It's not deliberate

You have to understand that it's not deliberate. None of it is deliberate. Once you get that, you can survive the onslaught. And it definitely is an onslaught.

Last

This is a quickie.

One of the realizations that you have to come to with this disease, is that as it progresses, you the caregiver, have to be prepared to be in last place. It's not a pleasant realization.

When it comes to meal time, you eat last; when it comes to going out, you dress last. You are generally last. As a parent, this is normal but I'm not familiar with any of this because, I'm not a parent.

I am believing strongly that all this is preparation for something else, I just can't for the life of me think what it might be.

The reason all this comes to mind now is that I've just (at 12:30 pm) realized that there isn't enough in the fridge to feed us both at lunch time (in about 45 minutes). So I've just put some soup on. There's plenty in the fridge for Barbara so she'll be fine, but I'll be eating last. Again.

Sleeping Beauty

My mother has always been a sleeper, but this is getting crazy. It's 9:35am and she's been in bed since probably 9:00 last night.

Throughout my childhood, my mother always claimed that she couldn't rest sitting up. She had to lie down (and ultimately, sleep) to rest. As a child not much in need of rest myself, I simply accepted her explanation. Who was I to argue? As an adult though, I have often wondered whether my mother's need for 'rest' wasn't really some kind of escape from a life that hadn't turned out quite as she had hoped it would.

Fast forward a couple of decades. These days Mummy seems to be sleeping recreationally. I have to wonder how much of this is part of the disease and how much may be senior depression? Mummy is always the first to go to bed but that's not new. She has always been the first down. Nowadays though, she's not only first down, but last up. That part of the equation is definitely new as she used to be a very early riser.

I hear movement upstairs now, so she's awake. I'll give her a few minutes before I call her for breakfast. Mornings are tough.

Par for the Course

Well, I gave in. After another tussle over what not to wear, I finally pulled the dress clothes out of the wardrobe and put them in the basement. It's just too much to keep trying to 'reason' with Mummy about what clothing is appropriate for what situation. So rather than keep pulling and tugging over it, I just pulled out the clothes and moved them to the clothing rack in the basement.

This is par for the course it seems. The nature of this illness is that with every passing day, some new area of reasoning disappears and so to cope, we must find work arounds. This is my work around. It's not a good one for me, since it will mean that I must either find clothing the night before (one more thing to be added to the 'things to do' list) OR I'm going to be running up and down two flights of stairs to bring the clothing up from the basement. I shouldn't complain I suppose. A little exercise never hurt anybody.

I Told You So

One of the many dreadful things about this situation is, quite frankly, what it's taking out of me. That may sound self-centered, but the reality is that I have to take care of me if I expect to be able to give care to anyone else. As primary caregiver, I'm on call several hours of the day, the trouble is that I'm also primary finance manager for the resources needed to support this condition. Had I been listened to years ago, I would likely still be primary caregiver, but my role as finance manager would been diminished because a plan would be in effect.  There isn't much benefit to me now to saying, "I told you so" (ITYS). ITYS doesn't help me juggle the many balls I must now juggle, nor does ITYS help me manage the critical resources or ensure that they last for the duration of the illness. Most importantly, ITYS doesn't make any of this any easier. 'I told you so' doesn't even make me feel better. Why would it?


The trouble with ITYS is that it's nothing but a Pyrrhic victory. You win, but ultimately you've lost. In our case, we've lost an opportunity to be ready for the inevitable challenges of aging and illness. First of all, I lost the communication round of the game. I wasn't able to communicate the urgency of the need nor the importance of action. Second, we also lost the time advantage that we would have gained had we followed through on my recommendations six years ago. Third, and the reason that hurts most, is the realization that not only was I right, but that my begging and pleading (and cursing and fighting) was, unbeknownst to me, going to protect my own sanity.

When I was making my recommendations I couldn't know that it was my sister and I who would be next bulls eye on the illness radar, not that it really mattered. I was making recommendations because they were needed. The actions I suggested described the only sensible path that could be taken given our circumstances. At the end of the day, we did nothing so there's no family plan in place though my sister and I do have a little plan. Our plan is still in its infancy, but it's moving in the right direction and growing slowly. Herein lies the reason for my juggling present and future. We have to try to manage today and tomorrow simultaneously. It's tiring just thinking about it, not to mention doing it.

