sale’ sign had been placed in the yard.  She asked repeated why the sign was in her yard.

Belle became skilled at ‘sneaking’ away from our house and attempting to break into ‘her’ house, fully believing she had somehow managed to lock herself out.  Since normal access between the houses while Belle had lived next door was through the gate in the backyard which Scott had now removed, Belle would often make her way into the back yard and then be confused as to why she couldn’t get to her house.  After she managed to leave our house though the front door without being noticed a time or two, we placed bells on all our doors so we hear the door open if she tried to leave the house when we were not in the room to see her leave.    While her house was still on the market, if she insisted she lived next door, we would unlock the house for her and show her it was empty, once again explaining she lived with us and why.  After it sold and the new owners moved in, we spoke with them regarding Belle’s behavior, on the off chance she would try to break into the house or be found in their backyard.  We reminded her she lived with us each time she tried to return to the house next door or commented on going home. Eventually, she stopped trying to sneak away and go home, although we left the bells on the doors in place so she couldn’t open a door without us knowing about it.

Despite everything and her reduces abilities, Belle still had the ability to surprise me.  May of that year was nice and warm and Belle and I spent some of the early evenings sitting on the front porch swing, watching the neighborhood until Scott would arrive home from his evening exercise.   Sometimes we talked and sometimes we didn’t.  One conversation during this time frame still sticks with me.  As we sat on the swing, Belle once again, said ‘I think I’ll head on home’ and once again I reminded her she lived with us now.  She gave it some thought, frowning slightly and I explained (again) that the house had been sold, that she lived with us, and that she needed some assistance with daily activity like her medications.  I also explained to her that I understood she had problems understanding time and specifically how much time has passed regarding the events leading up to that day.  I stated that I thought losing time in this manner must be difficult.  Belle looked me in the eye, held my gaze for a few seconds and said it was more than difficult, is was frightening.

Her statement was emphatic. This moment was one her of rare moments when she was present.  It stressed for me that there were times when she understood the extent of the decline of her abilities.    Those times did not happen very often and were very fleeting.  After her statement, we sat in silence for a brief moment.  Then Belle turned to me, smiled and inquired “how about we head over to my house?”  And I again explained she lived with us.

A day or two later, after arriving home and heading into the house, Belle grabbed my hand and insisted I accompany her back outside.  She kept tugging on my hand and began leading me toward the front door.  When I followed without resistance, she led me into the front yard, pointed to the survey stakes in her front yard and demanded to know why those stakes were in her yard.  She understood what the survey stakes were and understood that their presence meant the house had been sold.  And she demanded to know why her house was surveyed.  So I told her again.

It was often difficult to know what she would be able to understand and what she could not understand.  It was almost impossible to assume she would not understand something and we found ourselves explaining thing to her in detail hoping this would be the time she understood.  During this period in her decline, she had days when repeated explanation or instructions were required to accomplish the simplest tasks.   Alternatively, she had days when she existed without questioning the activity around her.  She did not question why she needed help getting dressed or undressed, did not question why she needed help taking a shower, did not question wearing protective undergarments, and did not question going to day care.  On these days, she did what she was told to do to the best of her ability obviously not understanding very much of it.   As the first months stretched on, we perfected the routines that centered on her care and time tables.  I continued to use my tricks and methods to gain her corporation in Scott’s absence and will admit to, on more than one occasion, resorting to threatening to tattle to Scott on her to gain her full attention or corporation.  If she recalled anything at all, it was that she did not want to disappoint Scott.

After the bulk of the larger items had been distributed to family members, one of my remaining jobs was sort through the paper of her life and determine if it needed to be kept, and if it needed to be kept, by whom.  Maybe ‘needs’ is a strong word, as some of the items were sentimental, but did not ‘need’ to be kept.  The items I determined would be of interest to others would be given to them. They made the final decision if it is important enough for them to keep.

As with many members of their generation, Belle and Jim kept everything they ever received, I swear.  Cards, letters, notes, clippings, locks of hair, scrapbooks, you name it, and they had it.  I read through quite a few of the various items while sorting them and contact with this level of personal belongings provided me with insight into Belle, her decline, her relationship with Jim and the family dynamic as a whole.  Most of what I read made me feel distressed for Belle.

Throughout their marriage, in almost every instance of Belle writing to Jim, whether in card or letter form, she seemed to be begging for Jim’s attention, gushy with love and innuendo that did not fit the sophisticated facade she had crafted for herself.  This tone became worse during time frames that featured infidelity.   Jim, of course, was not interested in voiced emotion and was very sparing with nice or reassuring things to say. I felt saddened to know this intimate side of their lives, but felt it gave me a better understanding of her.

As I sorted through her things, I also began to see signs of her decline to come in her cards and letters of the past. Based on the extra ‘notes’ she has written in and on some of items, it was also evident she spent much of her time when home by herself, sorting through this memorabilia and trying to remember.  She made notes in shaky handwriting that was obviously added later and, most of the time, getting whatever was written on the item wrong.  Since time is one of the things she could no longer grasp (it was one of the first things to go) notes about when something happened, written over the note made at the time, could not be replied upon.  In the process of trying to remember and reviewing the papers and mementos Belle had actually ruined some lovely sentimental items by writing all over them with wrong information.   Reviewing her notes to herself and her notes on personal items, leads me to believe she was at home by herself longer than she should have been.  She was experiencing more difficulties than we had believed at the time, a problem I feel is common when family members are trying to assess the abilities of a mentally disabled parent.

Belle had pictures of her parents, siblings, children, spouse and grandchildren that were not organized in a way we could use to sit with her and “recall”.   As I sorted through many of these items, I decided it might be nice to create a memory book for Belle that included the pictures of her family.  I started gathering pictures and came up with a plan for creating two memory or picture books for her.  The first book focused on her grandparents, parents, and siblings and the second book focused on her children, grandchildren and great grandchildren.   I made sure as I pieced the books together that I labeled each picture with all the information I had available to me.  As an example, if a picture of a grandchild was displayed, I listed their full name, nickname, age in the picture, birth date and parents.  If I included an old picture that Belle had written info on the back, I placed that information on the page with the picture.  When the books were completed, Belle enjoyed  flipping through them.  At times it seemed that the books seemed to help her recall specific items briefly.  Often if Belle had a family visitor, the books would be used to spur conversation with Belle, allowing the family member to visit with her, even if that visit was in the past.  Since her ability to have meaningful conversation no longer existed, the books were often the catalyst to a pleasant visit or evening.  We spent any an afternoon or evening slowly turning pages, looking at pictures with Belle reminiscing to the best of her ability.

Not long after coming to live with us, Belle developed a habit of telling Scott she was going to ‘whoop’ him, with the accompanying hand motion for spank, if he didn’t behave.  Her statement could pop out at any time, but normally accompanied him directing or assisting her in some manner.  She went so far as to swat him on his behind a time or two in conjunction with her statement.   The first few times Scott thought this situation was funny, but when she repeated this action several times a day for days in a row, he found it difficult to accept.  Scott was no longer a little boy and Belle was no longer functioning as his mother.   Scott and I began to have more conversations regarding his grief at the loss of his mother.  Belle may be present with us, but the mother he grew up with no longer existed.

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