The Difference a Day Makes

Things changed again on Saturday morning. Mary had a small stroke, a TIA (Transient Ischemic Attack). It was the worst one she has had thus far, involving paralysis of her right side, her arms, legs and face. She could not talk. It lasted about thirty minutes from beginning to end but she was weak and wobbly the rest of the day. She was also aphasic so she could not string words together coherently.

Having admitted her to Hospice just this week was an amazing blessing. We were able to call her nurse who came out and assessed her and took her vitals. Her BP was elevated but after calling it in to the doctor we were assured this was normal for TIA.

Yesterday she improved as the day wore on but it is obvious that she is struggling more and more with her language and cognition now. There most certainly is a difference between the loss of words and memory that AD causes and the loss of function brain damage from a TIA causes. Before the TIA she knew she was missing words which kept her frustrated. Yesterday she would say something quite normal and then suddenly say something that did not make sense, but she didn’t realize this because it made sense to her.

Saturday, I sat and quietly watched her as the nurse was examining her, talking to her, listening to her. She seemed markedly smaller somehow, much older and fragile than she was the day before. There is no easy way to say this, she is dying by inches but Saturday I think she skipped forward a few steps.

The Hospice team has been coming one at a time this week to meet and interview her. The Chaplain came yesterday. I cannot say enough good things about Hospice right now.

Time Out

I didn’t choose this respite, it sort of chose me.

Things have been needing done at our house (where we hardly ever are anymore) so we lined up service calls for today, three of them, exterminator to get the squirrels out of the attic, guys to move the dock (lake is up!), and a plumber to fix a leak. I made sure Mary was okay in her trailer at the farm and being checked on during the day. Knowing that I was going to be trapped (oh please don’t throw me in the briar patch!) at my quiet house all day, I gathered things to have with me. My laptop, (a given), the book I am trying to find time to read, Alzheimer’s From the Inside Out by Richard Taylor, a large bag of Cheetoes (which is a food group of its own I think and if not should be), coffee, water and my Bible.

I made myself comfortable in my favorite schmuchy chair, then I read, read, read, wrote, read, wrote, munched and wrote some more. Periodically I opened the door to a service person and then quickly returned like being sucked by a vacuum to my well-stocked command post.

It occurred to me how strange life is. Imagine thinking being stuck at home all day is equivalent to being on vacation.

I’ll take what I can get, when I can get it.

Word Thief

Helpless. That’s the best way to describe watching an LO (Loved One) slowly disintegrate from AD. It’s not like cancer or some other death sentence because it vacillates, at least in the early to mid stages. One minute she is rambling in incomplete sentences because the words she wants to use will not come. And then, out of the blue, she can retell an old, often repeated, story verbatim with nothing left out. It makes me think that our brains can operate like a damaged tape recorder. Her playback button still works, most of the time, but the RECORD button is broken so when the topic is something current, what comes out skips and drops leaving gaps. The listener has to figure out what is missing.

What makes AD worse than a diagnosis of cancer is that she refuses to accept that she is struggling with mental decline so there is no good way to help her make peace with what is happening to her. She has easily accepted her bladder cancer. We don’t even talk about it anymore, especially since she doesn’t have pain. But when she asks the same question over and over, or she tries to explain that she cannot get the TV remote control to work so she can watch a program scheduled for 5 p.m. when it is still only 3:30, I am left with no words to help her understand.

Apparently AD is a word thief and can steal words from the afflicted as well as the caregiver.

The Voice of Reason

Her once good rationale is all but gone now. Short term memory is one thing but reason and the ability to grasp simple concepts is apparently more important to successful day to day living than remembering how to do something. DH told her on Saturday, again, that she is never going to be able to drive her car again. They had, what he thought, was an honest, in depth discussion about the Alzheimer’s and her continuing loss of memory, something as simple as being unable to turn on her computer, which she has been doing daily for ten years. Or not being able to figure out how to turn on the TV even with simple instructions in front of her. Or adding and subtracting in her bank register. The list is growing.

But those things, while they do impact function, do not take precedence over her lack of understanding why she cannot drive and why we moved her from her house to the trailer. No matter how many times we have told her, and regardless the simple terms we use, she still does not understand that she complained daily that she was tired of living by herself. Even as we were making the plans to move her to the family property, I knew there would be something for her to complain about once it was done. She is a complainer by nature and that has nothing to do with her AD. But I did think, once she had so much more time with family and being there within steps of someone to help her if she needed it, she would settle in. But I knew, nevertheless, whether she adjusted or not, the biggest problem of her being alone in her house, several miles away, especially at night, would be resolved, or at least eased, so moving her was as much about our ability to take care of her better as it was about her dissatisfaction with her life the way it was.

