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.