I stand by my assertion that today's care has to be paid for out of yesterday's (and preferably last year's or last decade's) savings and investments. I also stand by my assertion that a family does better if it deals with the inevitable financial challenge that long term illness presents in the cold, harsh light of day, before anyone is ill and when family members can bring an unemotional clear-headedness to the discussion. Unfortunately, as I've learned, discussions of illness and aging, with the people who are likely to become ill when they age, is dangerous work. Apparently, I'm not certified to perform such work. So I muddle through and on, working in present and future modes simultaneously. This is the life. It's going to be quite something when we come out the other end having prevailed, as I fully intend to do. We're almost there now, but I'd really prefer to be there already.

Drawers

There's a thing with Mummy and drawers.

One of the time fillers she seems to use is to move clothing around. So all my work from last week, moving winter clothes and washing winter clothes and bringing out the spring/summer wear and arranging it properly in her drawers must now be redone. Barbara has moved every single piece of folded clothing. The things in the closet have fortunately escaped her attention.

Sigh. Someone suggested to me last week that I should remove all the clothing save the pieces for the current week. I'm reluctant to do that for the simple reason that it will mean trekking down and up two flights of stairs, but it's really looking like I won't have too many choices. There is no controlling what Mummy is going to do in her down time. That being the case, I can either just leave her to it (and suffer the consequences when it's time to dress or select clothes) or I can move the clothing and add another activity to my schedule.

Thank God I'm currently between professional opportunities. But what'll happen when I get a job? Where's the energy going to come from to do all the necessaries?

Washer/Dryer/Toothbrush/Toothpaste

Several months ago, Mummy tried to do her own laundry. It didn't turn out well.

We discovered when Mummy tried to help herself with her laundry, that she no longer knew which machine did what. Where we come from, clothes are generally dried on a clothes line, out in the backyard. There are terrific breezes and plenty of hot sun and in the rainy season (about 6 months of the year) there is usually plenty of warning when the rain is coming, so you can run out and pull things down should it come to that. I say all that to say that we are therefore, very familiar with washing machines but far less so with dryers. The consequence of this is that the memory of the dryer is a recently acquired one and therefore, one of the first to be lost. As a result, Mummy looks at these two pieces of equipment sitting side by side, and to her, they are both washers.

In an effort to be helpful, Mummy tossed her clothing into the 'machine' and threw the soap in and shut the door. I can't say whether she actually turned the machine on, I doubt it, but in her mind, she had put her laundry in the machine. The trouble was of course, that she had put her dirty laundry in the dryer. With soap.

Several hours later, my sister went to use the dryer only to find clothing and a handful of soap sitting in there. Well she wasn't happy about the requisite clean up but hey, what do you do? This was fairly early on in the process so I still thought (and sometimes still do), that a conversation, an explanation would suffice. It didn't. Weeks later, the same thing occurred again. This time, instead of offering an explanation, I came to the computer and printed two signs: Washer & Dryer and affixed them to the two items in question. This seemed preferable to having to go through the cleanup a third time.

My efforts might have been useful at an early stage of the disease but not anymore. Nowadays, Mummy doesn't make any attempt to wash her clothing at all. Part of that is a consequence of the disease. Since there is no sense of time, there is no sense of having worn the same piece of clothing for days. There is no sense of needing to wash clothing at all. Beyond that, there is something else. Mummy doesn't like to be wrong. Once you've had to tell her about something and require her to adjust her behavior, she checks out. In her mind, she's been 'corrected' about the use of the washing machine, so now she doesn't use the washing machine. At all. Many months ago, she and I argued about her using my toothbrush, she recalled it as me arguing with her about using my toothpaste. So now, she doesn't use any toothpaste to brush her teeth unless advised to do so. There are other examples of this in everyday life....the dish washing for example. Because we often ask her not to wash (she doesn't see well so the dishes tend not to be perfectly clean when she's finished), she will come to the full sink and wash only the dishes she has used.

These behaviors are completely new for my mother. When we were young, she would shout and carry on if any of us went in to the kitchen and washed only the utensils we had used. And yet, here we are with her doing precisely that. She would carry on, if we talked about my this or my that in reference to items that were common property. And yet, here she is now, not using my toothpaste. When the caregivers for Alzheimer's and Dementia patients say that the personality of the patient changes, it is so very true. We're seeing it now. Fortunately for us, the changes are manageable thus far. Lord only knows what's around the next corner. I don't imagine it will be as simple as dealing with soap in the dryer or toothpaste.