In calm conversation she will agree that something is wrong with her, that she doesn’t want to be alone in her house, especially at night. But any time an opportunity arises for her to complain to someone else, she will say, “My relatives think I have Alzheimer’s but there’s nothing wrong with me.” and “I don’t know why I am in this trailer, I ought to just go home and sleep in my own house.”

I’m a problem solver. This means any time I am confronted with a problem I instantly kick into high gear, searching for solutions often to the point of obsession. I know I can’t cure her. I know it’s going to go downhill from here, maybe even to the worse case scenario of having to put her in a 24/7 care facility. But still I find much of my day devoted to seeking and thinking of innovative ways to resolve this dilemma of Mary’s decline. How to deal with it? How to deal with her daily issues? How to make her be something she can't be anymore - reasonable.

So far, I’ve got nothing.

The reason for that is the lack of reason. Even if I found the exact right words that she might understand, tomorrow she will have forgotten completely. And this is truly the diabolical, devastating, indeed evil, result of this disease.

Through a Glass Darkly

I had an experience yesterday that gave me a micro glimpse of the helplessness and frustration our LO’s must feel.

I use a popular, powerful software in my work. I’ve used this product since its earliest version launched in the late 80’s. Over time, as the world of computer programs often evolve, it has become more and more complex, bloated with unnecessary “designer’s ego” functions, and thus, to my way of thinking, less and less dependable in the process. On Monday, suddenly, for no reason that I can determine, two of the programs I use the most started crashing on the “save” command.

I spent most of yesterday seeking help for the problem, reading posts on the software company’s forums, not relating to most of the information being exchanged. Seemed like most was written in a foreign language. At one point I sat wondering how it had all gotten so far ahead of me, how could I have been so comfortable with the apparently out of date knowledge base I depend on daily when everyone and everything else had been racing out beyond my understanding? It occurred to me that I might not be able to get up to speed and figure this out and then what would I do? I grumbled to myself about the lack of support and poor quality of the product that had once been so reliable.

And then it hit me that my MIL is probably feeling exactly the same. Everyone and everything is leaving her behind, standing in the dust of what remains of her once well-ordered life, a life with boundaries that were defined by quality not just quantity.

It was a pivotal moment, I have to admit.

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known. And now abideth faith, hope, and charity, these three; but the greatest of these is charity." (I Cor. 13:12,13)

Anesthesia and AD

Learning, learning. I’m in a major learning curve. It’s a curve, I think, because while you are in the middle you can’t see what is coming around the bend. In the last few days I have read serious discussion from firsthand accounts regarding anesthesia, one in particular, Isoflurane, that appears to not only exacerbate but also launch AD. So, I’m thinking back to all the times in the past seven years, in her fight against bladder cancer, that she has been put under. I certainly can see clearly that, as she has declined over the last five years, there is a remarkable correlation between where she was before receiving anesthesia and where she was afterward. While I cannot claim the anesthesia caused her dementia, though she most definitely has had more than her fair share of anesthesia in her long medical history, I can duly note that something did indeed make it worse. If you want to be all fair and scientific one could say there are a number of possibilities, including just the stress of it all on her aging system. But that aside, it makes complete sense that a chemical that directly impacts the brain would be the first suspect for damage done, i.e., increased memory loss, agitation, and confusion. To say Isoflurane actually causes AD is a stretch only because it would be difficult to prove. AD can exist quietly in the brain and undetected for a long time, perhaps years.

I have also read reports claiming that vaccines can damage brain function and increase the likelihood of contracting AD as well. Interesting concept when you think that the increased incidence of Alzheimer’s appears to be in regions of the world that have the most advanced medical systems and abundant access to drugs.

But the cause/causes, while certainly important, are too speculative for my personal situation. I have to make decisions today about how to play the hand I’ve been dealt. For me this means not exposing her to further unnecessary discomfort or probable intensification of her mental decline, so, no more procedures that require anesthesia.

It’s a comfort to know that, as of right now, individuals can still make personal health choices. Soon, that right will be yet another yanked from us and we’ll be at the mercy of decision by a faceless bureaucratic committee.

The Guilt Lilt

I call it the “Guilt Lilt”. When she feels I have not met her expectations, she will either rant in anger, or she will revert to a lyrical sing-songy patronizing tone. I found a voice mail on my cell phone as I was leaving the house this morning.

“Hell-oh-oh. Where are you-ew? I’ve been up since si-ex way-ting. I have ca-alled your how-owse and your ce-ell. This is Ma-reee. Ca--all me ple-eese.”

Sometimes I can ignore it but, sometimes I have to give it back to her. Usually when I do that she immediately abandons the fake tone which makes it appear that she knows what she is doing. I responded that I take a shower every morning and I cannot answer the phone while I am in the shower.

“Oh,” she replied flatly. Then we finished the conversation within the new normal.

THE PLAN is now in full play with the final move to the family farm this weekend and her adjustment seems to be smoothing out after three nights sleeping in her new digs. I know there will be issues. I know she will forget many things that we will have to show her many times, but she still has just enough short term memory function that she has learned how to lock her door and then open it again, and turn the TV on and off (after several meltdowns). She can use the shower. These are good positive signs.

I think we have closed a chapter and have now begun the next, bracing ourselves for anything to happen. But at least she is close to family and safer than she was by herself in her old house.

Another day another bridge.

Will the Real Mary Please Stand Up

Alzheimer’s Disease is generally defined by progressive stages, from mild–hard to determine, to severe–complete devastation. I am beginning to understand that there are also stages that family passes through as well. Right now, we are experiencing what I consider the Did she really say/do that? stage. Every day we compare notes among ourselves based on the previous day’s interaction with her. We know the changes are coming faster now, and while we have left denial behind and are gathering strength and knowledge for what will surely come, we still keep measuring each new behavior and strange comment against who she used to be. Clearly she is not now who she was, but we haven’t yet transitioned to the That’s definitely the AD, not her stage. Some behaviors belong to the old her and we aren’t yet sure how to tag these as “just her”. It only matters because some personality traits are exacerbated by the AD and some are strictly attributable to the AD and gaging this determines how we respond to her. We have to decide who we are managing, the old her or the new damaged her. Before we can do that, we have to fully embrace that the old and the new are merging and evolving into someone else, who cannot be measured at all.

For now, in her current stage, she is still able to mask her growing decline and present different personalities, in short spurts, to different people. This is a phenomenon experienced by most every caregiver. It is not only frustrating, it also can often interfere with diagnosis in the early stages. This launches us in a heightened state of awareness, looking for definitive behavior that confirms what we know to be true. “Did she really say/do that?” we ask ourselves and each other, grasping for something absolute. We need a baseline, a firm diagnosis so we aren’t just drifting without a goal or plan of action, so we aren’t still wondering if we are just overreacting or if she truly is disintegrating before our eyes and what that really means for the near future.

How to Recognize a Blessing

Just when I had begun to think self-sacrifice was a character trait of past eras I found and joined an online forum for caregivers of loved ones with Alzheimer’s. What an amazing group of people! In a very short time I have gathered a wealth of information about AD from folks with first hand experience who are coping with this devastating disease in all its stages. And, because of this, I’ve had my faith in humankind somewhat restored.

Highlights of the many things I better understand now:

• My MIL (acronym for Mother-In-Law) has apparently been manifesting early signs of AD for a long time, perhaps even several years, that we have been summarily attributing to “old age”. But AD is not just old age dementia. It is a real disease of the brain that progresses so slowly it most usually cannot be detected in the early stages.

• The mainstream medical profession is really not up to speed with AD and an LO (Loved One) can often fool a physician as well as casual observers for quite some time, leaving the relative who will end up in the caregiver’s role in complete frustration and questioning his/her own sanity.

• AD education is sadly lagging behind other debilitating diseases and many ignorant, though well meaning, folks think you can reason with the one who is afflicted if you just show a bit more patience and try harder.

• AD impacts far more people than swine flu and is ALWAYS fatal. Where’s the media hype for AD?

Many things can exacerbate and even speed up the advancement of the progressive stages of AD, including illness, some medications, and surprisingly, anesthesia. In 20/20 hindsight, I can now think back to all the times she has had to be put under for cystoscopies in the last seven years in her battle with bladder cancer and a clear pattern of gradual disintegration directly linkable to anesthesia emerges, right up to the last cysto/biopsy this past July when we were in the hospital from 7 a.m. to 4 p.m. and her memory issues were at their very worse ever for weeks afterward. I can see a profound delineation in her mental decline from that date/event forward.

Finding the Alzheimer’s Association Online Community at http://www.alz.org was certainly a Godsend and I thank Him. Anyone who'd like to see what true heroism is should go in and read some of the posts. As we proceed with THE PLAN to move her to her new digs where she will be within steps of family and easier to monitor and care for, I know I will be able to find good advice and support from people who have been there/done that.

Blessings come in the most amazing ways.

Trust in the Lord with all thine heart and lean not on thine own understanding. Proverbs 3:5

The Mind is a Terrible Thing

Sunday was rather long. While it was a beautiful day and we made progress setting up her TV in her new trailer, and we were able to empty out and sort most of the drawers and cabinets in her kitchen, we also sat with her on the porch of the farm house for small chunks of the day, trapped in our seats by her endless repetitive jabbering. I’ve started tuning out, which is dangerous because sometimes she throws me a curve ball and asks a question. Then I have to respond with a vague shrug or ask her to repeat the question. At this stage I don’t think she notices that I’m not really listening. What I am still wrestling with is how to answer the same question asked over and over.