Rabbit Holes

In Alice in Wonderland, Alice falls down a rabbit hole into a strange new world. Call me Alice.

I keep thinking that she's all here but really, it's I who am in the rabbit hole. This is a brave new world and I really need to come to grips with it.

What was it this morning? Nothing, and that's what's scary. This morning, Mummy woke up and instead of making her way downstairs to get her breakfast, she stayed in her room, fiddling with bits and pieces lying on her chest of drawers. The ability to determine that it's morning, my first priority should be food and water, simply no longer exists. So I had to push her out of her room to go downstairs and eat. As usual, the refrain was, "You haven't eaten in more than twelve hours. Food should be your first priority", but as in all things, there being no sense of time (and, I've discovered, no ability to translate sensations from the stomach into "I'm hungry"), that refrain is met with a blank stare.

She got downstairs and sat at her usual place in front of the prepared meal and....nothing. My sister had to instruct her to drink the water set out for her. It's clear that we're getting to the place where every meal will require direct instruction to eat. Actually, we're there already. She will frequently sit in front of a prepared meal for several minutes, neither looking at the food nor eating it. I have come to the point where I can just keep moving, but you do have to circle back to ensure that some consumption is occurring.

This is the rabbit hole. I wonder where we'll be going next?

To tell the truth.....today I lost it

This morning we were to go to the doctor. Note the use of the past tense.

First, it was the bath. She's not aware that it takes her nearly an hour to get dressed and that only if I'm running up and down the stairs, making sure that the lotion is lavishly used, and the appropriate clothes put on.

A few days ago, we had lovely 90 degree weather (we're from the tropics, so 90 degrees is lovely for us). Today however, the temperature has dropped precipitously and an adjustment to the clothing needs to be made. When you add to that the fact that I've finally started transitioning her wardrobe - switching cold weather clothes for warm - what you have is a recipe for disaster.

As always, I selected and put out the clothing for Mummy to wear. She put them on (not without some complaint, of course) and then, after calling the taxi, I check on her to find her ironing a totally inappropriate blouse because according to her, "I 'ent wearing no set of black clothes". Sigh.

Well, I lost it. I canceled the cab and the appointment. I simply didn't have the energy to have a tug-of-war with Mummy over clothes this morning and then have to be responsible for transportation, appointment, alimentation and all the necessaries associated with an outing. Not today. I've taken the day off.

If you're looking for us, we're at home. Chillin'.

Strong Medicine

Yesterday, I experienced full throttle, what Mummy's condition really looks like.

Mummy had a doctor's appointment on Thursday at which they fitted her with a device to monitor her blood pressure for twenty four hours. For a 'normal' patient, this would be no big deal. The patient would go home with the device and return the next day. My mother is no longer a 'normal' patient.

We went home with the device and at least once during the course of the evening, I was required to explain what the contraption was. She went to bed and it seems that at some point in the night, the device either came off or was removed. By the next morning, when the device had to be reattached, mother had no idea what it was nor why she was saddled with it.

What is worse, I believe the presence of the device exacerbated her condition. Obviously, I have no proof of this. My only evidence is that for the first time, I really saw what dementia looks like in my mother. No fewer than 6 or 7 times did she ask me what the thing was and where it had come from. The previous day was totally gone. Absolutely no recollection of having been to the doctor and any adjurations to the contrary, I now know that it is likely that more often than not, she has no recollection of anything further back than perhaps 5 minutes previous.

I have continued to live in a measure of denial pretending, or hoping, that Mummy is still fairly aware of her surroundings but I realize now that that is simply not the case. She is entirely dependent upon us to translate her surroundings for her; to give her hints as to where she is and when; to tell her who people are, and frankly, there may increasingly be a need for us to tell her who we are.

And so it is. This is the surreal world that is Dementia.

Two Times

Everything has to be said two times.

One of the most exhausting aspects of the early stage of this illness is the resistance. While she is yet able to be self-determining, Mummy self-determines. To that end, she resists every instruction. [And yes, they are instructions because the higher order thinking is no longer there, so offering information in the hope that she will make appropriate decisions is wasted time.] So you ask/tell her to put in her eye drops and she resists; you ask/tell her to get changed, resistance; you ask her to take her medication, you guessed it, resistance. The trouble with this, and I've said this before, is that since she forgets the instruction if it isn't carried out immediately, the onus is on one of us to repeat, return or rerun the course.

I'm not going to lie, it gets to you sometimes.