“Do you think I should just bring six place settings?”

“We have already put plates in your cabinet, you won’t need full place settings.”

“I guess I need to bring over my plates. How many place settings do you think I will need?

“Remember, we already put plates in your cabinet, you don’t need full place settings.”

But even the repetitions do not stress me as much as her denial, which leaves me at a complete loss about how to react. She’s been told she has AD and she certainly recognizes that something is terribly wrong with her memory, but she still acts shocked when she cannot find a word or forgets one of the grandkids’ name or can’t recall the content and conclusions of a conversation that took place only hours or even minutes before.

And then there’s the newest issue that reared its ugly head this week. She has forgotten how to add and subtract numbers in her bank register. The last thing we did last night was discover that she cannot subtract $63.12 from her bank balance. She said over and over how foolish she felt. My husband offered to take over her bill paying anytime she was ready.

“Uh, huh,” she replied, waving off what he had just said, “I just couldn’t find my calculator. I felt so foolish.”

How do you tell someone that her mind is melting?

The New Normal

Every day brings a new crisis or point of stress. Thursday we went to IHOP for breakfast, then to Sam’s to buy a mattress topper for her new bed. We sat in her trailer on the farm making lists of things she would need. She seemed excited and happy. She kept repeating how she thought she was going to love it there. I took her back home with some small boxes so she could begin packing kitchen stuff. I learned later that she discovered her electric service and phone were down. She spoke with her neighbor who assured her that it was not just her house but the whole neighborhood. When my husband stopped by after work to see why her computer wouldn’t turn on, he discovered it was unplugged, something she had done earlier but had forgotten.

Friday she called promptly at 8:00 a.m. wondering if I wanted to go to breakfast and then take the packed boxes to the trailer. I had to gently decline because I had a job to finish that I had not been able to do all week. I told her I’d pick her up later in the day and we would take her boxes then. It took all day to finish the job so we turned it into a dinner trip. When I got to her house she immediately told me about her terrible day. She had received a letter from her husband’s cardiologist announcing his new office facility. First it made her sad and then it made her mad. She called the doctor’s office to complain that they should be more sensitive and clean out their records before they send letters like that to widows. Her neighbors had called to check on her and when she started crying they immediately came over to comfort her. Thank God for good caring neighbors.

It is consistent with her nature to have been mad at the doctor for sending the letter, always assuming that things are done to her personally, and perhaps she was justified, but I think it has more to do with these profound changes in her that trigger her over reactions now. I think she is happy, relieved and excited about the move, but she is also anxious about the change coming and sad about leaving the house that she and her husband shared. She feels like she is losing control and she is fragile both mentally and emotionally. I can empathize with that.

I picked up dinner for three at Cracker Barrel and we ate in her trailer. She seemed small and wounded. The letter incident clearly had taken a large bite out of her. These kinds of things always seem to exacerbate her loss of cognition. She couldn’t grasp that it was Friday, that Monday would be a holiday. After dinner we opened the boxes to put her things away. Most of the stuff she packed will eventually have to be removed. Two potato peelers, cork screws, heavy bowls, a single shrimp fork. There is now a drawer filled with useless kitchen tools in her new trailer.

On the way home we talked about just packing things she will use. She said, “I’ll need to bring my plates.” I replied, “We already put your plates in the cabinet, don’t you remember?” She answered with that new response I am beginning to recognize. It’s an answer with a question mark. A slow, “Yes?”

Even though I absolutely know this move is the next best step, now I worry that she will struggle to adapt. I have gently warned her that there will be times when she is still alone there during the day, but based on seeing her confused eyes last night, as she tried to understand what day it was, I have a sinking feeling that this issue will be yet another ongoing daily crisis or point of stress to deal with.

So, I guess this is the new normal.

One Bridge at a Time

Every day there is a new memory related problem now. Yesterday she complained that she had tried to cook an egg and could not turn the stove top burner on. She said something must be wrong with it because it just kept clicking after the flame ignited. And while trying to pay her water bill online she noticed a text block that stated her bank balance. She was shocked and called my husband wondering why the bank would allow the water company to see what she has in the bank.

Every day it seems we reach another point of decision making. Pulling the plug on her driving was perhaps the biggest step we have had to take, moving her to the farm will be the next. Then it appears we will be doing her bill paying soon and she’ll be restricted to cooking with a microwave and toaster oven. I can’t imagine, or don’t want to, anything beyond that.

We’ll build and cross those bridges as we get to each new chasm.